Learning to Live With CFS

The Boring Sameness of Crash Days

2012-01-25T19:25:00.000-05:00

My teen son, Jamie, and I have both been crashed this week. Turns out we both had a mild fever yesterday, so I guess we were exposed to some sort of virus. What luck, huh? Jamie only made it to school one day last week and figures he picked up a virus then. It's been a very difficult winter for him so far.

I was actually excited yesterday to discover we had fevers. I took him into the local clinic to get his weekly saline IV, in the hopes that it would perk him up a bit, and the doctor found the fever when he was taking Jamie's vitals. It was only 99.5, but his normal temperature is only about 97.5, so that counts! At least now we know why we both feel bad this week. Exposure to a virus can cause a nasty crash, but now we know Jamie's is probably not due to some very mild exertion this weekend, and mine is probably not due to my Lyme disease coming back (I have been paranoid about that possibility!)

I am getting sick and tired of lying in the family room in sweats, unshowered, unable to get much done, and listening to the TV all day long, as I'm sure he is, too. It's that dull, boring sameness that gets to me after a while, and the cold, gray weather outside only adds to the dull, dreary mood inside. We have pretty much watched every TV show available on demand that we have any interest in, plus quite a few on DVD as well. I have been trying to get a little done on my laptop while lying down because I really hate to feel unproductive, but it is frustrating not to have my usual motivation and drive.

I shouldn't be complaining because crashes lasting more than a day are rare for me now, and I'm not severely crashed this week...just feeling crummy enough that I know I can't manage getting groceries or much cooking or most of the items on my to-do list. So, I am trying to stay in good spirits and make the best of this time with Jamie, though I know he is itching to get up and moving, too. I managed to scrape together one more meal from the freezer tonight, and Jamie actually got up off the family room couch a few minutes ago to go down to the basement (and lie on the couch down there) and play a video game with his brother - that's a really big deal!! I can hear them laughing down there - there is no sweeter sound. And while he's down there, I get my beloved couch back temporarily!

So, we are trying to make the best of yet another week spent horizontally. Hopefully, we will both recover soon and get back to real life.

How do you make the best of crash days? How do you keep your spirits up when the dull sameness sets in?

New ME/CFS Study Looking for Participants

2012-01-24T10:36:00.000-05:00

This weekend, Dr. Levine told me about a new ME/CFS study looking for participants (Dr. Klimas is also involved). Unfortunately, I don't qualify for this one, but I offered to post the requirements here to try to help find more participants.

This new study will be looking into infectious agents related to ME/CFS, a very worthy purpose! The study is in need of both ME/CFS patients as well as age-matched controls. Here are the requirements for ME/CFS participants:

Age between 18-65
Must live within 100 miles of NYC
Must be off all antibiotics and antivirals for at least 3 months (possibly 6 months for antivirals) - the study will be recruiting patients all year, so there is time to go off these meds, if you want to, though, obviously, the doctors don't want you to go off meds just for the study if it will affect you adversely.
The study is particularly interested in recent onset, within 3 years, though I believe those who've been sick longer can also be included.
Abrupt onset or gradual onset is fine.
Study is especially interested in patients who are at least 50% disabled, i.e. able to function at only 50% (or less) of how you functioned before getting sick.
If you can also supply your own age-matched control, even better!

All that is required is a brief questionnaire (either online or over the phone) plus one visit to Dr. Levine's office in NYC for blood and tear samples. ME/CFS patients get $100 for participating; controls get $50.

Even if you don't qualify as a patient, if you have a family member or friend interested in helping ME/CFS research as a control (within 100 miles of NYC), that would be helpful as well.

E-mail Dr. Susan Levine if you and/or a healthy control are interested in participating.

Movie Monday 1/23

2012-01-23T18:21:00.000-05:00

I'm actually glad it's Monday today, despite the dark, wet, gloomy weather. We spent most of the weekend working hard (and making no progress!) on financial aid forms, scholarship applications, and tax preparation. Ugh. The bright spot in our weekend was a gathering Saturday evening with our local group of teens who have CFS and their families. Even though I was tired and feeling a bit down, it was a nice respite to just hang out with our friends. As Ken said, we just feel so comfortable with that group - there is no explaining to do! And it was great to see all the teens laughing, teasing, joking...basically being regular teens.

Our only other bright spot in the week was movies!

Jamie had more sick days last week, so one day, I cheered him up by borrowing Knight and Day from the library. It's an action movie with plenty of laughs and even a bit of romance. Tom Cruise stars as a federal agent on the run, and Cameron Diaz is his unwilling partner/sort of hostage. It keeps you guessing as to whether Cruise is a good guy who's been framed or the bad guy that the rest of the Feds say he is. Jamie and I both enjoyed it.
Friday night, Craig slept over at a friend's house, so Ken, Jamie, and I watched Unstoppable. I'd gotten it from the library weeks ago, but the boys kept saying it looked boring...just the opposite! It's based on a true story about a runaway train in Pennsylvania. Denzel Washington is great as an engineer with decades of experience who's being forced into retirement, and Chris Pine (who played the young Captain Kirk in Star Trek) co-stars as a rookie conductor having a really bad first day on the job. The movie was great but high tension from beginning to end! If you have trouble handling adrenaline rushes, it's best to pass on this one - I definitely should have taken an extra beta blocker before I watched it!
Last night, Craig went to a comedy show with a friend (can you see who has the busy social life in our house?), so Ken, Jamie, and I watched Moneyball, starring Brad Pitt. This was also an excellent movie, about how the General Manager of the Oakland A's pretty much transformed professional baseball by analyzing statistics, with the help of a super-smart Yale graduate, instead of managing by gut feel. This is also based on a true story. None of us are baseball fans, but we all enjoyed this movie very much.
Jamie watched a lot of The Office, Num8ers, and The Simpsons during his sick days last week, and Ken and I have begun watching episodes from season 1 of In Plain Sight, a TV show about the witness protection program. I think we have found another winner - it's great so far!

Have you seen any good movies lately?

(P.S. If you are also interested in what we are reading this week, check out the Monday post on my book blog.)

Treating ME/CFS With Immunovir

2012-01-18T17:13:00.001-05:00

In my post last week on immune system abnormalities in ME/CFS, I promised to follow-up with information on Immunovir, a prescription medication that has helped me improve over the past year.

Remember I explained that ME/CFS is neither an immune deficiency nor an auto-immune disease? Parts of our immune systems are over-active and other parts are under-active. This means that suppressing the immune system with steroids (as is often done with auto-immune diseases) won't work for us, and stimulating the entire immune system is likely to make us feel even worse. What we need is an immune system modulator, something that will help re-balance our immune systems, restoring the normal Th1-Th2 balance that we are missing.

I learned this fairly early in my illness, but there didn't seem to be many options available for treatment. I tried many herbal supplements over the years that were supposed to be immune system modulators (various types of mushroom blends, for instance), but I never noticed any improvement. I learned about Immunovir years ago, but since it is not sold in the US, I thought it was unavailable to me (my primary care physician didn't feel comfortable prescribing something not available in the US). Then, last year, my Infectious Disease/CFS doctor suggested trying Immunovir - I was thrilled to have a chance to try it after all these years!

It turns out it is fairly easy to get, if you know how. Immunovir has been used safely in Europe and Canada for decades (it has not been approved in the US for political reasons, not safety reasons). My doctor gave me a prescription that I faxed to a pharmaceutical distributor in Canada. Immunovir costs $100 for about a month's supply (dosing varies), and there is a $30 shipping fee, but my insurance covers Immunovir at 70% (I have to submit the receipts after I get it), and I can reduce the shipping fee by ordering several months' worth at a time. A friend has told me there is a cheaper generic version, but I don't have any details on that.

Dosing of Immunovir is fairly complicated. Apparently, immune system modulators work best by pulsing the dose; a steady dose stops working after a while. I have read all sorts of complicated dosing schedules online, but my doctor suggested a schedule used by Dr. Nancy Klimas, a renowned CFS specialist and researcher: Start with 1 tablet (500 mg) twice a day for the first week, then go up to 2 tablets twice a day for 3 weeks, then increase to 3 tablets twice a day (6 total). In all cases, take Immunovir Monday through Friday and take none at all on Saturday and Sunday. I have read that Dr. Cheney (another renowned CFS doctor) also suggests changing the dose each week and taking it for 2 months, then taking an entire month off.

When I tried to go up to the maximum dose of 6 tablets a day, I had some side effects. I found that taking 2-3 tablets late in the day left me overstimulated and unable to get to sleep. I backed off to 4 per day, taking 2 in the morning and 2 in the afternoon, but then I had some mild immune symptoms (sore throat and aches) after going so long without any overnight and then taking 2 in the morning. So, I have finally settled on my own dosing schedule: 1 with breakfast, 2 with lunch, 1 with dinner (weekends off), and it seems to be working well for me.

As I explained in my earlier post on my improvement last year, I felt better overall last year, with improvements in energy, more good days, and fewer crash days. Some of that improvement was due to beta blockers and some was due to Immunovir, and it's hard to completely separate the effects of the two for me. Some signs that my immune system is functioning more normally include: fewer crashes, crashing less frequently when one of my kids is exposed to a virus, and a significant reduction in allergy symptoms. I need to go back and quantify the allergy improvement, but it just occurred to me recently that a year ago, my allergies had ramped up significantly and now they are back to being mild. Also, I typically feel the worst in the winter, when there are lots of viruses floating around causing me to crash, but I haven't seen that worsening this year. I also believe the Immunovir has helped me to feel more energetic. I feel more physically and mentally alert now and only have that no-energy, no-motivation, can't-think-clearly feeling on rare bad crash days.

I also believe that Immunovir may have helped me to finally get rid of the Lyme disease I've been fighting for the past three years. With our reduced response to infections, people with CFS tend to have a very difficult time getting rid of Lyme disease and its co-infections completely. I don't know for sure yet whether I am truly rid of Lyme (see my earlier post), but I am off my Lyme meds for the first time in years and so far, so good.

So, I plan to continue to take Immunovir and also want to try it for my son, Jamie, who - as most of you know - has been struggling horribly with his Lyme treatment this past year.

One way to quantitatively measure the health of our immune systems is by measuring Natural Killer Cell function, which is typically low in people with CFS, due to that Th1-Th2 imbalance. I just realized I haven't had mine tested recently, so I will ask my doctor to check mine (which has been historically low) the next time I see her.

Once again, please remember that I am not a medical professional, and the information presented here is just a summary of my own experience and the understanding I have gained from reading research. If I have made any technical mistakes here, please let me know, and, as always, talk to your own doctor about your own unique circumstances.

Movie Monday 1/16

2012-01-16T19:46:00.003-05:00

Whew...lots of ups and downs last week and this weekend. Jamie finally made it to school for a few classes at a time last week and managed a full day on Friday, though his energy was still very low.

Craig turned 14 on Friday! We celebrated by taking two of his friends along to the Poconos for the weekend. We stayed in my mom and her husband's condo which is literally steps away from the ski lift. The three younger boys spent all day Saturday snowboarding and skiing and had a blast!

Jamie wasn't feeling well enough to join in the outdoor fun, and on Sunday, he got a stomach virus - guess he picked it up during his brief time at school last week. Poor kid was shaking with fever and chills just when it was time for our 3-hour drive home. He's doing a tiny bit better today and hopefully will recover more fully by tomorrow.

So, it was a busy week without much time for movies, but here's what we fit in:

Last night and tonight, with Craig exhausted from snowboarding and Jamie sick, we hunkered down in the family room and watched Pirates of the Caribbean: At World's End (it was almost 3 hours long, so took us 2 nights to finish!). It was good, like the others in the series, with lots of action, big pirate battle scenes, and a good sense of humor. This one had a very complicated plot. The kids loved it.
I forgot to mention last week that Ken and I watched Larry Crowne after the kids went to bed. I was thrilled to watch something other than an action flick for the first time in months! It's tough being outnumbered 3 to 1 as the only female in the house. Ken and I both enjoyed it very much - a sweet, funny story about a middle-aged good guy (played by the ultimate good guy, Tom Hanks) putting his life back together and falling for his pretty but messed-up teacher, played by Julia Roberts.
On Saturday, I kept Jamie company in the condo watching lots of episodes of Modern Family (we gave the kids the Season 1 DVDs for Christmas) which had us laughing like crazy and kept our spirits up.
Today, Jamie kept himself laughing with episode after episode of The Simpsons (Season 6).

Have you seen any good movies lately?

Immune System Abnormalities in ME/CFS

2012-01-11T16:48:00.000-05:00

(NOTE: Many of you expressed interest in hearing more about how Immunovir has helped me this past year, so I started to write a blog post about that, but I quickly discovered that I needed to explain how ME/CFS affects the immune system before I could explain how Immunovir treats it. It's just too much for a single post. So, consider this Part 1, and I will write the second part later this week.)

Within the first year of getting sick, before I even had a diagnosis, I knew that some sort of immune system problem was at the heart of whatever this mystery illness was. I saw the same pattern, over and over again, with recurring symptoms like sore throat, flu-like aches, and congestion, but it was obvious these weren't colds - the symptom pattern was exactly the same every time, signaling the start of another relapse (you learn to instinctively call them crashes pretty early - it's the perfect description). One Infectious Disease doctor told me I was just catching a lot of viruses, but I had never in my life had two viruses that were exactly the same, and now I'd had a half dozen in a year. The only thing that made sense was that my immune system wasn't working correctly.

When I finally got my diagnosis of ME/CFS, a full year after getting sick, I was hungry for information and devoured everything I could find about CFS - in books, on websites, and through the other people I was gradually finding online. I discovered that my instincts had been correct and that a dysfunctional immune system is at the root of CFS. Although the exact cause of ME/CFS is still not known, its immune system abnormalities have been documented in dozens of research studies. Most experts agree that there is some sort of infectious agent that triggers immune system dysfunction and that the dysfunctional immune system is the engine that sustains the illness and causes a cascade of domino effects in the endocrine and nervous systems that lead to our substantial and disabling symptoms.

Most illnesses of the immune system fall into one of two categories. There are immune system deficiencies, like AIDS, where the immune system is suppressed and doesn't respond properly to infectious agents. On the other side, there are auto-immune diseases, like MS, lupus, rheumatoid arthritis, and others, where the immune system is over-active and not only over-reacts to infections but also attacks the body itself. Unfortunately, ME/CFS does not fit neatly into either of these categories. This means that established treatments for the two types of problems, such as treating auto-immune disease with steroids, don't usually work for people with ME/CFS).

One of the most fascinating things that I learned in that second year of illness was that ME/CFS has characteristics of both types of immune system disorder: parts of our immune system are over-active and parts of it are under-active. This is sometimes referred to as a Th1-Th2 imbalance or a Th2 dominance. Now, AP Biology was many years ago for me, so I'm no expert, but here is my understanding. The Th1 and Th2 referenced above refer to two different types of T-helper cells, part of the immune system. Th2 cells generally respond to viruses and allergens, among other things, while Th1 cells respond to bacterial infections (among other things).

ME/CFS is characterized by an imbalance, where our Th2 cells dominate. This means, in simple terms, that when someone with ME/CFS is exposed to viruses or allergens, our immune systems over-react, creating the kind of cold or flu-like immune response I described above, all signs that the immune system is responding (even in a healthy person, most viral symptoms are caused by the immune system response, not by the virus itself). This is why just being exposed to someone else's cold can cause a severe crash, even though we don't actually "catch" the cold and why many of us have problems with allergies and food intolerances.

On the other hand, with fewer Th1 cells around, our immune systems under-react when exposed to bacterial infections. This is why people with ME/CFS are extra-susceptible to sinus infections and bronchitis. For instance, Jamie and I rarely catch colds, but if one of us gets even a bit congested, it almost always leads to bronchitis, requiring treatment with antibiotics. In fact, I had to go to the doctor's office yesterday to get treated for a bladder infection!

This also explains why those of us with ME/CFS often have bad reactions to vaccines, causing lengthy relapses or even acting as the trigger that starts ME/CFS. It's not the fault of the vaccine: it did what it is designed to do and stimulated the immune system to create antibodies. But, with our overactive Th2 cells, we respond with a prolonged immune response (i.e. crash) that would not happen in a healthy person. I have long believed that allergy shots were the trigger for my own ME/CFS for this reason. I have also observed over the years, for both of my sons and me, that our worst, longest-lasting crashes are usually those triggered by exposure to a virus.

This is a VERY simplified explanation of what is happening in our immune systems. There have been lots and lots of research studies detailing dozens of different types of dysfunction in the immune systems of those with ME/CFS, and each of these problems causes other problems, in a cascade of cause-and-effect. People with ME/CFS generally have low Natural Killer Cell function and all sorts of problems with our cytokines (where levels of certain cytokines are high and others low). Much of this is beyond my understanding.

The best resource I have seen in all these years is an excellent article written by Dr. Nancy Klimas, published in 2007 in Current Rheumatology Reports, that details all of the known abnormalities in ME/CFS patients' immune systems and how these lead to dysfunction in the endocrine and nervous systems. The paper contains dozens and dozens of references to scientific research studies that document these abnormalities. Although much of the article is beyond my understanding, it is an excellent paper to print and hand out to doctors. I especially like to give this article to doctors who don't understand ME/CFS or don't believe it is real because it provides lots and lots of hard scientific facts on the physiological basis of ME/CFS. I think this one article alone can change the minds of skeptical medical professionals! You can look at an abstract of the article online or download a pdf file of the entire article (it's 6 pages long).

OK, so that is a very general overview of immune system abnormalities in ME/CFS (please remember that I am not an expert in this field - if you see I have made a mistake in this post or know of other information that might be helpful to others, please share it in the Comments section or send me an e-mail). I will try to explain how Immunovir has helped me in the next post. Now, time to make dinner...

(P.S. 1/18/12 Addendum: Since I wrote this post last week, I have done more reading on this subject and have found that some research papers explain the Th1-Th2 functions differently, stating that response to viruses is a Th1 function (for which we are underactive), not Th2. I don't know which explanation is correct, but the bottom line is still the same: people with ME/CFS have a Th1-Th2 imbalance which means that parts of our immune system over-respond and parts of our immune system under-react.)

See my new post on Treating ME/CFS with Immunovir for information on how I am treating the Th1-Th2 imbalance.

Movie Monday 1/9

2012-01-09T19:12:00.000-05:00

I'm overdue for a Movie Monday! We actually ended up watching quite a few movies last week. Jamie is STILL badly crashed and has been couch-bound since Christmas. To cheer him up, we watched lots of movies last week (and one the previous week):

While visiting my father-in-law in Oklahoma after Christmas, we watched Captain America. I've kind of overdosed on all these superhero movies lately, but the boys love them. And this one surprised me - I had no idea that Captain America had anything to do with World War II. Apparently, his character was created to encourage Americans to be patriotic and buy war bonds. So, the WWII angle made this movie more interesting than I expected. We all enjoyed it.
When we got home, a DVD I'd requested at the library was waiting for us, Alabama Moon. It is the movie adaptation of one of our all-time favorite books (see my review) about a boy left on his own after his father dies, and we all enjoyed seeing it come to life on-screen (though of course, the book was better!).
At Jamie's request, I also got X-Men: First Class from the library. You may recall, we've been making our way through all of the X-Men movies. Jamie'd already seen this one, but he really wanted to share it with the rest of us. He was right - it was very good and filled in some of the questions left from the other X-Men movies about how they got started.
During one of Jamie's sick days last week, he and I watched a couple of movies on FX: first, High Crimes, starring Morgan Freeman and Ashley Judd, a movie about a woman (Judd) defending her military husband who's been accused of murder. It was very good, but I really like both Freeman and Judd so that helped!
Next, we watched Along Came a Spider, a movie adaptation of one of James Patterson's suspense novels. I'd seen it before, but Jamie hadn't. It's another movie starring Morgan Freeman (who is great!), and he enjoyed it.

Have you seen any good movies lately?

How I Improved in 2011

2012-01-05T17:21:00.003-05:00

First an admission: I am a geek and proud of it! Yup, I know I'm over-analytical. I love data!

I knew that I felt better in 2011 than in previous years and was able to do more, but seeing that improvement quantified just tickled me to no end! So, just in case there are any other geeks like me out there, here are the exciting numbers that prove I have improved...

I rate how I feel each day on a scale of 1 to 5, 5 being severely crashed and 1 being great. I just jot the number down on a calendar before bed each night, along with any symptoms, and also ratings for my level of exertion and level of stress (since I know these affect me significantly). I also note changes to medications or supplements on the calendar so I can track whether they help me.

So...drumroll please...I improved from an average of 2.6 last year to 2.4 this past year! That may not seem like much, but it's a 7% improvement over the previous year and a 12% improvement over two years ago. Qualitatively, I know that I spend far less time lying on the couch now; I used to have to lie down most of the time most days, and now I only need to lie down when I am crashed...which is much less (keep reading!).

Another way to look at it that I think is more telling is how much time I spent crashed. From the time I started keeping track 9 years ago, I have averaged between 15-23% crashed each year - that translates to the amount of time I spent severely ill, unable to do anything all day but lie on the couch (a 4 or a 5 on my rating scale). The annual average is a bit misleading because it hides the really bad months, which occasionally went as high as 50% crashed in previous years. But in 2011, my absolute worst month was 30% (when I got bronchitis and couldn't get rid of it for weeks), and my annual average was just 10%! That's a 34% improvement over last year and a 59% improvement over two years ago! Now that is worth celebrating!

So, you are probably wondering how I managed to improve so much in one year. It was clearly due to two new medications I started, plus one lifestyle management change:

In January 2011, I started taking beta blockers to help treat my Orthostatic Intolerance (yes, you have some form of OI, too, even if you aren't aware of it; it underlies many of the symptoms of ME/CFS in over 97% of patients).
In March, I started taking Immunovir, the only immune modulating prescription medication available.
I began using a heart rate monitor to help prevent crashes; this might not have had much effect on its own, but combined with the beta blockers, it allowed me to do much more without causing a post-exertional crash.

So, I greatly reduced the number of days I spend crashed on the couch by preventing post-exertional crashes (through beta blockers and the heart rate monitor), and I have greatly reduced crash days due to viral triggers with the Immunovir (which has also helped reduce my allergy symptoms and hopefully - keep your fingers crossed - helped me to finally get rid of Lyme disease). I will talk more about Immunovir in a separate blog post because it deserves a full explanation on its own.

At the same time, I was able to be more active this year than in previous years. With the help of beta blockers, I was able to increase my stamina pretty dramatically. At the start of the year, even a 15-minute walk could leave me crashed the next day, and now, on a good day, I can walk for over an hour (moderately, keeping my pulse rate below my AT) without feeling any negative effects. I firmly believe that being able to exercise mildly now will further help me to improve my stamina and my overall health. Just as the bad symptoms can cause a downward spiral, good changes can also cause a positive domino effect.

With all of this, of course, is the caveat that I definitely still have ME/CFS - these are by no means a cure. I still need at least 9 hours of sleep a night and a nap every afternoon. I still have to severely restrict my activity level and can only exercise slowly and with great caution. There are many things a normal, healthy person does every day that I would not even attempt because it would cause a crash. BUT, I am definitely making progress and doing better than I was a year ago.

So, I am starting out the new year feeling very happy with my progress and very optimistic about the future! Now if I could only get my son well enough to leave the couch behind.

Hiking in King's Canyon National Park in June 2011

New Year, Fresh Start

2012-01-03T15:33:00.000-05:00

We are having a less-than-stellar start to the new year, with both boys home sick today, the first day of school after winter break. Craig's got bronchitis - after 10 days with just sinus congestion but feeling fine, he finally succumbed to a secondary infection yesterday! Poor Jamie has been badly crashed since Christmas (not that he felt all that good before then but he was at least partly functioning). We've been trying to adjust his Lyme medications in case this is a herx reaction (and it might be, partly), but I think he is also just reacting to being exposed to Craig's infections. One of those infuriating times with CFS that you just have to wait out.

Despite these setbacks and disappointments, I feel energized and hopeful. I always feel this way at the start of a new year, even when I've been severely ill (well, maybe not the energized part). There's just something about January 1, the beginning of a brand-new year, that makes me feel optimistic, as if anything could happen in the new year.

I love reading January issues of magazines (I indulged in a bit of that during the holidays) - all of those articles about getting organized, losing weight, and starting fresh just inspire me. I came back from our trip to Oklahoma (visiting my father-in-law) ready to face my never-ending to-do list once again, feeling far less overwhelmed than usual and more positive about my chances of actually getting everything done.

I feel ready to tackle my goals anew: both the old goals that didn't get accomplished last year and also new goals that I feel like I can now tackle. Since we just came back from out of town, I haven't had a chance to review my goals yet, but I promise to share the health-related ones with you.

I even feel optimistic about ME/CFS. The pace and quality of scientific research has improved dramatically in the almost-10 years that I've been sick. There were several exciting new developments in the past few years, and even the ones that didn't pan out provided critical information for future research.

So, Happy New Year!! Here's to a happy and healthy new year, filled with hope and joy!

Is Today the First Day of the Rest of My Life?

2012-01-02T13:43:00.001-05:00

...a life free of Lyme disease? Well, I hope so, but I'm more than a little nervous.

Jamie and I went to see our Lyme doctor a couple of days before Christmas. He was pleased with Jamie's progress - he's moved up from only tolerating one doxycyline pill every 3 days to being able to take one every day. Of course, he had a bit of a set-back this past week. He went up to 2 pills a day (the dose he is supposed to take) and has been badly crashed this entire holiday week. However, his brother has had a cold at the same time, so it's hard to tell how much of this crash is herx reaction and how much is CFS immune stimulation. He's had joint pain, so at least some of it is herx reaction, so we've backed off on the dose again to one pill a day...that's still progress from where he was two months ago.

As for me, my doctor thinks it's time to try going off my Lyme meds again. This both excites and terrifies me! I have been taking antibiotics for Lyme disease since I first got the infection, in the summer of 2008. That's 3 1/2 years of daily antibiotics, plus a bunch of supplements, and additional medications to try to get at the stubborn Lyme spirochetes. That's a total of 28 extra pills a day!!

I've tried stopping the treatment twice before, and both times, my Lyme symptoms returned within a week or two. This last time, the doctor added lots of extras, including a second, more powerful antibiotic, an antifungal, and additional supplements...so we hope this has done the trick. When he told me to stop my meds, I said I'd wait until after the holidays. So, I quit taking them today. I just refilled all of our weekly medicine boxes, and it was a huge relief to have 28 less pills to worry about each day (and two less weekly reminder boxes for me).

Now, I wait. This is the tough part. The last two times I stopped, I went through a 2-month long herx reaction again when I had to restart, so I am really, really hoping this time will be different. Wish me luck! I'll let you know what happens. Hopefully, this will be the start to a healthier new year!

Happy New Year!

Movie Monday 12/26

2011-12-26T17:07:00.001-05:00

I hope all of you out there are enjoying the holiday season with your family! We had a very good Christmas - nice and quiet, mostly just the 4 of us, the way we like it! None of our family lives nearby, so we travel to see them before and after Christmas and enjoy a quiet Christmas Eve and Christmas Day. This year, my mom and her husband joined us for dinner last night (they had to catch a flight out of Philly this morning), so that was nice, too.

With school ending last week for winter break, we finally had a little bit of time in the evenings to relax with some movies with the kids:

We watched the latest Pirates of the Caribbean: On Stranger Tides with the kids. It was as good as all the others - lots of action, swashbuckling adventure, and plenty of humor. Johnny Depp was born for this role!
We also watched Super 8 with the kids, and we all loved it. It's set in 1979, about a group of kids who are filming a movie. By mistake, they capture a horrible accident on film and when they watch it later (after it gets developed - remember those days?), they realize they have the answer to some questions about very strange things going on in their town. No one else knows what they know, so it's up to them to save the entire town. Ken said it was Goonies meets the aliens, an apt description! The sci fi action and suspense are all very good, but the nostalgia is lots of fun, too.
Today, the kids watched Harry Potter: The Deathly Hallows, Part 2, one of their Christmas gifts from us (we got them the last 4 DVDs they needed to complete their Harry Potter collection).

How about you? Have you watched any good movies lately?

Here's an "after" picture of our living room after opening gifts - a joyful mess!

Hope for the Next Generation

2011-12-20T12:31:00.000-05:00

Sorry things have been quiet around here lately - just very busy with the holiday season. We spent this weekend with my mom, her husband, and my sister and her family, with our traditional early Christmas celebration (plus two birthday celebrations). It was lots of fun and great to see everyone. I felt so much better than I did last year at this time - I was really just filled with joy at being able to enjoy my family and help a bit with meals.

Mostly, I had a blast playing with my niece and nephew (that's a photo of my mom with her four grandkids). My nephew loved playing with the race car set we got him, and I had fun playing games with my niece and the rest of my family. My 5-year old nephew wanted to learn to play jacks (I have retained my elementary school skills!), but he didn't really have the dexterity for it, so he came up with a new way to play - he threw the ball up and scooped up as many jacks as he could, while it was up to me to catch the ball!

At one point, I was out on the playground/beach area (my mom and her husband live in a resort community) with my mom and my niece, and my niece (who is 9) asked me about the heart rate monitor I was wearing. That sparked a conversation about my illness that left me feeling really good. I prefer to be very open and upfront about my illness, and I believe it is really important to be honest with kids (at a level they can understand, of course). Kids can sense when something is wrong, and NOT talking about it just makes them feel more worried and scared.

My sister, on the other hand, is one of the only people left in my family who doesn't really acknowledge my illness. I can remember her asking me once in the past 10 years how I was doing - she just prefers to pretend everything is fine. Once when my nephew asked about all the pills the kids and I were taking, my sister jumped in and said, "Those are vitamins." I thought that was a rather dangerous thing to tell a little kid, that it's OK to take a dozen vitamins at once! So, I explained that we had an illness, and our doctor gave us medicine to help us feel better. I emphasized that we only take medicines that our doctors give us.

So, this weekend, when my niece asked me about my heart rate monitor, I said, "Well, you know that I have an illness, right? Well, watching my heart rate helps me to keep from getting sicker. If I keep it below a certain point, then I feel better. So, this heart rate monitor helps me to be able to play more with you without worrying about it making me sick!"

She was glad to hear that and told me that she'd learned about Lou Gehrig's disease in school. So , I reassured her that my illness doesn't usually kill people, and that medicines help me feel better, and we talked about the differences between Lou Gehrig's disease and my illness. She was fascinated by the heart rate monitor. We had a great time playing on the playground equipment and taking a short walk together.

I think it's so important to talk to kids about our illnesses. They're the next generation! I usually reassure kids about the two things they are likely to worry about most: that this isn't the kind of illness you die from (I know that technically, some have died from CFS but mine is fairly well-controlled) and that it's not the kind of illness you can catch from me (again, I know that technically we don't yet understand the infectious component of CFS but we do know it is not passed along by casual contact - otherwise, a lot more people would have CFS). Maybe with some education and honesty, there will be less ignorance and more understanding in the coming decades. My sweet niece and nephew (and my own kids and their friends) give me hope!

Public Testimony From Fall CFSAC Meeting

2011-12-13T11:17:00.001-05:00

The government has posted links to all of the public testimony that was delivered at the recent meeting of the CFS Advisory Committee (CFSAC). I haven't had a chance to read them all yet, other than those of a few close friends of mine, but what I have read so far has been moving, articulate, and heartfelt. You can read them yourself at this link - just scroll down to the public testimony section. You can also watch videos of the meeting or view slides of each of the presentations at that same link. If you are particularly interested in issues related to pediatric ME/CFS, be sure to check out the testimonies of Alexander Lopez-Majano, Denise Lopez-Majano, and Joan Militello - they are all a part of our local group for families of kids and teens with ME/CFS.

As I mentioned here before, I also submitted testimony to CFSAC but did not get a speaking spot. You can read my testimony at this blog post.

A huge thank you to all of the patients and family members who attended this meeting and gave testimony for all of us who were unable to.

Movie Monday 12/12

2011-12-12T16:56:00.000-05:00

Whew - busy time of year. Not much time for relaxing with movies. We spent our weekend filling out scholarship applications, doing make-up work (Jamie - he missed a another week of school), shopping, and finally getting our Christmas tree and decorating it! But we did watch a couple of holiday-themed comedies on Saturday evening:

I had a few new movies from the library, but the boys voted to watch an old favorite, Planes, Trains and Automobiles. It was the first time Craig had seen it. We all laughed hysterically, of course! The more times you see it, the harder you laugh because you anticipate all the good scenes and lines. "It may not be pretty, Officer, but it gets me where I want to go." Afterward, Jamie said, "Laughter really is the best medicine!" Must be because he felt much better on Sunday and went back to school today.
After the kids went to sleep, Ken and I opted for another light holiday flick, Four Christmases, starring Reese Witherspoon and Vince Vaughn. It's about a couple who have avoided their families for years and end up having to visit all four parents (both of their parents are divorced) in one day - lots of dysfunctional families and sibling angst, along with an all-star cast. It was about what you'd expect - light and fun, an enjoyable comedy with a heart.
Since all of our favorite TV shows are on hiatus, Ken and I have been watching a new series on DVD this week, Treme. It's set in New Orleans after Hurricane Katrina, and I'd heard excellent reviews of it. We are loving it so far! We used to live in New Orleans and love the music and the visuals in the show, plus the acting and the storylines are good, too. We found ourselves humming its theme song all day yesterday! Makes me miss my favorite city.

Have you seen any good movies lately?

Summary of IACFS Meeting

2011-12-07T09:19:00.001-05:00

The International Association for CFS/ME (IACFS) held its biennial meeting in Ottawa this fall. Dozens of top CFS researchers reported on their scientific findings. I wish I could attend something like this, but even the 4-hour NJ CFS Conference wiped me out last year. So, I was thrilled to find this excellent summary of the IACFS Conference, written by the renowned Dr. Lapp. He summarizes all of the key research studies in easy-to-understand language. I highly recommend you take 10 minutes to read this - there is just so much good information here. And it is all very encouraging - so much excellent scientific research going on in so many critical areas!

Movie Monday 12/5

2011-12-05T15:28:00.001-05:00

It's been a few weeks since I've written a Movie Monday post because we've been so busy we haven't had time for movies! We often watch a TV show on DVD before bed, but we rarely have time for a full movie.

As a result, I've been craving a movie lately, so I grabbed a couple off the shelf at the library last week. We only found time to watch one (because OSU was playing against their arch rival, OU, on Saturday night, so I lost Ken!)...fortunately, it was a good one:

With Craig away at a sleepover, Ken, Jamie, and I watched The Sentinel, an action-packed thriller with an intriguing plot about the Secret Service (the service that protects the President). For the first time in history, there is a traitor within the Secret Service and evidence of a plot to assassinate the President. No one knows who to trust. Michael Douglas plays a renowned agent who saved President Reagan from assassination, but when he fails his polygraph test, he becomes the main suspect and is taken off the service. His main accuser is played by Keifer Sutherland who used to be his best friend. Douglas' character is forced to go on the run until he can prove himself innocent. In supporting roles, Eva Longoria plays a rookie agent, and Kim Basinger plays the first lady. It's a fast-paced, exciting thriller that keeps you guessing. We all enjoyed it.

I'm hoping we can find a little time for some holiday movies in the next few weeks. Of course, I will have to have my annual viewing of It's a Wonderful Life and cry! Of the more recent holiday films, we really like The Holiday and Love, Actually.

I'm open to suggestions - what are some of your favorite holiday movies?

Support ME/CFS With Your Holiday Shopping!

2011-12-01T16:57:00.001-05:00

Just a reminder (because I always forget!)...

While you are doing your holiday shopping online from your couch or bed (as I have been doing this week), here are some easy ways to help support ME/CFS research:

iGive - the classic. Choose your charity and choose from hundreds of online stores. I have mine set to donate to the CFIDS Association of America. iGive also sends you updates of how much you've earned for your charity.
GoodShop - same sort of thing - choose your store and choose your charity. Between the two sites, you can find just about every online store you can think of.

Both sites also feature coupon codes (I got 50% off and free shipping yesterday at Lands' End!); the amount donated varies by store - usually between 1-5% of your purchase.

So, happy shopping and happy holidays!!

Videos from the 11/11 CFSAC Meeting

2011-11-30T08:30:00.001-05:00

The Department of Health and Human Services has posted videos from the first day of the recent CFSAC meeting in Washington on their website.

I'm not sure why they still haven't posted videos from Day 2, but there is a complete set of videos on Youtube. This Youtube Playlist lists all of the videos available there.

And here is the agenda from the meeting so you can choose which presentations you are most interested in watching.

Thanks, Denise, for the links!

The Invisible Wall

2011-11-29T16:56:00.001-05:00

We have returned, like conquering heroes, from visiting myfamily in Rochester for the Thanksgiving weekend. We finally made it up there, after a 2-year hiatus, the tripwent well, and we are all still in one piece (more or less).

I thoroughly enjoyed spending time with my family, but, ofcourse, it was tiring. I managedbetter this time than past trips, though, which tells me that I am definitelydoing a little better these days (probably due mainly to beta blockers andImmunovir). I noticed I sleptbetter; usually sleeping away from home is a huge struggle.

I have several different branches of extended family inRochester, so we had some sort of large social event every day, from Thursdaythrough Saturday, which was like a marathon for me! A single social event can totally wipe me out. But we have learned from past mistakesand scheduled in plenty of quiet, down time at my Dad’s house in between. In the old days, we would schedulethree different visits in a single day! I also went up to bed by about 9 pm every night, and I think thathelped, too.

I thoroughly enjoyed spending time with my family, but myillness forms an invisible wall that now keeps me somewhat separate fromeveryone else. There are a coupleof people who understand how challenging our daily lives are, but most of myfamily has no idea how profoundly our illnesses affect every moment of ourlives. Of course, I don’t want totalk about our illnesses at social events; that would only make people feeluncomfortable. It’s just that I amliving in a completely different world than everyone else.

It’s not that I am hiding anything on purpose or that theyare uncaring. In fact, all of myfamily knows about our illnesses and most are kind and compassionate, but, as weall know, it’s just impossible for anyone not living with these illnesses tofully understand how completely they affect every aspect of our lives. So, even in the midst of talking andlaughing with my family members, I still feel somewhat apart from them.

When everyone else is standing around the kitchen (as peopletend to do at social gatherings!), I am sitting down, at about the height oftheir belly buttons. While othersare enjoying beer, wine, and lots of cheesy appetizers, I am sipping ice waterand nibbling on plain tortilla chips. We can’t attend gatherings in the afternoon because I need my nap inorder to make it through the rest of the day. I hated having to sit on the sidelines while the rest of myfamily played football on Saturday.

More than those physical differences, though, are thedifferences that come up during conversation. My cousins were all trading stories about taking their kidsto amusement parks, Disney World, water parks, etc. Those kinds of places are like Kryptonite for someone withCFS! They began making plans forall of us to meet up at Hershey Park next summer to spend a weekend together(it’s a huge amusement park and water park); I could never manage a single daythere and Jamie probably couldn’t right now either.

My best friend from high school has taken up running…notjust any running, but marathons! She’s running 26.2 miles at a time, and I feel awful tonight because Iwent to the grocery store today. She also talked about triathlons, how much fun spinning class is, herjob, and all the travel and hiking she’s been doing. Even talking about our kids is tough because Jamie is so farfrom a normal teen right now. Ilove her – she is still my soul sister – but we seem to have little in commonanymore. It just makes me kind ofsad, you know?

I don’t want to feel these barriers between me and my lovedones. I’m used to being awhat-you-see-is-what-you-get kind of person, but that’s no longer true. People look at me and I seem normal andhealthy, but I’m not. I’m missingthe emotional closeness that comes from shared experiences. Maybe this is why I enjoy my bookgroups so much – discussing books is one thing I can do just like everyoneelse.

I hope this doesn’t sound whiny. I didn’t mean to complain because I truly did enjoy our tripand loved seeing my family and my old friend. I just felt separated from them by this invisible barrierall weekend so that my happy social occasions were slightly marred.

And thenI realized there were people I could talk to who would totallyunderstand…thanks for listening.

P.S. I discussed similar issues with social events five years ago in my post, Living in a World Apart. I guess things haven't changed very much!

Tuesday Tidbits

2011-11-22T18:43:00.001-05:00

That's my way of saying that I don't have time for an in-depth blog post this week, so I'll just tell you what's been going on around here! I should be either packing or filling our 13 medicine boxes, but I don't feel like it. Why do today what you can put off until tomorrow? I think that's my new motto (joining "better late than never").

Well, part of the reason I'm pooped out tonight is that I went into Craig's English class today and spoke about writing and reading. Actually, I spoke to two 8th grade classes today and two yesterday, 2 hours each time, so that really wore me out! It was fun, though, especially talking to the kids about what books they like and recommending others to them. I used to do a lot of public speaking and teaching (adults) in my pre-CFS career, and I do sometimes miss that kind of interaction. Contrary to what Social Security thinks, I could never manage a full day of this now!!

We had a busy weekend. First, Jamie and I traveled to NYC on Friday, along with another local family, to visit our CFS doctor (well, the two boys had appointments, not me). That was fun - we ate lunch at a great diner and browsed in a very cool (and very tiny) toy store before heading home. But it totally wiped me out! I wasn't even driving; I was just along for the ride and tried to rest on the way home. By 6 pm, my body hurt all over - I felt like someone had beat me up! And I was crashed on Saturday.

I rested up Saturday morning, then we went to a get-together with our local group of families whose teens have CFS. Having illness in common is no longer all that relevant - we have become close friends with these other families who are all great people. The kids hung out in the basement and played games, talked, and laughed a lot, and the adults relaxed in the living room and chatted. It is just so fabulous to have this group of people who totally understand what we're going through.

On Sunday, Jamie went to see The Immortals AT THE THEATER with his two best friends. This was a major event, as it's been a very long time since he's been able to go out to do anything social. He loved the movie, but unfortunately, all those activities this weekend added up, and he was badly crashed by Sunday afternoon. So, he's been home from school the last two days - Thanksgiving break starts tomorrow, so at least he won't be getting further behind. He did get to school last week, but he's not making much progress catching up because even when he is in school, he doesn't have much energy left for homework or make-up work.

On the plus side, his new homebound tutor for English came by yesterday. She has lots of experience with college application essays, so she is going to help him with that, as well as catching up in his World Lit class. I spoke with the guidance counselor today, and she thinks she has found someone to tutor him in his other subjects as well. He used to teach at Jamie's school and actually lives right here in our neighborhood, so this could work out well. She also told me that the school administration approved Jamie to drop one of his classes (AP Economics) and graduate 1 credit short. That is a huge relief to Jamie, as he was furthest behind in that class.

So, that's what's been going on around here. Very busy, as you can tell. We are planning to spend the Thanksgiving holiday with my family in Rochester, NY. Hopefully, we will all be well enough to make the trip. You may remember that we had to cancel our plans to visit on Labor Day weekend. I know it will be tiring, but I am really looking forward to seeing my family, some of whom I haven't seen in 2 years!

If you are here in the US, hope you have a very enjoyable and healthy Thanksgiving!

Summary of Latest CFSAC Meeting

2011-11-16T18:01:00.001-05:00

I plan to write a lengthy post on school accommodations for kids with ME/CFS but am still pretty run-down and just not up to it yet.

In the meantime, I thought I would post a link to an excellent summary of the latest CFS Advisory Committee meeting (for the U.S. Department of Health and Human Services) that took place last week. As you may recall, I had planned to go but with Ken traveling, me not feeling well, and being denied time for public testimony (they had more speakers than they could fit in), I did not go. They didn't videocast the meeting this time due to budget cuts, so I really had no idea what happened at last' week's meeting.

Fortunately, Jennie Spotila, Board member of the CFIDS Association and ME/CFS patient (and friend), posted a clear and comprehensive summary of the meeting on the Research 1st website. Jennie's summary is brief and easy to understand, so I encourage you to take a look. While you're there, the blog has also posted several different people's testimony from the meeting.

I was highly disappointed to see that the CFSAC meeting did not address any issues related to pediatric ME/CFS. As you may recall, our family - and many others - made a special effort in May to attend the CFSAC meeting in person to bring attention to this neglected and important issue. By the end of that meeting, the committee said they'd been very impressed by all the testimony about the plight of sick kids and teens and that they would devote part of their next meeting to hearing from pediatric experts and learning more about it. Now, I may be jumping to conclusions - perhaps it was briefly mentioned or tabled until the next meeting - but it appears that the topic was not discussed. It required a lot of time, money, and precious energy for all of us to attend that meeting, and it is discouraging that nothing seems to have changed.

OK, that's it for tonight. I'm not badly crashed this week anymore (i.e. in bed) but am still feeling really run-down and achy. Jamie is back to school this week (hurray!), but now Craig is home sick. It seems like "just" a cold he picked up at school, but that tends to knock him out completely. Always something with this exciting illness, isn't it?

Movie Monday 11/14

2011-11-14T18:37:00.001-05:00

We had a rough week here last week. Jamie was home from school from Tuesday on, and I was badly crashed from Thursday on. Maybe we were both exposed to a virus or something. I can drive myself crazy trying to figure these things out! My mom and her husband came to visit for the weekend. It was great to see them, and my mom took over the kitchen, which I really appreciated! I had been too sick to even get groceries, so she planned meals, went to the store, and did most of the cooking. What a relief!

I'm doing a little bit better today, though still not in great shape. More importantly, Jamie went back to school today and is even doing a little homework now.

Despite all the sick days, we didn't watch many movies. Jamie read 5 books last week (!) and he and I watched some TV shows On Demand during the day and on DVD with the rest of the family (mainly Bones, The Big Bang Theory, NCIS, NCIS-LA, and some episodes of Psych). We did fit in one movie, on Thursday night since the kids were off school the next day:

We finished off our X-Men trilogy that some friends lent us with X-Men: The Last Stand. It was pretty good, like the other X-Men movies - lots of action and battle scenes in this one but also some interesting plot elements, where a "cure" has been developed for people with mutations (like the X-Men). The politics of these movies have been interesting because you can see similar trends and controversies in some of our own current politics, mainly in the fear of people with differences. All in all, it's been a good series, and the boys really enjoyed it.

Have you seen any good movies lately?

(If you are also interested in what we've been reading this week, check out my book blog.)

My CFSAC Testimony: Educational Support

2011-11-09T16:25:00.001-05:00

It's been a very busy week here, with Jamie back on the couch and my husband out of town, but I thought I'd just take a moment to share my CFSAC testimony with you.

The CFS Advisory Committee to the Department of Health and Human Services (U.S.) met yesterday and today. I had requested a speaking slot, after speaking for the first time at the May meeting about the plight of kids and teens with ME/CFS. I was hoping to go in person but figured I could call in my testimony if I wasn't able to travel to DC. Unfortunately, I didn't get a speaking slot this time - they had too many people requesting time (which is a good problem to have - our invisible community is becoming more visible!). Then, we found out last week that my husband had to go out of town, so my going to DC became impossible anyway.

But I did turn in my testimony, and I think it will be included in the written copies handed out to CFSAC members. Our local parent group had agreed to focus our testimonies this time on the difficulty of getting appropriate educational support for kids and teens with ME/CFS. I have been working on a more detailed post about 504 plans and IEPs and hope to post that later this week. In the meantime, here is my (unheard) testimony:

My name is Sue Jackson, and I have had ME/CFS since March2002. Both of my sons, ages 13 and17 have it also – they’ve both been sick for seven years. I spoke at the May CFSAC meeting withmy family about the need for attention and research on pediatric ME/CFS. Today I would like to focus on theeducational challenges for children and teens struggling with this illness.

Both of our sons have managed to keep up with theirclassmates in school throughout their illnesses, but my husband and I foughtmany battles with school administrators and teachers to afford them thisright. Our sons are both verybright and are good students, and that has helped as well. We have often asked ourselves, “Whathappens to kids that struggled with school before they got sick? Or kids whose parents aren’t as able tofight for them or who aren’t as well-informed?” The answer is that those kids, as well as kids who are tooseverely ill to go to school, are getting left behind.

Through much of the past 7 years, our sons have been able toattend school at least part-time, thanks to treatment for OrthostaticIntolerance. In working to getthem the accommodations they needed at school, we encountered many barriersalong the way, most of them due to a lack of knowledge about ME/CFS. One school nurse actually called ourpediatrician and yelled at her for 45 minutes, saying she didn’t believe thedoctor’s diagnosis of CFS because “he seems fine when he’s in school,”obviously unaware that many kids(and adults) experience good days and bad days with ME/CFS.

We have run into teachers that simply refused to work withour son, saying that if he was sick, he needed to be on 100% homeboundinstruction, despite the fact that he was sometimes well enough to attendschool. When we had the backing ofa supportive principal, those teachers were forced to comply with hisaccommodations, but in some cases, we just had to work around those teachers.

Our son’s 5^th grade teacher interpreted his newlysevere cognitive dysfunction as behavioral problems, telling us that ournormally obedient, straight-A student was “a defiant, cheating, disobedientchild.” In all cases, wepersevered, gaining support wherever we could, from principals and guidance counselorsand in some cases, calling district-level or state-level administrators. We educated ourselves on the law andwhat our sons’ rights were. All ofthis, and especially the hours-long, often combative meetings, frequentlyresulted in a relapse of my own symptoms.

We’ve actually been lucky. Our stories are nothing compared to what we’ve heard fromother parents. Some kids withME/CFS have outright been denied an education, even by district and statelevels. We know of many caseswhere parents have had to hire their own tutors and/or lawyers. In the worst cases, parents trying toensure an education for their very ill children have themselves been vilified,with school administrators calling Social Services with threats of removing thechildren from their homes.

With all of the challenges that these poor kids face in justgetting through each day with the disabling symptoms of ME/CFS, it is appallingthat they also have to fight for their right to an education. Many of these battles could be preventedif school nurses, teachers, and administrators were properly educated aboutME/CFS.

In March 2001, Dr. David Bell wrote an excellent article onCFS for a publication called School Nurse News that was then sent out to school nurses around the country by theCFIDS Association, sometimes accompanied by Dr. Bell’s appearance at regionalmeetings for school nurses. Thatwas 10 years ago and very little has occurred since then to inform educatorsand support personnel about the challenges of pediatric ME/CFS.

As I mentioned in my May testimony, we desperately needresearch into pediatric ME/CFS, including a full-blown population study toestimate the number of kids and teens suffering with this illness. In addition, we need strong efforts toeducate school personnel and the public about the severity of ME/CFS, itsincidence in children and teens, and what kinds of support are needed to getthese kids the education they each deserve.

Movie Monday 11/7

2011-11-07T20:44:00.000-05:00

We had a busy but very nice weekend. My dad and his wife were visiting from out of town this weekend. It was good to see them, as always, a bit tiring, though they are easy guests.

Jamie actually played soccer on Saturday! Only the third time this season. When he plays, he's been playing the back defensive line so he doesn't have to run as much, but the coach put him on the front line as striker for a few minutes, and he made an awesome goal!! We were so happy for him - he was on top of the world. Yes, he has paid for that exertion a bit, though he did make it to school today. He's feeling crashed tonight, so we're going to watch a movie and chill out....

OK, I'm back! So, movies...a kind and generous friend read here recently that Jamie was enjoying the X-Men movies, so they lent us a trio of X-Men movies, and we have watched two so far:

Thursday evening, we watched X-Men, which I guess was the original movie of the series. I didn't think I'd enjoy this, but I have to admit it's pretty good. It's classic good guys versus bad guys during a time in the future when there is a growing population of "mutants," people born with special powers. Some people fear all mutants and want them rounded up and locked away. The X-Men are a group of mutants who have banded together to teach younger mutants and to try to keep the world safe and peace at hand. It was engaging, with lots of action and adventure.
Tonight, when Jamie decided he was too crashed to do any homework, we watched X-2, the sequel which follows the story as the lead bad guy (a mutant himself) launches an evil plot to get rid of all humans so the mutants can take over. Some of the backstory and convoluted plot are a bit confusing, but we figured it out and enjoyed it.

Have you seen any good movies lately?

(If you are also interested in what we are reading this week, check out the Monday post on my book blog.)

ME/CFS Groups on Facebook, Part 3

2011-11-03T15:14:00.002-04:00

So, I heard some of you were still having trouble accessing some of the existing ME/CFS groups on Facebook that I included in my first post on the subject. I think we have worked out the problems now!

People said they couldn't find the ME/CFS - Pacing with a Heart Rate Monitor group, so I worked with the administrator of the group, and he decided to change it from a Secret group to a Closed group (with the current members' agreement) - this will still protect the privacy of its members (posts are visible ONLY to members of the group) while making it possible for people to find the group. So, if you are interested in joining the Heart Rate Monitor group, use this link - it should (hopefully!) work now to take you to the group's page - all you will see is the group's name. Just click on the "request to join" button, and the administrator will add you to the group.

As for the ME Mums and Dads group (for parents who have ME/CFS), the administrator decided to keep the group classified as Secret which means it doesn't show up in searches (and apparently, the link I provided doesn't work). So, here's what we'll do. She made me another administrator for the group. If you are a parent with ME/CFS who wants to join this group, e-mail me at jacksonde at comcast.net (I wrote it out that way to avoid getting spammed), and we will work together to help you find the group and get added to it.

So, hopefully, that will solve the problems - sorry for the inconvenience!

The Joy of Celebrations

2011-11-01T19:02:00.002-04:00

A few years ago, I wrote a blog post about joy and how ME/CFS has helped me find more joy in everyday things. I planned to kick off a series of posts about things that bring me joy, and I wrote The Joy of the Outdoors and The Joy of Friendship, but then the project sort of fell by the wayside.

All of our Halloween fun yesterday made me realize that I haven't written about celebrations, which I think are a vital element of joy in any life!

I came by my love of celebration from my mother. When I was a kid, we celebrated everything, big and small, and I loved the atmosphere of joy and festivity. My mom was, and still is, a major party animal, so I learned from the best! When I had kids, I knew I wanted to do the same thing for them. My kids love our traditions of celebration, and now that we are dealing with chronic illness, they are even more important, a way of injecting joy and fun into our lives, even (especially) when things feel lonely and dismal.

Of course, we celebrate the big holidays, though we've had to scale back a bit since CFS. We now focus on certain elements of each holiday that are the most important to us - at Christmas, that's decorating our tree together and getting together with our oldest friends for a cookie decorating/grinch watching party (we now buy premade cookie dough!). On Halloween, our whole family gets dressed up, often with a group theme, and goes around the neighborhood trick-or-treating (I usually just hit the two nearby cul-de-sacs). We celebrate New Year's Eve at 8 pm since the kids can't stay up late (and we used to celebrate with their grandma who had Parkinson's and also couldn't stay up late), but they love our traditions, with sparkling juice, lots of noisy confetti poppers, and caps thrown all over the driveway.

We celebrate the little holidays, too. We always decorate the house - over the years, we've collected themed window stickers, decorations, and holiday-themed projects the kids made when they were little. For Valentine's Day, we give the kids little treats in the morning, hang hearts with messages written on them from their door frames while they sleep, and celebrate with a simple chocolate fondue in the evening, dipping in chunks of fruit, pretzels, and graham crackers. One year, I even put little edible groundhogs into the kids' oatmeal for Groundhog Day!

We don't need a holiday for an excuse to celebrate. Once or twice a year, I make our favorite enchiladas and we have Mexican Night, with a colorful serape on the table and a special orange-mango fizzy drink. We celebrate the start of summer by going with friends to play in a creek after school lets out. And, of course, there is always a party when we visit their grandma (my mom)!

If Jamie has had a bad week (or month) and has been stuck at home for a while, I surprise him with movies from the library or a favorite treat from the local ice cream dairy or bakery. Celebrations can be incorporated into everyday life to add an extra jolt of joy to even our restricted lives.

So, next time you are having a bad day or week or month, find a reason to celebrate and insert some extra joy into your life!

What are your favorite ways to celebrate?

Managing a Herx Reaction

2011-10-28T16:33:00.000-04:00

Well, it's a real kick in the pants when you are struggling with a disabling illness and then its treatment makes you even sicker, but that's what many people with Lyme disease have to deal with, as well as some people with ME/CFS being treated with anti-virals. It's called a Herx reaction, and, as we have seen recently with our son, it can be completely incapacitating.

What exactly is a Herx reaction? Well, for starters, the word "Herx" is a shortened nickname. Here's one of the clearest explanations I found on Lyme Disease Blog:

The Jarisch-Herxheimer reaction (or Herx for short) is an inflammatory response to antibiotic treatment for certain diseases (although some non-antibiotic treatments can produce the reaction). It’s also referred to as a “healing crisis” or “die-off,” meaning a detoxification of dead or dying bacteria and other pathogenic organisms in the body.

....A person with one of the Herx-causing infections has a certain number of tiny foreign organisms in their body. The number of infectious organisms can be in the thousands or millions. Each individual organism is made up of its own cell with its own internal structure and contents. If that cell dies through an attack by the immune system or an antibiotic drug, it bursts open and releases its contents. Millions of cells bursting at the same time introduces a significant amount of cellular material in the body. These spilled contents cause the Herxheimr reaction, When the spilled contents are cleared from the body, the reaction stops.

Historically, the theory has been that the reaction is caused by dying organisms releasing endotoxins. Recent experimental research suggests that the rapid and massive overstimulation of the patient’s immune system causes the symptoms. The immune system’s job is to recognize and attack foreign antigens in the body. When dead organisms spill their internal contents, a huge number of foreign antigens become present all at once. The body reacts by releasing immune system modulators (or cytokines) (e.g., Interleukin 6, Interleukin 8, and tumor necrosis factor, among others). These cytokines are what cause the fever, chills, and low blood pressure. Either way, the body gets assaulted and fights back.

As the blog post explains further along, the phenomenon was named with respect to syphilis treatment. You may or may not know that syphilis has a lot of similarities to Lyme disease; both are caused by a type of bacteria called spirochetes which can be very difficult to get rid of and tend to leave the blood stream and settle into joints and tissues. Given the explanation above and the immune system's role in a Herx reaction, it makes sense that some people with ME/CFS being treated for viral or retroviral infections also experience Herx reactions; as is typical, our immune systems over-react.

Unfortunately, we have had to become experts in Herx reactions because our 17-year old son, Jamie, is going through such a rough time right now. Treating babesia and bartonella (two other tick-borne infections that Jamie has as well as Lyme) can also cause Herx reactions, and the immune dysfunction just makes it all that much worse. That blog post I quoted from above says that Herx reactions can last days or sometimes as much as two weeks, but Jamie - and many others with both CFS and Lyme - has experienced a severe worsening of symptoms that has already lasted many months.

He has been so totally disabled by Herx reactions that we have become desperate to find some way to help him, so I've done a lot of research and have talked to a lot of people. Here is a list of some remedies that I've heard about to lessen Herx reactions, from our doctor, various articles, and other people:

Burbur and parsley drops (the link is to the cheapest source I could find)
Chlorella (available where supplements are sold)
Milk thistle (Jamie already took it, but I've increased the dose; it helps the liver to work more effectively, filtering out toxins; it's essential for anyone who takes a lot of supplements and/or medications)
Extra soluble fiber
Hot water and lemon juice (I just recently read this; we haven't tried it yet).
Epsom salt baths (though people with CFS have to be careful that the bath isn't too warm)
Heat treatments, like sauna and hot tubs - THESE SHOULD BE AVOIDED BY ANYONE WHO HAS ME/CFS BECAUSE THE HEAT CAN MAKE OI MUCH WORSE, MAKING YOU VERY SICK.

None of these things helped Jamie very much (some, like Chlorella, we've just added). No matter what we did, he was still completely incapacitated while on antibiotics. Lyme experts say that there is no benefit to just enduring a severe Herx reaction; in fact, if your body can not clear the toxins, then you aren't making any progress against the illness. With this in mind, I had yet another phone consultation with Jamie's Lyme doctor this week, and we decided on a new plan. Even at a very small dose, Jamie was still severely ill, so we have decided to go VERY slowly and gradually with the antibiotics. The one he is currently trying is doxycycline, so he went completely off of it until the Herx symptoms cleared and he started to feel better (for him, 5-7 days), and now he is taking just 1 pill (100 mg) every 3 days. Once he seems to tolerate that fairly well, we will increase it to one pill every two days, and so on.

So far, this seems to be working. He was able to go to school every day this week, though he is still very low in energy. He's been coming home at 3 pm each day, completely exhausted, unable to do any homework at all. Believe me, this is a huge improvement over where he was!

I'll let you know how it goes, but I thought I'd share our experiences and learnings with you because I know others are struggling with these same issues, either with Lyme or with anti-viral treatment for ME/CFS. I'd love to hear your experiences, too, and if you know of any other ways to lessen Herx reactions.

Movie Monday 10/24

2011-10-24T17:06:00.000-04:00

Well, last week was another in a long string of rough weeks. Jamie was completely incapacitated again and missed another full week of school - that's 16 days since Sept. 1. The good news is that he went back to school for a partial day today (though only because we stopped his Lyme meds again). I talked to the Lyme doctor today and think we have a plan that might allow him to move forward in his treatment without being so totally crashed. We'll see - I'll keep you posted and will write more about our plans later this week, as I finish figuring it out myself!

So, with him home and so horribly crashed last week, he watched a lot of movies on TV. With Halloween approaching, a bunch of channels were showing back-to-back horror movies, so he watched a bunch of those and scared himself! I'll try to remember some of the movies he watched (I was in the room to keep him company but trying to get some tiny bit of work done!):

FX channel was showing non-stop scary movies last week. I don't remember all the titles - some were just slasher films. Jamie watched Perfect Stranger with Halle Berry, a good thriller that Ken and I had watched before with a great twist at the end.
I came home from Craig's soccer game to find Jamie totally freaked out after watching a TV series, American Horror Stories, that he said was really scary. He swore he wouldn't watch it again but then amended that the next day to say, "only during the day when someone else is home!"
He wanted me to watch Shutter with him, a spooky ghost story he'd seen before and really liked, about a newlywed couple who move to Japan and start seeing ghosts. He was right - it was good. I prefer ghost stories to slasher/horror-type movies.
As a family, we watched some more episodes of our favorites on DVD, Bones and The Big Bang Theory. By evening, Jamie was too wiped out for a full-length movie.

Have you seen any good movies lately? Any spooky suggestions for Halloween season?

ME/CFS Groups on Facebook

2011-10-21T09:21:00.000-04:00

OK, I think we have found a solution to the problems you've been having accessing a couple of groups on Facebook.

As I posted last week, there are two Secret groups on Facebook for people with ME/CFS - ME Mums and Dads and ME/CFS - Pacing with a Heart Rate Monitor. Apparently, the links I posted here didn't work, I think because they are Secret groups (that just means the groups don't show up in searches on Facebook; the new groups I set up for teens and their parents are Closed but not Secret, meaning no one can see the posts unless they are members, but they do show up in searches). Sorry about the problems - the links work fine for me because I am already a member of both groups!

Anyway, after much debate and trial, we can't seem to find links that will work, so it appears the only way to get into one of these groups is through someone who is already a member. So, let's try something different:

If you are interested in joining the Pacing with a Heart Rate Monitor group, you can send a Facebook message to either Barnaby Fotheringham or Lee Lee Ingram, who are both administrators of the group.

If you want to join ME Mums and Dads (for people who have ME/CFS and are parents), you can send me a Facebook message at Sue Boulter Jackson. Just one thing about this approach, and I hope you won't think me rude! I generally do not "friend" people unless they are family or close friends that I know in person. I have made a few exceptions over the years, for people I have gotten to know very well online, but generally, with too many friends I don't actually know, it just becomes too overwhelming for me to keep track of. I do, however, actively participate in all of these Facebook groups, including our two new ones for teens and parents of sick kids. Believe me, between my three blogs and all of these Facebook groups, I have my hands full! I do hope you understand and don't think me rude if I don't accept your friend request.

Ok, let's try it this way - hopefully, those of you interested in joining these two groups will be able to now.

Cancer Drug May Help ME/CFS Patients

2011-10-20T09:52:00.000-04:00

Just wanted to take a moment to tell you about some very exciting news. A recent study in Norway showed that a drug used to treat cancer, Rituximab, improved symptoms in 10 out of 15 ME/CFS patients. Two of the patients were completely recovered and able to go back to work! Here's an article from New Scientist that provides a good overview of the study. Apparently, the drug works by destroying B cells in the immune system...which makes sense since immune system dysfunction is such a central part of ME/CFS.

We should know by now not to get TOO excited over preliminary research, but this is a good starting point that will hopefully be followed up by some similar studies here in the U.S. and elsewhere. The great thing is that this is a drug that is already on the market, approved to treat lymphoma (they figured out it might help with ME/CFS when they treated a lymphoma patient who also had ME/CFS and he got much better), so if it does work, it is immediately available.

On another topic, the two new Facebook groups for teens with CFS and their parents are both going really well. The teen group has 10 members so far, and the parents' group is already up to 19 members, with lots of great discussions going on at both. So, if you fit it into either of these categories, please join us!

And, I am aware of the problems with the links I posted to the ME Mums and Dads group (for parents who have CFS) and the Pacing with a Heart Monitor groups. The problems are due to the fact that these are Secret groups (the two new ones I set up and the LDN group are Closed groups but not Secret), and I am working with the administrators of both groups to try to figure things out. As soon as we do that, I will post new links. A huge thank you to those of you who let me know the links weren't working!! They work fine for me - because I am already a member of both - so I wouldn't have known of the problems without your help. Stay tuned!

Movie Monday 10/17

2011-10-17T19:51:00.002-04:00

Well, we did manage to have a nice, relaxing weekend. Jamie is still crashed from over-doing on Saturday (playing soccer, watching a HS football game, and going to his dance), but I do think this is a simple case of over-exertion and am hoping he will recover soon.

We didn't watch many movies last week - mostly just TV shows - but Jamie and I watched one on Friday night:

We watched X-Men Origins - Wolverine which Jamie had seen before. He really wanted to see it again - I wasn't too excited about it but gave it a try. I knew nothing at all about the X-Men before this movie, but apparently, it is the story of how Wolverine got his start as a superhero. I have to admit, it was a pretty good movie - lots of action, of course. And I admit, I am now a bit curious about the other X-Men...

How about you - have you seen any good movies lately?

(If you are interested in what our family has been reading this week, check out the Monday post at my book blog.)

New Online Groups for Teens and Parents!

2011-10-16T12:57:00.000-04:00

For weeks now, I've been meaning to set up a couple of new Facebook groups: one for teens with ME/CFS (and similar illnesses) and another for their parents. I have really benefited from participating in other ME/CFS-related Facebook groups, but there didn't seem to be anything available for these two groups. I finally did it this morning, after recent events made it feel urgent.

So, first the links and then some details:

Click here for teens with ME/CFS and other similar illnesses.

For parents of kids and teens with ME/CFS and other similar illnesses.

I get e-mails and blog comments every single week from teens and from parents who are desperate to connect with others in the same situation, but they don't know anyone else in their local area. In the past, I have addressed these notes individually, corresponding with people and trying to set them up so they can correspond with others. But I can't do it all, and with Facebook groups, it is easy to find lots of other people in your same situation.

Many of you will remember that I set up a local group here in Delaware last year for kids and teens with ME/CFS and their families. This local group (with families from NJ, PA, MD, DE, and even NY) has been a huge success, and we have all benefited by getting to know each other and having our own little support network. Our families get together for casual picnics and gatherings, the kids have all become great friends, and the moms often get together for lunch.

A couple of weeks ago, when Jamie was doing really badly, I sort of hit bottom emotionally and just felt like I couldn't take this any longer. I was sitting in a medical facility with Jamie, waiting (hours) for his IV, and I was ready to burst into tears. I opened my laptop and thought, "Who can I talk to who will understand?" I didn't want to burden any of my healthy friends or family - it just makes them feel bad. Then I realized I could reach out to our local group of moms. I sent an e-mail, explaining how bad things had been and how I felt like I was losing it. Within moments (literally), the nurse popped her head into our room and said, "Someone is here to see you - can I bring her back?" It was one of the moms I'd just e-mailed! She'd been in the grocery store next door when she saw my note on her phone and immediately came over to see us. She brought me into the hall, gave me a big hug and let me cry, then ran back to the store to get Jamie some Gatorade. In addition, within 10 minutes, I had e-mails from all the other moms, telling me they understood and offering all kinds of support. I was totally blown away. I want other parents to have this same kind of support.

As for teens, Jamie went to his Homecoming Dance last night at school. He lasted only 2 hours and came home in tears. He wrote this poem this morning and posted it on his regular Facebook page:

"How many times can I break till I shatter."-O.A.R
Trying to scream out the frustration swirling through mymind but I lack the energy.
My last high School Homecoming and
I'm trapped in my own body.
Oh how I wish to be free,
... the things I'd do
the person I'd be
Ifonly I were free.

And I realized that he needed the same kind of support, even when he's not able to get together physically with our local group.

SO! I set up two new Facebook groups this morning, one for teens and one for parents. Turns out it's pretty easy. If you're not familiar with how these work, here's a quick overview:

You do have to join Facebook to participate, but most teens and many parents are already on there anyway. Both new groups are Closed groups, which means that no one can read what's posted in the groups unless they are a member, postings will not appear in search engines, and I will approve the members. Once you join a group, you can post on the wall, upload photos, share links - all the stuff you would normally do on Facebook, except that no one will see it except the members of the group. You do not have to be "friends" with everyone else in the group - just being members of the same group allows you to participate. This has been great for me because I limit my Facebook friends and my regular page to just family and close friends (otherwise, it's too much for me to keep up with), but I love to interact with other people with ME/CFS in various groups (see below).

So, once again, here are the new groups:

Click here for teens with ME/CFS and other similar illnesses.

For parents of kids and teens with ME/CFS and other similar illnesses.

I specifically used the term Teens, but younger kids are OK (Facebook's official guidelines say you have to be 13 to join, but I know younger kids sometimes do - we let Craig join at 12). And slightly older is OK, too, especially for those still living at home who may feel younger than their actual age (I know how CFS can affect kids!)

There is already an existing page on Facebook for Young Adult Patients with ME CFS, Lyme, Fibromyalgia etc. and also a page for the Association for Young People with ME.

The two new groups encompass not just those officially diagnosed with ME/CFS but also kids and teens with related and similar illnesses, like OI, POTS, Lyme disease, fibromyalgia, and EDS.

There are other ME/CFS groups on Facebook that I joined and participate in regularly, including:

Low Dose Naltrexone (LDN) for Fibromyalgia and (CFS) Fatigue.
ME Mums and Dads (that's for people who have ME/CFS and are parents to children of any age, even grown children, focused on the challenges of being a parent when sick)
ME/CFS - Pacing with a Heart Monitor, a very valuable group for those using a heart rate monitor to try to avoid crashes; many members are also trying various OI treatments to reduce heart rate.
And not on Facebook...there's a group website for young adults with ME/CFS and related illnesses ("young" is defined as less than 40 years old) that is very active: HealKick (thanks for the tip, David!)

So, please use the links above to join our new groups or some of the other groups on Facebook. It's a great way to interact with other people who totally "get it." Of course, please continue to read and comment on blogs, too!

Time Out

2011-10-15T16:50:00.000-04:00

I logged on to write a post called "Taking Care of Me," then realized I already wrote one with that name, just a few months ago! As I said in that earlier post, I seem to have to keep learning the same lessons over and over again.

As I've mentioned here a lot recently, I've been feeling exhausted, overwhelmed, and frantically busy. I've had several mini breakdowns lately, including Thursday night (as I wrote here), when I said, "I just can't go on like this!" Well, I finally listened to myself.

I am canceling my plans to go to the NJ CFS Association's annual Conference on Sunday. Last Sunday, we went on a 4-hour college visit, and it took me most of the week to recover from that. I just couldn't stand the thought of feeling so totally wiped out for another week, and the conference would be an all-day 11- or 12-hour ordeal (I live about 2 hours away) that totally wiped me out last year. As soon as I made this decision, I felt an immense sense of relief, so I know it is the right thing to do.

The ironic thing is that I am doing much better health-wise and am able to do more these days, but I don't feel much better on a day-to-day basis because I am pushing against my limits constantly. I have let my activity and stress level increase along with my stamina, so I am in no better shape overall than before. As I said, I just can't go on like this anymore.

I feel lately as if my life is nothing but obligations and responsibilities. When I look back over the past week (or any of many past weeks), I can't see anything that I did for myself, for fun. My time is filled with must to-dos, and the pressure is starting to get to me. I realized yesterday that there are lots of things that I used to enjoy, that I no longer seem to have time for: reading magazines, watching movies, reading my favorite CFS blogs, camping with my family. Some of these things are trivial, some are important, but the point is that they are things I enjoy that I no longer have enough time for.

I set goals every year for myself and try to keep track of them on a weekly basis (otherwise, I write the list and forget about it until the end of the year!), and some of the items on my list I am failing miserably at. For instance, I have recognized this problem in myself before, so one of my weekly goals is "Do something fun for myself." Whole months go by when I can't think of a single thing I did toward this goal! Same with "Go outside for 10 minutes a day," "Meet Ken for lunch," "Meet with friends," and "Do something fun with the kids." See the pattern?

An online friend of mine includes progress toward her goals on her blog, and I was stunned when I saw that almost all of her goals were things for herself: learning new things, making time for things she enjoys, etc. I tried to learn from her and added a new goal to my list: "Take one mental health day each month for myself." I thought this was a brilliant, mind-blowing idea - to take a day off all to myself. I tried it in May and was surprised to find that I had trouble thinking of what I could do with a day off. Taking away all productive to-dos, I didn't know what to do with myself! I did end up enjoying the day but have yet to find time for another one!

So, I am rededicating myself to trying to find some balance in my life. I realize that I need to take better care of myself (another goal I am doing terribly at is "Rest when symptoms flare"). I have a tendency to spend all of my time and energy doing things for other people. I know that some of this is unavoidable. I am, after all, a wife and a mother to two teen boys. In addition to focusing on myself and my family, I also recognize that it is important to me to help other people, and I want that element in my life. However, I am realizing that I can help far more help to people if I'm not constantly exhausted and overwhelmed.

THIS time, I am determined not to forget how horrible it feels when I am so frantically busy and overwhelmed. THIS time, I pledge to take better care of myself and not get to the point where I am so wiped out that I am short-tempered and miserable. THIS time, I am committed to take time just for me and discover what makes me feel relaxed and happy.

What do you think? Will I be ranting and writing the same things a few months from now? It's almost like another sickness - my need to be constantly productive, always accomplishing something. I mean, granted, there is a LOT to do around here that often goes undone - it seems we are always behind. But my husband doesn't have trouble relaxing or taking time for himself. Maybe it's a flaw in our female psyches, this need to get everything done. I thought CFS had cured me of much of this destructive drive to do everything, but as my health has improved a bit, it has snuck back up on me. I know the computer is a big part of my problem.

I need help!! Do you have these same problems? Do you have any ideas on how I can learn to relax and take time for myself? Any ideas of how to remind myself of what's important in the midst of chaos?

OK, I am logging off now (I swear!) and spending a relaxing evening with my family (really, I mean it!). Enjoy the rest of the weekend.

Best Kids in the World!

2011-10-13T21:12:00.000-04:00

After another long day of cleaning, cooking, laundry, driving, picking kids up, and doctor's appointments, I plopped on the couch in exhaustion tonight (after first filling 13 weekly medicine boxes), close to tears and said, "I can't keep this up!"

Both of my sons, at different times this evening, offered to get themselves up and ready in the morning and walk to the bus stop (a fairly long walk) so that I could sleep in tomorrow morning. Then Jamie said, "Mom, you are awesome! I really don't know how you manage to do all the things you do. It is truly amazing."

Well, that is one positive side effect of living with chronic illnesses - my sons are very empathetic and caring. Don't I have the greatest kids in the world?

Latest on XMRV and WPI

2011-10-11T19:10:00.000-04:00

Ugh...I've been procrastinating on writing this blog post. By now, most of you have probably already heard most of this news. Honestly, we've just been in crisis mode here for the past month (or more), and I have been too wrapped up in taking care of Jamie and researching what might help him to have any mental energy left for summarizing the complex goings-on in the ME/CFS research world. But I feel guilty for not keeping you up to date, so I will attempt to write a brief review of the latest news.

The latest XMRV study was published a few weeks ago. Bottom line is that they were unable to reliably detect XMRV in ME/CFS patients. Here's a good summary from the New York Times. The reason this study was extra-important was that it was a multi-lab study; 15 previously-found-positive samples and 15 previously-negative samples were sent, blinded, to nine different labs, including Dr. Mikovitz's own lab at WPI and VIP Dx, the lab that has been selling and running commercial XMRV testing. None of the labs was able to reliably find XMRV in the samples. Only two labs in the entire study found any positive XMRV results at all, and none of the results was reproducible. In some instances, even the same lab came up with different answers each time it ran the same sample.

Most alarming, VIP Dx could not get reproducible results. This means that the same sample might sometimes come up positive and sometimes show negative. That lab has now been shut down; there is no longer a commercial XMRV test available.

In the aftermath of this study, WPI (The Whittemore Peterson Institute) let Dr. Mikovitz go, as explained in this Wall Street Journal article. In public statements, Dr. Mikovitz has said she is still committed to XMRV research and still has some grant money. She is currently looking for another institution to sponsor her work. WPI says, as stated in the above article, that they remain committed to ME/CFS research and specifically, research into retroviruses' role in ME/CFS.

So, what does this all mean? Is there really an XMRV? Is it involved at all with ME/CFS?

From what I've read, it seems less and less likely that XMRV is the culprit in ME/CFS; however, I don't think anyone can conclusively say that for sure (though some have!). XMRV could be just the result of lab contamination, as some claim, or it could just be something that is constantly changing and is therefore very hard to reliably detect. The big NIH XMRV studies involving hundreds of patient samples are still in progress.

If you had your own blood tested for XMRV, you can't believe the results, whether they were positive or negative. Even Dr. Mikovitz agrees with that; apparently, she recommended VIP Dx be shut down earlier. So, what about the people who tested positive and have improved on anti-retroviral drugs? Well, there are three possible scenarios: XMRV is indeed present but can not be reliably detected yet or there is another retrovirus present that has not yet been identified or the drugs had some other positive effect for reasons not yet understood. A lot of "not yets" in there, huh?

So, yes, this is a bit of a setback for us, but I don't believe we are back where we started, as some have suggested. For one thing, XMRV has brought unbelievable, tremendous attention to ME/CFS. Before XMRV, can you even imagine the NYT, WSJ, Science, Washington Post, BBC, and other major news media all covering a story related to ME/CFS? Now they routinely cover new studies and new information. We are finally getting some of the attention that this debilitating illness deserves.

With that attention comes interest (and funds!) for research. XMRV opened the door for all sorts of new research possibilities into the causes of ME/CFS, with a focus on infectious agents. Negative studies are absolutely necessary for science to move forward, in any field, and provide information that is often just as valuable as positive studies. Scientists in many fields and at many different institutions now seem eager to build on what's been done and delve into the puzzle that is ME/CFS. And that is a far cry from where we were just 5 years ago.

Changes in Lyme Treatment

2011-10-05T13:04:00.000-04:00

Once again, I'm sorry for the long silence. Last week was another very tough one - Jamie missed another four days of school - and I had a mini breakdown Friday evening when we ended up spending 4 hours at the local clinic waiting for his weekly saline IV. It's just been a very difficult and challenging time for us lately. Things are looking up a bit this week, though, and I thought you might be interested in what's been going on.

Jamie and I went to see our Lyme doctor in NJ last Thursday (part of the exhausting build-up to the breakdown!). Jamie had to lie down in the backseat on the way there, and I had to do all of the driving - I had gotten used to his help! I emphasized to the doctor just how horribly incapacitated Jamie has been.

The doctor decided to stop Flagyl, Jamie's current treatment for babesia and Lyme. He was only taking a 1/2 pill a day (typical dose is 2-3) and was still so sick he couldn't even get up off the couch. The doctor said it wasn't doing him any good right now because it was obvious that his body wasn't able to clear out the toxins (i.e. dead bugs) in his bloodstream (that's called a herx reaction), so it would be better to just quit for now, try something else, and maybe go back to the Flagyl at a later date when he can handle it better. So, now he has prescribed doxycycline, at a relatively low dose to start with (half what I take), and then adding Plaquenil two weeks later. This will target the Lyme most directly. The doctor says the strategy with multiple infections is to target whichever one has the most prominent symptoms. Lately, Jamie has had very severe joint pain which is a primary characteristic of Lyme (he was on the Flagyl to target babesia because months ago, he had severe night sweats).

So, that's the new plan. Jamie stopped taking Flagyl last Thursday and has now been off all antibiotics for 5 days. The result? He's feeling much, much better. He went back to school for a partial day on Monday and went all day Tuesday and is there again today. This is such a huge relief to all of us! Of course, he needs to start on doxycycline now which will almost certainly set off another herx reaction...but we are hoping this time it will be milder and more tolerable.

I spent all weekend online, researching how to lessen herx reactions and how to improve the methylation cycle. The Lyme doctor mentioned this might help Jamie, and I told him I knew that was a problem with people with CFS, too, and that a couple of doctors had developed protocols for treating it. Here's an article about treating the methylation cycle and a Q&A about using the simplified protocol. The problem is that the doctor who wrote the Q&A says that people with Lyme should first get rid of their infections. That's a real catch-22 because part of the reason Jamie can't get rid of his infections is because this process isn't working properly in his body. So, we may try adding just one or two of the supplements suggested instead of the full protocol.

It's horrible to think of seeing Jamie suffer again, so we've decided to give him a short break off the antibiotics, to allow him to catch up at school and maybe even go to his Homecoming dance next weekend...but then. we will need to start the doxycycline and see what happens.

I would greatly appreciate hearing from anyone who has experience with the methylation treatment protocol or with taking a break from antibiotics during Lyme treatment. It's so hard to know what are the right things to do sometimes. For now, we are just trying to take things one day at a time, as always, and enjoying this brief good period.

Parenting a Child with ME/CFS

2011-09-27T16:13:00.001-04:00

Is there any worse pain for a parent than seeing your child suffer? It just tears your heart apart, especially when there is nothing you can do to help.

As you know, Jamie, our 17-year old son, has been going through a very difficult time lately, probably due to reactions from his Lyme and babesia treatment. He missed the entire week of school last week. He finally started to perk up a bit on Saturday and Sunday, enough that he was able to do some homework and even have friends over for a couple of hours each day. So, he made it to school on Monday, but he came home feeling a bit worn out and with a headache. By the time he came downstairs for dinner, he looked (and felt) terrible - severe headache, sore eyes, exhausted again, with awful joint pain and achiness. By bedtime, he was just sobbing, finally releasing all his frustration and grief. He said to us, "I'm missing out on everything!"

Our hearts just broke...again, as they have over and over during the past seven years. We comforted him as best we could and helped him get ready for bed, but it all felt so useless. It just feels so unfair that our wonderful son should have to suffer so much. He's such a good kid (young adult, really) - kind and caring, loving life, a good and dedicated student.

I do understand that we are fortunate in many respects - that medication has helped him so much in the past 5 years and allowed him to go to school, that his younger brother is doing so well, that we have each other and so many loving friends and family. I also know that some of you reading this right now have kids in even worse shape, so believe me, I'm not complaining. I just needed to express this grief I'm feeling, and you are the only ones who understand. I can't share too much of this pain with friends and family. It just makes people feel uncomfortable.

I believe wholeheartedly that things will get better, and we are taking many steps to try to help him improve and get through this difficult period. That is my nature - to work toward improvement and to be optimistic for the future. But it hurts so much right now.

He's doing a bit better this afternoon, still not able to go to school but certainly not as bad as he was last night. No way around it but through it, right?

Movie Monday 9/26

2011-09-26T19:01:00.000-04:00

Despite such a rough week last week, we ended up having a very nice weekend - just the right balance between getting stuff done and enjoying some quiet family time. Jamie was feeling a bit better Saturday and Sunday and was able to have friends over for a couple of hours each day, so that perked him up quite a bit. He still needed a good bit of downtime, so we took advantage of that and watched some great movies:

Friday night, we all watched Limitless, about a very cool sort of sci fi concept. A newly developed pill allows the person who takes it to use ALL of his/her brain (instead of the 20% scientists estimate we normally use), which results in some amazing brain power! The main character, played by Bradley Cooper, becomes very successful taking the pills but gradually discovers there's a price to pay. We all enjoyed it, and Jamie and I agreed that CFS is like the complete opposite of taking that pill!
I went back to Redbox Saturday night, and we watched Source Code, another movie based on a very cool sci fi concept. Jake Gyllenhaal is trapped in a loop, replaying the same 8 minutes over and over again, to try to prevent a terrorist from setting off a huge bomb on a train. It's like a fast-paced, high stakes Groundhog Day. We all loved this one, too - great suspense.
Ken and I watched Adventureland after the kids went to bed and really enjoyed that one, too. Set in 1987, recent college graduate James (played by Jesse Eisenberg of The Social Network fame) is forced to return home to Pittsburgh for the summer when his trip to Europe falls through. He's not only stuck with his parents but also with a rotten job, manning the carnival games at a local amusement park. The only thing that saves his summer is his pretty co-worker, played by Kristen Stewart, but things with her are complicated. I loved the setting, the time, and the music (I graduated in 1987, too!). There are funny moments in the movie, but it's also got some depth. Lots of fun.

Have you seen any good movies lately?

How About Some Good News for A Change?

2011-09-23T15:32:00.000-04:00

I don't know about you, but it's been another rough week around here. Craig was home sick two days, and Jamie has been severely crashed all week and missed all five days of school. I'm doing OK, but we're all feeling bad for Jamie.

So, when I heard some wonderful news yesterday, I wanted to share it with you. One of our own has recovered!!

Many of you may remember Lori, the mom who blogged over at Living Chronically about her daughter's journey with ME/CFS and celiac disease. Well, that journey is over now! Jessica is well - completely and truly well - and is busy attending college and living the life of a happy, healthy young woman. She has no symptoms, she can do anything she wants without crashing, and she no longer takes any medications at all.

I talked to Lori about what helped and how she got to this point. As is usually the case, it's impossible to tell and was probably a combination of things, including a measure of good luck. Some of the treatments Jessica used that seemed to help with symptoms included:

Treating sleep dysfunction and headaches with nortriptyline,
Treating pain with Lyrica,
Treating Orthostatic Intolerance with Florinef (Jessie was one of those kids who used to think it was normal to feel dizzy and black out all the time!),
Lots of vitamins and supplements, based on bloodwork, including D3, B vitamins, multi-vitamin, fish oil, and CoQ10.

In addition - and perhaps most importantly - Jessica has celiac disease and is now on a gluten-free diet. They suspected it for years and had tried gluten-free before, but she was officially tested and diagnosed in 2008 and stayed on a strict gluten-free diet after that. Her symptoms didn't magically disappear as soon as she returned to gluten-free, but she has gradually improved over the years to where she is now.

They visited the Hunter-Hopkins Center in Charlotte, NC, and many of the treatments listed above came out of that. Jessica was officially diagnosed with ME/CFS in 2005, so it's been a long and difficult process. At one point, she had to quit attending school and finish high school online.

So, recovery IS possible and it DOES happen. Dr. Bell's studies on kids and teens show that people who get ME/CFS as kids are more likely than those of us who got sick as adults to eventually recover, though I've posted stories here before of adults who have recovered as well. I hope that hearing about Jessica's recovery inspires you and brings a smile to your face - not only in happiness for her but also in hope for all of us.

Movie Monday 9/19

2011-09-19T17:47:00.000-04:00

Rough day...all three of us were down and out today. Jamie played soccer on Saturday for the first time since spring - just three 10-minute periods, but that was enough to crash him. Craig slept over at a friend's this weekend and forgot to take his Florinef...then forgot it again Sunday morning! Plus, I think allergies are bothering him, too. As for me, I've just been doing way too much for way too many days in a row - very achy today. At least my husband is back home now, after a week away. That helps!

Not much time for movies last week, and the kids were still totally engrossed with the TV series on DVD they've been watching most of the summer - Bones, The Office, Taxi, and their most recent obsession, The Big Bang Theory. I did treat myself to one movie:

After my exhausted kids went to bed early on Saturday night, I watched Remember Me starring Robert Pattison and adorable Emile de Ravin. Annie over at It's Time to Get Over How Fragile You Are recommended it, but she also warned me it was really sad. She was right on both counts! I loved this movie; it's an in-depth character study of two people trying to recover from tragic losses in their lives who find each other. Despite its sad moments, it's really a movie about the healing power of love and family. Thanks for the tip, Annie!
While away last week, my husband watched a couple more discs from the series The Pacific. He watched Band of Brothers on previous trips and has really enjoyed both series set during World War II and produced by Tom Hanks.

Have you seen any good movies lately?

(If you are also interested in what we are reading this week, check out the Monday post at my book blog.)

New ME/CFS Research Initative

2011-09-16T19:57:00.004-04:00

Sorry for being so silent lately. It was another insanely busy week here, with all the usual culprits (school, soccer, medical appointments, etc), plus my husband was out of town all week, so I was getting the kids to all their commitments on my own. Also, my mom was visiting, and she and I hosted our book group (a wonderful, kind neighbor actually held it at her house for us; we just provided refreshments and book choices). Anyway, it's just been very hectic.

But today I read such amazing, exciting news that I had to try to find time to share it with you!

A brand-new non-profit organization has been started specifically to fund and conduct ME/CFS research! The Chronic Fatigue Initiative (I know, the name is a bit cringe-worthy, but read on), headquartered in NYC and privately funded, has initial plans for $10 million in ME/CFS research between now and 2014. No, that was not a typo - $10 million!

Take a look at their website at the above link to read more details about their plans. I was skeptical at first (it sounds too good to be true!), but their list of well-known CFS researchers participating convinced me.

The Wall Street Journal (and our good friend there, Amy Dockser Marcus) published a blog post yesterday with details about the new initiative.

Exciting news, isn't it? So, raise a glass of grape juice tonight to celebrate the new opportunities and discoveries to come!

Movie Monday 9/12

2011-09-13T08:17:00.002-04:00

Is it early enough in the morning to still count as a Monday post? Whew, yesterday was just non-stop running, and I was pretty badly crashed. Feeling better this morning, though, thanks to a good night's sleep.

We enjoyed a couple of movies this weekend:

Ken and I watched The Lincoln Lawyer Saturday night - first time in a long time we've had a chance to watch a movie on our own! We are both big fans of author Michael Connelly, so it's no surprise we enjoyed this movie based on his legal thriller. Matthew McConaughey stars as a lawyer with a reputation for representing (and often freeing) low-life clients. Then he lands a wealthy young man, played by Ryan Phillipe, accused of rape and assault and thinks he stands to make a lot of money in the case. But things aren't as they seem, and he gets pulled further and further into a tangled mess. Great suspense with lots of twists and turns. Marisa Tomei stars as his ex-wife.
When I saw Johnny English, starring Rowan Atkinson, on the library shelf, I knew the kids would love it. I was right - all the kids, including Ken!, laughed hysterically at this British slapstick comedy about a James Bond wannabe. It's basically a British version of The Pink Panther and Inspector Clousseau. Not exactly my kind of thing but good for some laughs!

Have you seen any good movies lately?

Update on CFS Teens

2011-09-10T10:58:00.000-04:00

OK, that's a weird title, but I couldn't think of anything better! Both of my teen sons have tried some new things this week, and another friend of theirs as well, so I just thought you might be interested to hear what is helping so far.

As background, both of my sons have had ME/CFS for the past 7 years. Craig, now 13, has a mild form of CFS that is completely controlled with Florinef (a treatment for Orthostatic Intolerance, a condition that affects more than 97% of CFS patients). With Florinef, Craig is symptom-free about 95% of the time and able to do anything he wants. Jamie, 17, has more severe ME/CFS, plus was diagnosed with three tick-borne infections - Lyme, Babesia, and Bartonella - 15 months ago (the infections have possibly been there for as long as 5 years). Before Lyme, Jamie did fairly well on Florinef - it allowed him to attend school mostly full-time. He has struggled for the past 4 months as a result of herx reactions from his treatments for tick-borne infections.

Craig has been doing so well that he wanted to try reducing his dose of Florinef this summer. He normally takes 0.15 mg a day (one and a half tablets), so we reduced it to just one tablet (0.1 mg) a few weeks ago. He seemed to still do well - slightly longer recovery time after sleep-overs but otherwise he seemed fine. Then school started last week. Between school, soccer practice, homework, and physical therapy for a knee injury, Craig was wiped out. He had been sleeping 12-14 hours a night during the summer (!), and could only squeeze in 11 hours a night on school nights...and that's with going to bed at 8pm. So, after seeing him struggle this week, we increased his Florinef back to his usual dose of 0.15 mg on Thursday. I also increased him from half to a full salt tablet (Thermotabs) and made sure he had a water bottle with him (he used to drink a liter of Gatorade a day but got sick of it). Wow, what a difference! Thursday evening at dinner, he was full of energy, smiling and talking...in other words, his usual exuberant self! So, we discovered this is the right dose of Florinef for him, at least during the school year.

We've started two new things for Jamie recently. We added a new medication, clonidine, to his regimen. Dr. Rowe thought it might help with sleep, OI, and also secreting more growth hormone, as I explained in an earlier post. Jamie already takes trazodone and nortriptyline to correct his sleep dysfunction, and they were working fairly well until he hit this rough period recently. So, he took a half a clonidine for one week, then upped it to a full tablet last night. It's hard to say yet, but we think it is helping. Jamie said he woke up fewer times during the night after starting it, and he seems better able to sleep later in the morning (i.e. 7 am instead of 6 am).

Jamie also got his first weekly saline IV this Thursday, as I described in my earlier post. Saline IVs can help people with CFS by increasing blood volume, which improves the symptoms of OI, thus improving just about all of the symptoms of CFS, especially energy and cognitive dysfunction. Administering the IV went well. Jamie was well-hydrated ahead of time, so the doctor started the IV easily. Jamie got 1 liter (we may increase it later), and it took about an hour. He saw some immediate improvements. He slept much better that night - said he barely even remembered waking up at all and didn't get out of bed once during the night (amazing!). He went to school on Friday - third day in a row this week - and said he had more energy than he'd had in weeks.

The problem with saline IV therapy is that its effects are only temporary. Today, he is worn out and doesn't have much energy. He just decided he won't try to play in his soccer game this morning. However, he's not totally crashed - he is working on his homework right now and is still in very good spirits. He's just being cautious and is hoping to save up enough energy to maybe have a friend over later.

A good friend of ours, a local 15-year old boy with CFS who also attends Jamie's high school, also got his first saline IV this week with about the same results. He was able to go to school the next day but not the second day after (he is not usually able to attend school as much as Jamie). Both boys may eventually work up to 2 liters IV infusion at a time, which is what Dr. Rowe (expert in OI, especially teens with CFS) does with his patients.

So, it was definitely a better week than the previous one. Jamie made it to 3 out of 4 days of school, which was great after how sick he's been recently. He seems to have finally recovered from the oral surgery he had last Monday. We'll see how the coming week goes. My husband and I keep reminding ourselves...one day at a time.

Have a good weekend!

Movie Monday 9/5

2011-09-05T15:54:00.000-04:00

As predicted on Friday, we had a quiet weekend at home, helping Jamie to rest. I wish I could say he is now in good shape, but he's still spending most of his time on the couch, a full week after his oral surgery. There has been some improvement - he's sitting up more, he says his mind feels more clear, and he's certainly acting more like himself. Saturday night, my husband said, "The spark is back in his eyes." And last night, he joined us at the dinner table for an hour for an end-of-summer crab feast. Still, it's not looking likely that he'll be able to attend school tomorrow...or perhaps at all this year. We are still hoping that some new treatments might help get him back on his feet.

So, we took it easy this weekend and watched lots of TV and movies with Jamie. I'm having trouble remembering everything we watched right now (!), but I'll try:

Just to cheer ourselves up on Friday morning, after canceling our weekend trip, we all watched Ferris Bueller's Day Off. We've all seen it before, but that only makes it funnier! Just what we needed to get our minds off our troubles and laugh.
Jamie watched Salt starring Angela Jolie, a great spy thriller that Ken and I had already seen. He'd wanted to see it for a while, so was happy when I brought it home from the library. Its twisty-turny plot keeps you guessing right till the end.
Ken and I watched The DaVinci Code with Jamie while Craig was out with friends. We'd seen it before, but I knew Jamie would love the suspenseful, clever thriller (and he did). Made me realize I need to read Dan Brown's other novels that have been sitting on my to-be-read shelf for a long time.
Craig had a friend sleep over last night, so Ken, Jamie, and I watched I Am Number Four, a sci fi thriller based on a popular YA novel. It was excellent: well-acted, exciting, and fast-paced. When it was over, Jamie said, "I have to read the book now! And the sequel!" The sequel, The Power of Six, was just released last week (in hardcover).
While I napped today, Ken and Jamie watched Battle: Los Angeles about aliens invading earth. From what I could tell, the title was accurate - lots of battle sounds! I think they both enjoyed it.

In between, we continued our marathon of Bones, introduced the kids to the classic sitcom, Taxi, and watched a few episodes of Mad Men (Ken and I).

Have you seen any good movies lately?

(If you are also interested in what our family is reading this week, check out my book blog).

CFS Grief

2011-09-02T09:00:00.000-04:00

It's been a long time since I've cried over CFS (yes, it does get better over time), but I cried this morning. Not about myself but my son. There is no worse experience in the world than seeing your child suffer and not being able to help him.

Jamie is no better, five days after his minor surgery. In fact, he seems a bit worse, definitely in the grips of a severe crash. Worse, this is not all due to his surgery this week. He's been in terrible shape since about April, probably a reaction to his treatments for Lyme, bartonella, and babesia (tick-borne illnesses).

Whatever the causes, it is extremely difficult as parents to see him lie on the couch day after day while his friends run around being normal teenagers and getting ready for their senior year of high school. My husband and I have been so upset these last few days, though of course, we try not to show it.

This kind of grieving is an integral part of living with chronic illness, but it never gets easier (less frequent, perhaps, but no less painful when it hits).

There is a very good chance that Jamie won't be able to attend school regularly this year, as he has for the past five years, since starting treatment for OI. That is so painful to consider. This is his senior year of high school; all we want is for him to be able to be a normal 17-year old.

We had to cancel our planned trip to visit my family this weekend. We were supposed to attend my cousin's wedding tonight, a big family gathering tomorrow, and spend the day at a lake with my aunt and uncle and cousins on Sunday. Instead, we're looking at yet another weekend spent in the family room.

OK, I'm trying to pull myself together and make the best of things. Jamie and I have just started watching Ferris Bueller's Day Off on DVD - guaranteed laughs!

Surgery and CFS

2011-08-31T16:42:00.000-04:00

I know I'm a bit overdue in writing this post. I was waiting so that I could tell you how easily Jamie came through his oral surgery on Monday...but, alas, that hasn't happened. He's had a severe sore throat and swollen glands since then, evidence that the stress of surgery caused a CFS flare-up/immune over-reaction. He is improving, though, slowly by surely. The swollen lymph nodes are almost back to normal. Of course, his jaw is sore and stiff, too, from the extraction of his wisdom teeth. Still, I think the surgical guidelines we used ARE helpful. Who knows? Maybe he'd be even worse off without the precautions we took.

We've been fortunate in our family. Since getting CFS, none of us has needed major surgery, only minor outpatient procedures. I had a laproscopic exploratory for ovarian pain (there was so much scar tissue, the doctor couldn't even see my right ovary!), Craig had his adenoids out when he was 10, and Jamie just had his four wisdom teeth extracted this week. All three of those surgeries were done out-patient but under full anesthesia. In all three cases, we used Dr. Lapp's wonderful recommendations for people with CFS or fibromyalgia who are undergoing surgery.

This is a great article and highly recommended. We print out copies to share with the surgeon and anesthesiologist. You can read through the detailed guidelines yourself, but most of it focuses on the fact that most people with CFS (studies show more than 97%) and many with fibromyalgia have some form of Orthostatic Intolerance and so need special consideration for surgery and anesthesia. For instance, IV fluids always help people with OI, and certain anesthesias, including nitrous oxide which is commonly used for oral surgeries like Jamie's, can worsen the effects of OI. The article also covers typical nutrient deficiencies and medication sensitivities for people with CFS and/or FM.

Of course, the details of your own experience with CFS/FM are critically important to share with all medical personnel involved with your surgery - what medications (and supplements) you take, your typical symptoms, etc. It took over an hour to review all of Jamie's medications and supplements over the phone with a nurse the week before his surgery! I offered to just fax her the list, but she wanted to do it the hard way... Supplements are just as important to discuss as medications, as they may have adverse effects for someone undergoing surgery, and you may have to stop taking certain ones a week before your surgery to protect your safety. Jamie had to stop his melatonin for a week (he is relieved to be back on it now!)

Besides giving copies of the article to everyone ahead of time, we also make sure to talk to the surgeon and the anesthesiologist the day of the surgery. This is easy to do because they come in to do a pre-surgery check anyway.

We were lucky. From Jamie's first visit to the oral surgeon, he understood Jamie's medical challenges. I don't know how familiar he was with CFS, but he certainly understood about POTS and NMH (i.e. OI). when speaking to medical personnel, I always mention POTS and NMH as well as CFS because these are common conditions that occur in non-CFS patients that they are more likely to be understood by medical personnel, even if they know nothing about CFS. As soon as he saw Jamie's medical history and list of medications, he told us he would be doing Jamie's surgery in the hospital rather than in his office as he usually does.

There were two reasons for this. In the hospital, Jamie would get IV fluids which would greatly help to prevent OI symptoms, especially after fasting before surgery. Secondly, the anesthesia typically used for oral surgeries, nitrous oxide, is a vaso-dilator, as Dr. Lapp explains in his article. This means that it dilates the blood vessels, a very bad thing for someone with OI, making it even more difficult than usual for the body to properly circulate blood to the heart and brain (it's the same reason alcohol makes us feel sicker; it is also a vaso-dilator).

If you find that your surgeon or anesthesiologist is not so understanding or doesn't want to take the time to read the article (as was the case with our anesthesiologist this time), try saying something along these lines:

"The two most important considerations are IV fluids and avoiding vaso-dilators." (if you are unusually sensitive to medications, I would include that as a third point).

So, I thought the surgery itself went well, despite the resulting crash. Jamie hasn't had severe OI symptoms since surgery, including less than his usual aches, so I do think the IV fluids helped. I'm not sure there's anyway of preventing the immune system from over-reacting due to the stress.

Just keep your fingers crossed - tomorrow is his first day of school, and I really hope he is able to attend.

Hope you find these guidelines helpful if surgery is in your future.

Movie Monday 8/29

2011-08-29T17:11:00.000-04:00

Well, we survived the hurricane, and Jamie came through his oral surgery this morning just fine. We are hoping that the IV fluids he got in the hospital will help prevent a severe crash - time will tell. He's got a sore throat and swollen glands, so that's not a good sign. He's in a lot of pain now but enjoying his smoothie. I will post again tomorrow about tips for people with CFS having surgery.

For today, how about a more fun topic? Movies! Since I skipped last Monday, today's post will cover two weeks. We actually didn't watch a lot of movies partly because it's been so hectic here and partly because the kids are still totally hooked on watching old episodes of Bones! It's a great series with a wonderful sense of humor. As for movies:

A couple of weeks ago, we watched Alice in Wonderland, the new version. It was pretty much just what you would expect from a collaboration between Tim Burton and Johnny Depp: really, really bizarre! We all enjoyed it - a very creative, colorful production, a totally new approach to Alice.
We also watched The Truman Show starring Jim Carrey with the kids. Ken and I had seen it many years ago, and the boys both loved it. It's just such an ironic, insightful look at our voyeuristic society. And talk about premonition! One year after the movie was released, the first reality TV show, Big Brother, premiered.
During the big sleepover this weekend, Ken and I watched The Hereafter, starring Matt Damon. I've wanted to see this movie ever since it was released into the theater. As its title indicates, it's about the afterlife. There are three separate stories that eventually come together: Matt Damon plays a psychic in San Francisco who can sense messages from people's dead loved ones; there's a young boy in England who suffers a crippling loss; and a well-known TV journalist in France who has a near-death experience while on vacation. I loved this thoughtful and thought-provoking movie!

Have you seen any good movies lately?

From Anxiety to Hope

2011-08-28T12:42:00.000-04:00

Sorry I have been absent for over a week. The hurricane coming through was the most relaxing part of my week! Out of 5 days, I was out of the house and on my feet for 4 of them, including an all-day college visit, a massive shopping trip, and a trip back and forth to NYC. I didn't crash until Friday evening, after NY, when I felt like someone had beat me up. I mostly rested yesterday and am feeling fine again today.

But today's post isn't about me; it's about our 17-year old son, Jamie. I've mentioned a few times recently that he's had a really rough summer. It appears to be mostly due to herx reactions from his treatment of Lyme disease, plus two other tick-borne infections, babesia and bartonella. Whatever the reason, the bottom line is that he has spent most of the summer lying on the couch in our family room, reading and watching TV. He got his full, unrestricted driver's license this summer, but he barely drove at all. He hardly saw any friends all summer either.

So, my husband, Ken, and I have been extremely worried about school starting next week. The anxiety has been building because in his current state, there's no way he'd be able to attend school full-time as he has in recent years. This is his senior year, so we have the added pressure of applying to colleges. We've been visiting them this summer, all the while wondering how on earth he'll be able to manage it.

Another source of anxiety was his annual check-up with his pediatrician last week. Jamie has only grown a quarter inch taller in two years and moved from the 90th percentile for height (where he'd been consistently since birth) to the 50th. It's been proven through research that people with CFS generally secrete less growth hormone (GH) than healthy people because GH is secreted durng deep stage 3 and stage 4 sleep, of which we rarely get enough. So, all this anxiety has been building, and we've been dreading the coming week when school starts again.

We are all feeling a lot better now, though, thanks to our visit to see Dr. Levine in NYC on Friday and some e-mail correspondence with Dr. Rowe. Both of them have been immensely helpful! This was the first time Jamie had seen Dr. Levine, though I have been her patient for about 5 years. She's an Infectious Disease doctor who specializes in CFS and is on the CFS Advisory Committee for the Department of Health and Human Services. I decided to take Jamie to see her because most of the treatments that have helped me the most have come from her. We left with a whole list of treatments to try for Jamie, to help to control his out-of-control symptoms (mostly aches and exhaustion) and try to improve his stamina:

Dr. Rowe suggested we try a new medication, clonidine, that is OK to take with Jamie's current medications and, if it is tolerated, can potentially help with sleep dysfunction (in addition to his current treatments for sleep dysfunction which help though he is still not getting enough deep sleep), Orthostatic Intolerance (currently treated with salt and Florinef though again he's gotten worse lately), and can help the body to secrete more growth hormone as well. A triple bonus!
Dr. Levine agreed to start him on weekly saline IVs. This is becoming a common practice, particularly with teen patients, and is something else Dr. Rowe frequently does. The IV usually has an immediate positive effect, increasing blood volume much more effectively than just drinking salt and fluids and improving OI, thus improving most other CFS symptoms (many of which result from OI). Another local friend who goes to school with Jamie is starting the same thing next week, so his parents have already paved the way for us and found a local doctor willing to administer the IVs. Obviously, this is only a temporary effect, but from what I've heard form others, it can really help for a few days afterward.
Dr. Levine will probably also start Jamie on low-dose naltrexone (LDN) which has helped me quite a bit. This was the #1 thing I wanted to ask her about for Jamie and was her first suggestion, so we were both on the same page with that one! She took blood for lots of tests on Friday, but Jamie's previous tests a few years ago showed very low Natural Killer cell function, which LDN can help with.
Finally, she will call us when his blood test results come in to discuss whether those present any additional treatment opportunities.

Jamie and I left her office on Friday in good spirits. After months of worry and anxiety, we now have some hope. Three treatments to try (and perhaps more) means three opportunities for improvement and a much more optimistic view of the coming school year. I was interested to hear what Jamie thought, since Ken and I have been trying to hide our anxiety from him. He told me over lunch that he's been feeling all the same anxieties and worries over all the same issues (duh! of course he has!), so he was also greatly relieved and feeling hopeful that we now have some options to try.

So, all of this has reminded me of a couple of truisms that I seem to keep relearning over and over again. One, that it's always best to get things out in the open and talk about them. And, two, that the best approach to CFS treatment is to persevere and keep trying. If one thing doesn't work, move onto the next...try, try again. Despite what we sometimes hear, there are actually lots of options for treating CFS, even though we don't know its cause yet. Different things work for different people, and we just have to keep trying. To that end, I will write the post I have been promising, about what has worked best for me and allowed me to be so active this summer. With school starting this week, my writing time will increase exponentially!

Even the hurricane this weekend worked in our favor. School has been canceled for Monday for my youngest son, pushing back the day when Seniors start to Thursday. This will give Jamie an extra day to recover from oral surgery (assuming it's not canceled tomorrow). He's having all four wisdom teeth out. Fortunately, it's being done in the hospital, so he'll get IV fluids (he may actually feel better than he's felt in weeks, other than the pain in his mouth!).

Hope is a powerful thing.

Another Exhausting Week

2011-08-19T18:25:00.000-04:00

I just don't have the mental energy to write a flowing, cohesive blog post tonight, so how about a rambling, disjointed one? (it just took me 10 minutes to think of "disjointed").

Another really exhausting week here, and Jamie and I are both in rough shape today. These last two weeks before school starts are packed full for us, mostly with medical appointments, including several out of town. So, this week, we started Craig's physical therapy (old knee problems we want to tackle before soccer season), got up early for Jamie's annual well visit, and drove to NJ and back for a visit with our Lyme doctor.

It seems that Jamie reacted badly to the two booster shots he got on Wednesday because he's been badly crashed ever since. We didn't know what was going on until last night when we noticed a big, red swollen bump on his arm. He had no reaction at all a couple of years ago to his meningitis shot, but he reacted badly to the booster this week...probably because his immune system is struggling now against Lyme plus two co-infections, in addition to the CFS. So, he's been in bad shape the past two days, exhausted with severe aches.

Normally, Jamie helps drive back and forth to NJ (about 90 minutes each way), but yesterday he felt so bad that he rode in the backseat lying down. And we usually enjoy lunch at Panera before we head back home, but this time, we just drove there, had our appointment, and got right back in the car to drive home again. By the time we got home, I was pretty exhausted, too.

My other problem is that I haven't been sleeping well this week - that's probably my main problem. I think one of my new meds (Immunovir) was overstimulating me and disrupting my sleep. It does seem to give me more energy and cut down on crashes, though. So, I reduced the dose yesterday and slept a lot better last night. Hopefully, I've got that straightened out now.

We both need to rest and recover this weekend because next week is even worse - blood tests for both boys Monday morning, more PT for Craig, a college visit Tuesday, an orthodontist appointment, Meet the Teacher night, and a trip to NYC for Jamie and I to see another doctor. The following Monday morning, Craig heads back to school, and Jamie gets oral surgery at the hospital to get all four wisdom teeth removed. The fun just goes on and on!

Time to chill out with some TV with my family...enjoy the weekend!

A Long Journey

2011-08-16T16:45:00.001-04:00

We went away this weekend on a short vacation with my extended family to the Poconos where my mom and her husband have been living. We only had to drive about 3 hours each way to get there and back, but it was light-years away from earlier family vacations when I was first sick.

There were 14 of us all together - 8 adults and 6 kids, sharing one house and all of our meals. We had a similar vacation together in the Adirondacks six years ago. In fact, I brought along a bunch of home movies and photo DVDs this weekend, and we watched a slideshow of that previous trip. As everyone else in the room exclaimed in delight and said, "Wasn't that the best vacation ever?" I just kept my mouth shut. That week stands out in my mind as the worst week of my entire life.

I was the sickest I have ever been, before or since. I had tried to warn my mother that I wasn't up to a full week with family, but she took it personally and insisted we come. By the evening of the first day there, I was plunging into the worst crash I have ever experienced. I spent three days in bed, not even able to read, doing nothing but lying in the dark with my eyes closed. I barely made it out of my room for meals. I tried to be personable, but I was just so horribly sick. I really thought I wouldn't survive the week. This was early in my illness when all of my family was in deep, deep denial about how sick I was, so they all just pretended everything was fine. It was a nightmare.

Contrast that to this past weekend...I had a great time and was able to participate in almost everything. I helped with meals, went to the beach with everyone, paddled my son's kayak, and played games with the kids. Sure, I still had to respect my limits - I took my daily nap, went to bed by 10 pm, and had to rest up a bit on Saturday morning after an active Friday - but I felt well enough to truly enjoy the vacation. And it is so wonderful to see my kids having so much fun with their cousins, building bonds that will last a lifetime.

The best part of all? Saturday night after watching some old home movies and telling stories of past escapades, we all laughed so hard there were tears pouring out of my eyes and I couldn't catch my breath. There is nothing more rejuvenating than laughing until your stomach muscles hurt! I felt as if I had my family back.

I have come a long, long way from those early years.

Yeastie Beasties

2011-08-10T13:11:00.000-04:00

Another busy week with no time for blogging! We have a long weekend coming up with my extended family, so lots of work to do to get ready and packed.

I'm way behind here. I've been meaning to bring you up-to-date on all sorts of things here, including our current battle against yeast overgrowth.

As you know, Jamie and I both have Lyme disease as well as ME/CFS. In fact, Jamie has 3 tick-borne illnesses: Lyme, bartonella, and babesia. So, we have both been on heavy-duty antibiotics for a long time (a year for Jamie and almost three years now for me). Since antibiotics kill off all kinds of bacteria - both the good stuff in the intestines as well as the bad stuff - yeast overgrowth is always a possibility.

I've had almost three years on high-dose doxcycline with no signs of trouble at all. I doubled my dose of probiotic when I started the antibiotics, and that seemed to do the trick for me. I also take oregano and olive leaf, both of which are potent anti-fungals (as well as anti-virals and antibiotics). Then, two weeks ago, I added another antibiotic, Flagyl, and within a few days, I noticed thrush on my tongue!

As for Jamie, he has struggled with yeast overgrowth for at least 6 months. I think his time on high-dose Zithromax is what did it (though it did help with his bartonella). We noticed on our vacation in June that the thrush in his mouth had gotten pretty severe. He was also experiencing other symptoms that our Lyme doctor told us were due to yeast overgrowth (terrible aches in his legs and weird itchiness on the undersides of his arms).

So, here's what we are taking each day to help combat yeast overgrowth:

4 Culturelle (a probiotic, contains lactobacillus)
4 Saccharomyces Boulardii (a probiotic that specifically targets yeast, recommended by our Lyme doctor)
4 New Chapter All-Flora - me only (my usual probiotic, includes 9 varieties, non-dairy)
Olive leaf extract (4 for me, 2 for Jamie)
2 ADP (emulsified oregano)
Drinking clove tea (me only, a friend recommended it)

With all of that, it still wasn't going away. Jamie's improved a lot, but there was still some mild thrush. I expected mine to go away easily since it had just started, but it's only slightly better. So, last Monday, I called the Lyme doctor, and he also prescribed:

100 mg Diflucan, a prescription anti-fungal, for both of us.

Jamie's continues to get better. Mine is still hanging in there!

So, that's our latest battle. Just what we needed, more bugs to fight, right? I'm interested to hear about others' experiences with yeast overgrowth, and would love to hear any tips on how to get rid of it.

Movie Monday 8/8

2011-08-08T11:27:00.000-04:00

Monday again already? We had a fairly busy weekend - yard work, birthday shopping, sleepovers. I did manage to help out with both the yard work and the shopping, with no apparent payback, so that's a very, very good thing. As for the yard work, using my heart rate monitor really helps me to stay within my limits. Without it, I know I would have overdone and crashed.

On the good side, Ken is home this week and not traveling to Texas (where he has spent the past 3 weeks!), and we did find some time to relax and watch some TV shows and one movie:

With Craig at a friend's house Saturday night, and Jamie having two friends sleep over here, Ken and I found time to watch a DVD. We saw A Dog Year starring Jeff Bridges (thanks for the recommendation, Renee!). It's an HBO movie, fairly short, and enjoyable. It's based on the memoir by Jon Katz, an author whose life was falling apart until he rescued a dog.
With the kids, we continued our summertime tradition of catching up on TV shows on DVD - finished our Glee Season 1 marathon when Ken got home, watched more of The Mentalist Season 2, Num8ers Season 1, and lots of Bones, both Season 1 and Season 3. All are great shows!

Have you seen any good movies lately?

(If you are also interested in what we are reading this week, check out the Monday post on my book blog.)

New Website on Latest ME/CFS Research

2011-08-05T11:56:00.000-04:00

Sigh...here we are at Friday again...another week where I scarcely found time to write a blog post! Summer is just so very busy for me, with my kids at home every day, plus my husband has been traveling every single week for business this past month. It's taking all my energy just to keep up with the day-to-day stuff. I took my laptop to the pool a couple of days ago, hoping to catch up a bit, but was just too worn out to do anything but lie in a lounge chair and read. I am devoting this morning to some catch-up work!

Anyway, this post is long overdue. At the end of May, the CFIDS Association of America officially launched its new website, Research 1st. It's intended to provide a one-stop shop for everything related to ME/CFS research - the latest news, summaries of important studies, media coverage, and useful links. The CAA asked me to be one of their initial reviewers of the new site, but with my 2-month long bout of bronchitis and our vacation, I never got to it until this week (bad blogger).

So, I have finally taken a look at the new site, and I am very impressed. There is a wealth of information there, and it is well-organized. It has become very difficult to keep track of all that is going on with ME/CFS research (in some ways, that's a good thing!) with all the controversies, increased media coverage, and so many different potential areas of study in this complex illness. The new Research 1st site is a great place to go to get the latest information, to read more about specific areas of research, and to find out what's new in the field, all delivered in a very factual, unbiased way.

Here are some of the features that I found most informative:

A comprehensive list of studies currently recruiting ME/CFS patients (note that some of the current studies are even being conducted by e-mail and phone, making it possible for anyone to participate);
A link to Dr. Daniel Peterson's new ME/CFS research foundation and its first two studies;
A summary of all of the major XMRV studies to date;
A very comprehensive summary of completed ME/CFS research studies (if you are feeling like nothing is happening in ME/CFS research, just read through some of these summaries!);
The Research 1st Blog, a great way to stay up-to-date on the latest ME/CFS news.

I will definitely be using this new website a lot, and I have signed up to follow the blog. Maybe that will help me to keep up a bit better than I have been this summer! Check it out for yourself.

Movie Monday 8/1

2011-08-01T19:59:00.001-04:00

I am determined to post Monday's post on Monday instead of Tuesday this week! (cutting it close, though).

Well, life has returned to normal here - there are currently 4 teen boys in our living room, playing video games and yelling, and I just fed all of them (did it smart and ordered pizza tonight!). The house looks like a tornado came though it (like I said, back to normal).

Ours boys had a fabulous time on their grandparents' sailboat, as they do every summer - that's a photo Jamie took near Block Island, Rhode Island. I did enjoy my quiet time, but it's good to have them back. I watched quite a few movies last week - let's see if you can figure out at which point Ken came back home by the movie selection!

I watched Bonneville on Monday, even though it was a bit late for a movie (I stayed up too late every night last week!). I loved this movie about three old friends who go on a cross-country road trip together to scatter the ashes of one woman's husband, starring Kathy Bates, Jessica Lange, and Joan Allen. It was warm and funny and highly recommended. Besides, it's a road trip movie! You know how I love my road trips. Watching this got me feeling so nostalgic, I got out our old photo albums from some of our first road trips with the kids (to some of the same places visited in the movie).
On Wednesday when I stayed in to just rest and recover from a busy week, I watched Eat, Pray, Love starring Julia Roberts, about a woman who embarks on a year-long journey to Italy, India, and Bali to try to find the balance she is missing in her life. I had read the memoir and enjoyed it, and I thoroughly enjoyed the movie adaptation as well. Perfect viewing for a night when I was trying to remember that sometimes I just need to take care of myself.
Thursday evening, we watched Buffalo Soldiers starring Joaquin Phoenix as a bored American soldier stationed in West Germany before the Wall fell and Ed Harris as his kind but oblivious commanding officer. In their boredom, Joaquin and the rest of the soldiers have set up a thriving business with the German black market, selling anything they can get their hands on, but they get in over their heads when they try to sell weapons to a mafia leader. The DVD box kept saying how hilarious the movie is...and it does have its funny moments, but it's a very dark kind of comedy. I don't know if I'd call any movie hilarious where just about every single character is dead by the end (I'm not saying which ones survive!). So, it was definitely dark but also funny and interesting - we enjoyed it overall.
Redbox gave me a free rental for my birthday this month (how nice!), so we celebrated our last quiet night alone together Friday with Unknown, starring Liam Neeson. It was excellent, an exciting thriller about a man who travels to Germany (yes, odd that we watched two movies in a row set in Germany) with his wife to attend a conference. He gets in an accident in a taxi and when he wakes in the hospital after a few days, he discovers that someone else has taken his identity and his place. It's an intriguing premise, and neither of us saw the twist coming (and Ken always guesses this stuff!). I almost felt guilty for watching it without the kids because Jamie would have loved this one!

Oh, and once the kids came home Saturday night, we spent the rest of the weekend in a Glee marathon, trying to get through the entire first season set of DVDs before they are due back at the library - love that show!!

Have you seen any good movies lately?

(If you are interested in what we are reading this week, check out the Monday post on my book blog.)

Taking Care of Me

2011-07-29T15:58:00.000-04:00

At one point this week when I was feeling quite frazzled and worn out and worried about my newly diagnosed friend with MS, a dear and wise friend (you know who you are!) told me:

I hope you make certain to take good care of yourself - especially right now when your friend is going through so much turmoil....To help her best, you need to make sure you take care of yourself...This is a long haul process (making it even more important for you to take care of yourself so that you can be there for the long haul).

Her words really hit home, and I took her excellent advice. I stayed in that evening - by myself - and ate a simple egg dinner (I love eggs) and watched a wonderful, girl-y movie while lying on the couch. It all felt so decadent, doing things just for me and not letting all the need-to-dos in my head escape and taunt me. It was just what I needed, and I don't know why I can never seem to remember this simple advice when I am feeling so drained and wiped out.

I suppose some of the problem is simply being a woman - we just naturally feel as if we need to take care of everyone around us, and it's easy to forget our own needs. And some of the problem is uniquely mine - despite all of the positive life lessons CFS has taught me (to slow down, to drop the perfectionism, etc.), I still tend to put a lot of pressure on myself to do everything and get everything done. It seems I am destined to keep re-learning this lesson over and over and over again.

Overall, this has been a good week for me, a rejuvenating week with the kids away and Ken away much of the week as well. It is truly amazing to me how easy it is to take care of a household of just one person! I've only run the dishwasher once since Sunday and haven't done a single load of laundry all week. The cleaning service was here a week ago, and the floor is still clean! I went grocery shopping on Monday and was done in 10 minutes (astounding). I found that cooking for myself only was so simple, and I tended to a lighter, more vegetarian diet (why buy a whole package of meat for one person?).

Of course, as I do every year during this brief respite, I didn't get nearly as much done as I expected to. For some reason, I assume being alone in the house will turn me into a productive hurricane of activity, somehow forgetting that my pace of life now doesn't leave much time or energy for actual work. But, in the end, it turned out to be a nice balance between productivity and relaxing and between some much-needed social interaction and even-more-needed alone time.

And now this little pocket of quiet is coming to an end...just as I was getting the hang of it! We will go to pick up the kids tomorrow, and life will return to its noisy, chaotic standard. I'm sure the kids will be exhausted from their week with Gramie & Pop Pop, so I'm looking forward to relaxing with them on Sunday and enjoying some favorite shows together (the first season of Glee finally came in at the library - I can't wait!).

And this time, I swear I will remember to take care of myself. No, really! Well, if I forget, perhaps you can remind me. And I will remind you - take care of yourself or you'll be no good to anyone else. Enjoy the weekend!

Accepting the Gorilla in Your House

2011-07-27T16:17:00.000-04:00

I mentioned a close friend was recently diagnosed with MS and is struggling to accept her new life. Today, another friend (thanks, Denise!) sent along this wonderful essay about acceptance that I will definitely share with my friend. In her current state of stress and anxiety, she is especially appreciative of humor, so I know this will hit the spot. Hope you enjoy it, too:

By Helen Scott-Jackson

"Acquiring a disability is a bit like getting home to find there's a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS/doctors) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to "what you've got 'ere, mate, is a gorilla, and there ain't really a lot what we can do about them, see..." before sending you back home to the gorilla's waiting arms.

The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed. Your friends will get cheesed off because when you see them - which isn't often, because they don't want to come to your house for fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing.

There are three major approaches to the gorilla in your house.

One is to ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that's on top of you, it will have an effect on you.

Another is to try and force the gorilla out, wrestling constantly with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle. However, every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim victory, and tell the media that it's a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers just aren't doing it right due to sloppy thinking or lack of commitment. The 99 other gorilla-wrestlers won't have the time or energy to argue.

I have known people spend the best years of their life and tens of thousands of pounds trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won't get their pre-gorilla lives back. They'll be older, skint, exhausted, and constantly afraid that the gorilla may well come back.

The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss about ways to accommodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.

Some people get really upset about this and throw around accusations of "giving up" and "not even trying". They even suggest that you enjoy having a gorilla around because of the attention it gets you (while ignoring the massive pile of steaming gorilla-turds in your bedroom every morning and night, not to mention your weekly bill for bananas). The best way to deal with these people is to smile and remind yourself that one day, they too will have a gorilla in their house."

I especially like that last paragraph! If you'd prefer to listen to it, here is a Youtube video of someone reading it.

Ah, nothing like a good laugh to brighten your day!

Movie Tuesday 7/26

2011-07-26T16:22:00.000-04:00

(sigh)...Tuesday afternoon (almost evening) already, and I still haven't written my usual Monday post, let alone any posts last week. Things have been very busy lately, to say the least.

One of my closest friends has recently been diagnosed with MS, and she is really struggling emotionally. She is one of the few people that knew me well both before and after CFS and was there for me every step of the way, so I am trying to be there for her now. Last week, I had her two boys (best friends of my own boys) over here most days, and this week, with my kids away for the week, I am trying to spend lots of time with her and support her.

On the plus side, yes, my boys are away for the week - on their annual sailing trip with their grandparents - so I am also trying to enjoy the very rare peace and solitude! I had hoped (as I do every year - will I ever learn?) to get caught up on all sorts of things this week, but it's not really working out that way. As you can see, I am still behind!

Anyway, last week was a crazy busy blur filled with lots of teen boys (with big appetites), packing the kids up for their trip, and this weekend, driving them to CT. Then, Ken surprised me with an overnight getaway on Saturday for my birthday, which was very nice.

So, there was no time for movies last week, though the kids and I still squeezed in a few episodes of The Mentalist and Bones. On Sunday night, after Ken left for a trip, I was a total lazy bum and watched movies (chick flicks!) for hours:

Nine Lives was a Sundance winner, a thoughtful combination of vignettes about nine different women all going through different challenges in their lives. Each vignette was only about 12-15 minutes, so it was an unusual kind of movie, though the stories did begin to intersect a bit partway through. I enjoyed it (and Ken wouldn't have!).
Then for some pure fun fluff, I watched a couple of movies on FX. The first was 13 Going on 30, a fairly predictable but pleasant story about a 13-year old girl who wishes she could skip her painful adolescence and be 30, and then, of course, her wish comes true and it isn't quite what she thought it would be. It was cute and fun, and I liked Jennifer Garner and Mark Ruffalo in the lead roles. I especially enjoyed the 80's scenes when she was 13!
I really meant to go upstairs and read after that but got sucked into the next FX movie as well! The Proposal was a typical romantic comedy starring Sandra Bullock who I really like. She played a hard-ass NYC editor (much like Jennifer Garner's character in the previous movie!) whose work visa expires and is in danger of being deported to Canada. Instead, she orders her executive assistant to marry her so she can stay. They go to Alaska to meet his family and put on a good show for the INS and...well, I'm sure you can guess the rest. Again, predictable but pleasant fluff!

Have you seen any good movies lately?

(If you are interested in what we're reading this week, check out the Monday post on my book blog.)

Movie Monday 7/18

2011-07-18T18:37:00.000-04:00

Ah, today was a very quiet day around here. The boys were still wiped out from a Saturday night sleep-over, plus Jamie and I were both still tired from visiting University of Delaware on Saturday (LOTS of walking!).

We did, however, find some time for movies this weekend, and they were all great:

How about the big news first? We actually saw a movie in the theater! Yup, the only one we get to each year...Harry Potter (what will we do now that the series is finished?). We took the boys and a friend of theirs to see Harry Potter and the Deathly Hallows, Part 2, yesterday, and it was fabulous, of course. I also finished re-reading the book yesterday, and the boys and their friend watched movie #6 and #7, part 1, to catch their friend up before we went, so it was an all-Harry Potter day. Lots of fun! The movie was excellent, just like all the others, and a great ending to the series.
Friday night, we watched Toy Story 3 with the kids, one of many big movies we meant to see in the theater and just never did. It was wonderful, just as everyone said it was. The whole series is just so incredibly clever, plus funny and touching. I cried when Andy left for college (and Craig made fun of me again!). Whatever will I do next year when it is my own Jamie leaving for college? I think he teared up a bit, too. Only Pixar can make me cry over animated characters (I cried at Up, too).
While the boys were enjoying their sleepover Saturday night, Ken and I watched Pirate Radio and loved it! It's about a pirate radio station on a boat off the coast of England in the 60's (apparently the regular British radio wouldn't play any rock 'n roll). The disc jockeys are hilarious (one of whom is played by Philip Seymour Hoffman), the story is lots of fun, and the soundtrack is amazing! Sex, drugs, and rock 'n roll...what's not to like?
Finally, we have been using the summertime TV lull to catch up on some old favorite TV shows and get into some new ones. Resting today, the boys watched back-to-back episodes of The Mentalist all afternoon! We just started watching Bones this past season, so we're having fun watching season 1 and seeing how the series started. And Ken and I are continuing to make our way (slowly) through past seasons of Mad Men.

Have you seen any good movies lately?

(If you are interested in what my family and I are reading this week, check out the Monday post on my book blog.)

Summertime and the Living is...Crazy?

2011-07-15T11:29:00.000-04:00

Whew. Isn't summer supposed to be relaxed and easy? Vacation was nice, with no to-do list or errands to run, but ever since we returned, I feel like I've been running on a giant gerbil wheel!

The kids and I have been running non-stop with doctor's appointments, shopping, errands, etc. And most of what is keeping me so busy is all stuff that needs to be done again and again, so it doesn't seem like I'm actually making any forward progress - gerbil wheel, remember? I've hardly done anything at all with respect to writing (supposedly my job!) since I got back.

Also, my sons are both teenagers now, so they're less content to just play here at the house with their friends. My youngest has been needing rides all over town ever since we got back. The only good aspect of this is that my oldest can now drive himself, so he has been helping with the taxi service a bit and taking care of his own driving needs.

So, the boys are out right now, and I am enjoying this rare moment of quiet solitude. They went to Gamestop to buy a new game with some gift cards they had, and I am thrilled that I do not have to accompany them on this mission! I am really missing my quiet, productive mornings to myself that I enjoy during the school year.

On the other hand, it is a huge relief to us not to have to worry about my oldest feeling well enough to go to school or how he will ever make-up all the work he's missed. Summer is a lovely respite from all that anxiety, when he can just lie on the couch and spend a day watching movies whenever he needs to. It's also nice having a break from homework, which makes our evenings stressful. When your kids have to be in bed by 8 pm (and sometimes come home from school exhausted), it can be a challenge to fit in hours of homework, along with soccer and after-school activities. And I don't have to get up at 7 am every day (nor my husband at 6 am).

There are definite advantages to summertime. I just need to find some time (or make some time) to relax and take care of myself. The boys will be spending a week on their grandparents' sailboat soon, and I am looking forward to that week alone, when I can rest up and maybe even catch up.

Well, it's 11:30 am on a Friday, so I have decided that I am off-duty for the weekend! Well, at least until tomorrow morning when we have a college visit with Jamie...

Rejected!

2011-07-12T16:47:00.000-04:00

I returned home from vacation to find a response from the Social Security Administration in my mail.

The good news is that they have determined I am not disabled and can still work full-time as a management consultant - hey, isn't that great? I wish I knew that years ago... think of all the income I could have been earning!

Specifically, they said:

We have determined that your condition was not disabling on any date...

While your conditions caused you to experience occasional bouts of extreme fatigue, the evidence shows your energy level was adequate for your daily activities. Based on your description of the job you performed as a consultant, we have concluded that you have the ability to perform this same type of work as it is usually performed in the national economy.

Even though I expected to be rejected, this wording still feels like a slap in the face. My state, Delaware, has one of the lowest approval rates in the U.S. (I think we're fourth worst with only a 37% approval rate in the first step).

I talked to my lawyer today, and they said it's no big deal, to be expected, and they will file the appeal for me. I kept asking in-depth questions about what else I could send in to prove I'm disabled, but my contact just laughed and told me I'm reading way too much into what is likely a form rejection letter. She said this is all normal procedure, they'll take care of it and will let me now if they need anything else.

So, more waiting now.

Movie Monday 7/11

2011-07-11T20:49:00.000-04:00

I better hurry....I'm running out of Monday!

Very hectic day. My husband had his first-ever colonoscopy today, so I had to take him which made for a long morning of waiting (everything is good and he doesn't have to go back for 10 years). That, plus running my younger son and his friends all over town pretty much wore me out. And I didn't get my usual Monday blog time either!

So, movies. Since we returned from vacation last week, we have watched a few oldies but goodies - all movies Ken and I had seen before (some many years ago) but new to the kids:

We ate at a Bubba Gump's restaurant in California, so we decided the kids needed to see Forrest Gump when we got home so they'd understand all the memorobilia and sayings they saw. The movie is a cultural icon; it's just so clever. We all enjoyed it and laughed a lot (and I cried!).
At the urging of a 92-year old woman we met in California (my aunt runs a care home), we watched Cocoon with the kids when we got home. They weren't too thrilled with my description of the movie (it's hard to describe without giving too much away) but ended up loving it. Another very clever, funny, heart-warming movie. They just loved the old people (but of course, if you say it's a movie about old people, it sounds really boring).
Tonight, we watched Ghost Town, a very funny romantic comedy. Again, I had trouble convincing the kids it was good (you'd think they'd trust me by now!), but when they saw it starred Ricky Gervais, they were sold. They ended up loving it. Gervais is absolutely hilarious in this movie as a socially inept dentist who can see dead people. Greg Kinnear and Tea Leoni are also great in it.

How about you - have you seen any good movies lately?

The Afternoon Slump

2011-07-08T16:53:00.000-04:00

I hate afternoons. Maybe that seems severe, but it's a consistent low point for me, every day. I was just lying on my bed after my nap, trying to find the energy to get up and write a more in-depth blog post on another topic, and I just...couldn't...do...it.

I know everyone with ME/CFS is different and many of us have different high and low points, but my daily rhythm is the same, day after day.

As long as I get enough sleep (at least 9 hours, 10 is better), then I usually wake up feeling OK. Morning is my productive time of day. Once I've had breakfast (I wake up starving, thanks to low blood sugar) and my medications, I usually have some energy and can get some things done. Sure, I have bad crash days like everyone else, but with my current regimen of medications, I can often function almost normally in the morning. I spend some time on the laptop, make phone calls, try to work a little, and can even usually manage some errands.

Afternoon is a whole different story. Once I've had lunch (again, usually starving by noon!), it's all downhill. I learned early on in my illness that preventative rest is very important for me, so I take a nap every day after lunch. No matter how good I feel during the morning hours, I am ready to lie down and rest by early afternoon. I do actually sleep during my rest time, and my entire family (and my kids' friends!) know this is a sacred ritual for me. I take two Valerian (a mild herbal sedative) to help me relax, darken my bedroom, and cover my eyes. I usually read for a little while first in bed, but then I close my eyes and almost always fall asleep (another thing that helps me fall asleep is to put on warm socks - I read somewhere that warming your feet helps you sleep and it's true!).

As much as I need that nap, I usually wake up feeling groggy at first. During that post-nap period of late afternoon (worst time of day for me), I have no energy. I feel like my limbs are filled with wet cement. Even when there are urgent things I need to do, I can barely motivate myself to do anything. I just want to lie in bed with my book or on the couch watching mindless TV. My brain, which was lively and functioning well hours before, feels sluggish and slow. I have learned not to schedule anything in the late afternoons, so I can just go with the flow and rest. This is the time I generally set aside for visiting blogs and for writing my own blog (which explains why I haven't been keeping up with them very well!).

By dinnertime, I am usually starting to perk up, though I often have to force myself up off the couch to make dinner. Once I eat dinner, I usually feel OK again; I don't have the high energy of morning, but I am able to enjoy my evening (this is why we often eat dinner very early, at 5-6 pm). By about 8 pm, I am wearing down a bit and glad to spend an hour or two relaxing with a movie or TV show with my family. I go to bed about 10 or 11 (in summer) and start the cycle all over again.

Despite feeling so rotten after my nap, I know I am even worse if I skip it. Several times on vacation, I wasn't able to take my nap until 4 or 5 pm, and I really suffered for it! By 3 pm, I can hardly keep my eyes open, and by 4 pm, full-blown crash symptoms are starting to creep in.

So, I know the nap helps, but I still dread the late afternoon.

Oh, shoot....it's almost 5 pm. I'll have to drag myself up to get dinner ready soon.

How about you? What's your daily rhythm? Do you also dread afternoons or do you have your own slump at a different time of day?

Back From Vacation!!

2011-07-02T17:55:00.000-04:00

Hi, everyone! We arrived back home at 2 am this morning from our 3-week vacation in California. Sorry to just sort of disappear, but I didn't want to announce on the internet that we'd be gone for 3 weeks. Also, I was seriously ill with bronchitis before we left, so I had no time at all for blog posts the week before the trip. Thanks to those of you who checked in on me and asked if I was OK.

I have 882 e-mails, a huge bin of mail, piles of dirty laundry, and a washing machine that's been holding wet towels for 3 weeks (eww!), but I'm too exhausted to deal with any of it. I'm too worn out for blog posting, either, but it just occurred to me that it might be nice to talk to people who would understand.

Don't get me wrong - it was a fabulous vacation! We visited mountains, beaches, waterfalls, and cities. We camped and stayed in nice hotels and even spent two nights in a treehouse! We've taken a lot of great trips, and this was one of the best.

But, I got very, very sick while we were out there. The bronchitis I had before we left came back with a vengeance during the second week of the trip, and we spent a half a day trying to get through to my doctor to refill my antibiotics. So, now here I am, after another 8 days on abx (10 days for the first round), and I am still horribly sick - still very congested plus totally exhausted. Of course, despite being so sick, I just kept going and pushing myself. I didn't want to miss out on anything or ruin my family's vacation. And I DID enjoy it, but I know I pushed way too far.

So, I am trying to rest, though it's hard with so much to do. I suspect I will be back at the doctor's office when they re-open after the holiday weekend.

I probably won't be posting much this weekend, but in the meantime, please feel free to take a look at our family trip blog if you'd like to see pictures of how we spent the past 3 weeks. If you scroll down to June 10, 2011, you can see the posts in order.

Enjoy the holiday weekend - I missed you guys!

Movie Monday 6/6

2011-06-06T15:43:00.000-04:00

Well, I am finally coming up for air after 10 days spent completely incapacitated. Whew, this was a bad one. As always with this particular type of crash, I ended up with a bad case of bronchitis. I finally started to feel better this morning. My oldest son, Jamie, says he is feeling a little better, too - he's been in bad shape for weeks now, probably a reaction to his Lyme/bartonella treatment. So, we've had a rough time here.

My dad and his wife came to visit this weekend, but we were pretty dull! Jamie and I were both stuck lying on the couch (we took turns), and we watched a lot of TV. We did see a couple of movies to break the monotony:

Saturday night, we all watched The Green Hornet. I expected a typical superhero movie, but this was more of a comedy (Craig told me I should have known that since Seth Rogen is the star). It was very silly and actually pretty funny. Since laughs were just what we needed, we all enjoyed it.
Craig went to the pool with a friend Sunday, and Jamie and I were still feeling awful, so we browsed through the On-Demand movie choices and watched The X-Files Movie with Jamie. Ken and I have seen it (maybe twice) before - we were big X-Files fans - but Jamie has never seen the show or the movies. We explained it was about two FBI agents investigating paranormal stuff, and his eyes lit up! He liked it very much and is now looking forward to watching the old TV episodes this summer.
With school winding down, the boys don't have as much work to do in the evenings (well, Jamie just hasn't had the energy for much work), so went back to the On-Demand movie menu last night and ended up watching Get Shorty with the boys. Ken and I saw it years ago, but we enjoyed watching it again with the boys. Craig thought it was a bit too complicated (which it is!), but Jamie loved it. John Travolta is just so good in that role. We'll have to rent Pulp Fiction for Jamie, too.

Well, we probably won't be watching any more movies for a while. The boys have final exams this week, and I need to make up for those 10 days spent in bed and on the couch. We have very little time now to get ready for our upcoming vacation. Busy, busy! Of course, I will have to be careful not to get too active too soon.

Have you seen any good movies lately?

Science Requests Retraction of Original XMRV Paper

2011-06-02T09:06:00.000-04:00

XMRV and CFS are once again being splashed across all the major news media this week, though this time it's a big step backward.

The editors of the magazine Science, which published the seminal XMRV paper in October 2009, have issued a request to the paper's authors that they retract the paper, in light of the negative XMRV studies that have been published lately. This news, with a strong negative spin, has been reported in all the major news media, from NPR to the Wall Street Journal to Scientific American, plus in many local papers and news shows and as far away as Australia. Here's a short summary from the New York Times.

Of course, Dr. Mikovitz of the Whittemore-Peterson Institute issued a response. You can read it at the WPI website (click on the two documents posted on May 31, 2011). She once again defends their original research, points out flaws in the contamination theories, and states that this action is premature.

I try to stay away from all the various conspiracy theories that tend to circulate around ME/CFS, but this request from Science is so ludicrous, so premature that it's hard not to think that someone really is out to get us. Most knowledgeable scientists (other than one or two on the fringe) agree that this subject is far from closed and that more research is needed. In fact, a couple of huge, government-sponsored, multi-center studies are in progress right now. Why on earth would anyone try to cut off debate right in the middle of all this? It goes against all principles of scientific study.

Let's just hope that logic and science prevail, so we can get more data and more information before jumping to any conclusions. Unfortunately, though, no matter what happens going forward, the damage has already been done with all of this negative media coverage, and we are once again in the position of defending ourselves and our right to full scientific investigation.

Movie Tuesday 5/31

2011-05-31T15:32:00.000-04:00

The Monday holiday has left me a day behind! That, plus a severe crash.

This is no "oops, I did too much yesterday" crash but one of those "whoa, my immune system has gone bonkers" crashes that only hits me about once a year or so. It started Saturday evening, out of the blue - sore throat so bad it felt like I'd swallowed rusty nails, with terrible flu-like aches. These exact same symptoms - in this exact same pattern - are how my CFS began 9 years ago, and I go through an episode like this once or twice a year. Last time was September, 8 months ago.

So, I spent most of the holiday weekend in bed. Craig was the only one in our family who had a busy social life this weekend, so Ken, Jamie, and I enjoyed a couple of movies:

Jamie and I have been wanting to see It's Kind of a Funny Story for ages (the previews just looked good to us), and it lived up to our expectations. It's a sweet, funny, warm story about a 16-year old boy who is feeling overwhelmed and suicidal. He checks himself into a psychiatric ward which requires that he stay for at least 5 days for evaluation. The teen ward is closed for renovations, so he finds himself among mostly adults with all sorts of mental illnesses. He becomes friends with Bobby, a suicidal adult who is going through a rough time, and attracted to Noelle, a depressed teen like himself. I know a drama that takes place in a mental institution doesn't sound like much fun, but it is! Well-written and well-acted. We all enjoyed it.
Sunday night, the three of us watched The Black Swan, a super-creepy psycho-sexual-thriller starring Natalie Portman. It wasn't as scary as we thought it might be, but it was very, very bizarre, basically the story of a ballerina who feels threatened by a new arrival and goes a little bonkers (OK, more than a little). Weird.

Meanwhile, I have been reading a really amazing book - perfect for sick days in bed because I can hardly stand to set it down. Check out my book blog for a summary of what we are all reading this week.

Have you seen any good movies lately?

The Latest XMRV Study

2011-05-27T15:56:00.000-04:00

By now, many of you have probably heard about the latest study on XMRV in ME/CFS, conducted by Dr. Singh and published in Journal of Virology a few weeks ago. I apologize for the late posting on this, but I wanted to gather information and opinions from several sources, especially a response from the Whittemore-Peterson Institute, before attempting to explain it.

So, here's the scoop, in brief:

Singh and her colleagues reported in the May 4, 2011, issue of Journal of Virology that they were unable to find any evidence of XMRV in any of the ME/CFS patients they tested. What sets this study apart from many of the other negative studies is that Dr. Singh expected to find XMRV, consulted with Dr. Mikovitz, author of the original XMRV study at WPI, and used multiple methods to try to detect XMRV. They analyzed blood samples from 100 ME/CFS patients and 200 healthy controls. Even Dr. Mikovitz said she was "astounded" that Dr. Singh didn't find XMRV. Dr. Singh also says she had problems with contamination. Here is an article from Science that summarizes the study pretty clearly.
Though this sounds pretty grim, Dr. Mikovitz issued a response from WPI (to read it, scroll down to May 9 on this News page). She clarifies some misconceptions about the Singh study and continues to defend her original positive XMRV study, published in Science last October. She also further explains how WPI has made sure that there are no contamination issues in their lab.
Suzanne Vernon, Scientific Director of the CFIDS Association issued a detailed analysis of the Singh paper that explains the methods and approach used, as well as the results. In her conclusion, she explains that the two huge multi-center studies of XMRV in blood sponsored by the Department of Health & Human Services (DHHS) are still going forward and that no matter how things turn out, WPI has done some amazing work and XMRV has brought much-needed attention to ME/CFS from the scientific community and the general public.
The International ME Association also issued its own analysis of the new study. This is a highly technical document that delves into the details of the methods used in the Singh study. Its conclusions suggest that the testing methods in this study were not adequate to detect XMRV.
While all this arguing is going on, WPI has published a new study that found a unique immune response in ME/CFS patients with XMRV, which would seem to provide new evidence for XMRV's role in ME/CFS.

So, once again, we have an XMRV study with multiple differing views of its outcome. I'm not a virologist and don't understand the details of all the technical arguments over methodology, but it seems clear to me that these issues are not yet settled. Certainly, I hope that WPI is right about XMRV - that would mean some answers for us, finally - but they still need to convince the scientific community. Perhaps this new study on immune response will help.

Bottom Line: Unfortunately, it seems to be more of the same - wait and see. WPI continues its work into the role of XMRV in ME/CFS, the DHHS is moving forward (albeit slowly, at the pace of government) on its huge, multi-center studies of XMRV in ME/CFS, and we just have to be patient and wait for the scientific community to work it all out.

Looking for Kids/Teens with ME/CFS Near San Francisco

2011-05-26T17:40:00.001-04:00

A friend passed this request along to me:

"The SF Chronicle published an article on the protest in front of DHHS at the CFSAC meeting. Aside from that, the reporter on the case, Erin Allday, is interested specifically in writing an article about children with CFS in the Bay Area.

If you/ your child is interested or if you know someone who might be interested, you can e-mail me and I will pass your information along. Just click on my profile and use the "E-mail Me" link.

So, if you know of a child or teen with ME/CFS in the San Francisco Bay area who would be willing to be interviewed (or whose parents would be willing to be interviewed), please follow up. We can use all the publicity we can get!

Movie Monday 5/23

2011-05-23T18:53:00.001-04:00

Busy, busy, busy week and weekend, so not much time for movies lately. We're all pretty tired today, after spending the weekend at soccer games, doing yardwork, cooking (me), and vacation planning.

Actually, the yardwork was quite a milestone for me. Craig mowed the lawn (a new development that makes Ken happy!), and Ken worked most of the day Sunday, but the big news is that I weeded for about 40 minutes and....(drumroll, please)...did not crash today! I did see, however, why weeding has always crashed me before. Even with my beta blockers, within about 5 minutes of going out there, my heart rate was already up against my anaerobic threshold! Amazing how much I've learned from using a heart rate monitor.

Anyway, Ken and I did squeeze in one movie Saturday night:

We watched How Do You Know, a romantic comedy starring Reese Witherspoon. It was a fun, light-hearted movie, just what we needed. I'm a big fan of Reese (very disappointed I missed seeing her at our local produce stand a few years back when she was visiting her then-in-laws). She's about my age (mid-40's), almost exactly my height, has two kids like me...and was playing a 31-year old athlete in this movie quite convincingly! She played a professional softball player cut from the US team and unsure what to do next, caught between two guys - a ditzy pro baseball player, played very well by Owen Wilson, and a nice guy caught in the midst of a criminal investigation, played by Paul Rudd. Jack Nicholson (another favorite) plays his somewhat evil father. Light and fun entertainment!

Have you seen any good movies lately?

P.S. If you are interested in what my family and I are reading this week, check out my Monday post on my book blog.

CFSAC Testimony From Two Mothers

2011-05-20T09:41:00.000-04:00

OK, you better get the box of Kleenex out for this one. Here are two more videos of testimony from last week's CFSAC meeting in Washington, DC. Both of them are mothers, talking about their sons (one has two sons with ME/CFS; the other has three sons who are ill). I found both of these very, very moving and powerful, and I think the committee members did also.

This is Denise, a good friend of mine, whose two sons, ages 18 and 20, have both been severely disabled by ME/CFS for the past 5-6 years. She is also the person who coordinated the whole Speak Up for ME event to bring attention to kids, teens, and young people with ME/CFS:

And this is Katie, a mom I met for the first time in Washington, but with whom I immediately felt a connection. She has three sons who have been severely affected by ME/CFS for many years; her sons are now almost all grown up. Her story of her oldest son, Bill, brought me a glimmer of hope for my own sons' futures:

I just listened to these both again before posting them, and they both again brought me to tears. I think you will see why these moving testimonies led the CFSAC to focus on pediatric ME/CFS in their next meeting.

These two moms - and me as well - sincerely hope that by telling our stories, we were also representing the many thousands of kids across the US and all over the world who weren't able to be there to speak for themselves. We know you are out there, and you are not alone.

Listen to Radio Show on ME/CFS

2011-05-17T18:24:00.000-04:00

Last night, I was on a radio show on ME/CFS broadcast out of Colorado, along with MCWPA founder Tina Tidmore and young ME/CFS patient Kitty. I think the show went well - the three of us were able to pack in a lot of factual information, and the host seemed fascinated and even expressed interest in perhaps having us on again (this was Tina's second time appearing on the show).

If you missed it last night, you can listen online at this link or download audio files.

In other news...our 16-year old son Jamie went back to school today - hurray!! He had a pretty severe 5-day crash after our trip to Washington, DC, last week, but he says it was worth it. It's good to see him feeling more like himself again. I started to recover this weekend and am feeling good again, too - took a walk yesterday and got on the Lifecycle for a while today. Love those beta blockers and my heart rate monitor! I'm trying to work up my stamina so I can enjoy some short hikes on our vacation in June, but the last few very hectic weeks set me back a bit.

And I skipped Movie Monday yesterday - too much stuff going on! Ken and I did squeeze in a movie Sunday night - The King's Speech, which was just as wonderful as everyone had said. Colin Firth was, of course, excellent in it, but I thought Geoffrey Rush really stole the show. Great movie.

Radio Show on ME/CFS Tonight

2011-05-16T09:19:00.000-04:00

Just a quick note to let you know that ME/CFS is the subject of a radio show tonight at 6pm, Mountain Time (8 pm Eastern).

Fort Collins (CO) Public Radio station 88.9 has a show called Holy Hormones. The host previously interviewed Tina Tidmore of the ME/CFS Worldwide Patient Alliance on her show, and tonight she will be interviewing Tina, Kitty Lorentz (a young person with ME/CFS), and me! This show will focus specifically on kids, teens, and young people with ME/CFS, and we will also talk about last week's CFSAC meeting in Washington, DC.

You can listen to the show live at this link.

More CFSAC Testimony From Another Teen

2011-05-14T11:42:00.000-04:00

A 15-year old teen girl, a good friend of ours from our local group, reads a poem she wrote about living with ME/CFS:

CFSAC Testimony from A Teen with ME/CFS

2011-05-13T18:58:00.002-04:00

Another clip from the public comment period on Wednesday, May 11.
And very articulate and moving testimony from 15-year old Sophie:

CFSAC Meeting May 11

2011-05-13T16:32:00.004-04:00

Sorry for the delay in telling you abut the CFSAC meeting - Blogger has been down, in "read-only" mode for two days! Very frustrating.

So, yes, we did go to Washington, DC, on Wednesday along with about a dozen other families - lots of parents and teens there - as a part of the Speak Up About ME campaign. It was a very moving experience. Here's a picture of the teens that were there - all with ME/CFS. Many of our local group were there among them.

We were first to give our testimony at the start of the afternoon session, followed by many other parents and even a couple of brave teens who gave their own testimony. I cried through the whole hour! It was very moving, especially hearing the teens' own words. I highly recommend listening to the full hour - go to this NIH link, click on the video for May 11, and the public comment period starts at hour 4 and goes until hour 5 (you can also download it as an MP3).

If you're not up to listening to a full hour but would like to hear our 5-minute testimony, here it is:

Important note: my husband Ken was right there with me, sitting next to our youngest son, Craig, but they completely cut him out of the video! If you look carefully, you can spot his arm. I just wanted you to know he was there with us, one of only two dads.

After the public comment period, we all left to go visit our Congressional representatives to ask for more equitable distribution of research funds. We pointed out the huge disparity in the amount of research money devoted to ME/CFS compared to other, similar illnesses, especially given that ME/CFS affects far more people than the comparison illnesses. We also asked that they help to ensure that the CDC and NIH finally take action on the items they've promised for years, including establishing centers of excellence for research and patient care for ME/CFS. I don't know about everyone else's meetings, but ours went well, and the staffers we met with seemed truly interested and sympathetic. I think having the kids there really made an impact.

The best news of all? Our efforts are already beginning to pay off. At the end of the meeting, CFSAC discussed pediatric ME/CFS and talked about setting up a database to begin assessing how many kids and teens in the US have ME/CFS. They also agreed to set aside time in the next meeting to learn more about pediatric ME/CFS from expert speakers. Also, Dr. Leonard Jason says he's already working on a grant to study pediatric ME/CFS.

As a side benefit, I've gotten some great feedback from my family and friends. Every year for ME/CFS Awareness Day, I send out some sort of information to my family and friends, and usually I don't get much response. But this year, sharing the video of our testimony has resulted in an avalanche of support and questions! If nothing else, I've educated the people around me.

Craig was wiped out, but rebounded by 10 am yesterday, so he could go to school mid-day. Jamie and I are still crashed, but we feel it was worth it!

Watch CFSAC Meeting Live Today and Tomorrow

2011-05-10T09:54:00.000-04:00

Sorry for the silence - I've been far too busy to blog! We went to my mom's in Connecticut for the weekend and are leaving again tonight for Washington, DC, to participate in this week's CFS Advisory Committee meeting. This is the special awareness event I mentioned in an earlier post for focusing attention on kids and teens with ME/CFS.

At last count, they are expecting 35 participants from 14 different states. The kids and teens (and me!) will be wearing matching t-shirts, many people (including my family) will be giving testimony during the public comment period of the meeting, and we are also visiting our Congressional representatives to ask for more funding for ME/CFS research, with a special focus on pediatrics.

You can watch some or all of the meeting LIVE online. Just go to the NIH webcast website and click to watch. The event for kids and teens is tomorrow, May 11, and the public comment period tomorrow is between 1-2 pm Eastern time. So tune in to see my family and many others address the CFS Advisory Committee!

PANDORA and Denise Lopez-Majano have done a fabulous job of coordinating all of this. I am somewhat crashed from all the traveling we've been doing (in between CT and DC, Jamie and I drove to NJ yesterday to see our Lyme doctor), but we are all very excited to be able to participate. You can find me lying on the couch Thursday...

Raising Awareness of ME/CFS Through Music

2011-05-06T18:46:00.001-04:00

I thought Friday afternoon would be a good time to tell you about a wonderful acoustic duo who are helping to build awareness of ME/CFS through their music.

The group is called Cinder Bridge and is made up of Susan Wenger and Ron Amistadi. You can check our their blog - and their music - at their Cinder Bridge blog (several sample songs can be heard in the upper right corner of the blog).

So, what do they have to do with ME/CFS? Someone close to them has ME/CFS, and one of their songs, "Everybody Knows About Me", was inspired by him. The song is intended to emphasize how serious and debilitating ME/CFS is and to help dispel common misconceptions about it. Here's a really awesome YouTube video someone put together using their song.

Their blog even includes an FAQ page that talks about their efforts to build awareness of ME/CFS, plus a link to this great Fact Sheet they created about ME/CFS to educate their listeners. When they play "Everybody Knows About Me" at a public appearance, they explain what ME/CFS is and why they wrote the song.

As you can tell, I've been very impressed by their efforts...and I like their music, too! If you're a fan, too, you can purchase their first CD here (though it doesn't include "Everybody Knows About Me" - they're currently at work on that one). I hope you enjoy exploring their music as much as I have!

Finding Joy in Every Day

2011-05-04T15:56:00.000-04:00

I had intended to write about joy today, but I'm feeling kinda down (post-vacation blues, I suppose)...then I realized that writing about joy is just what I need to pull myself out of this funk!

I've written about joy on this blog before and have even devoted whole posts to particular joys in my life (the Outdoors, Friendship....hmmm...I thought I got to more than that...). Anyway, when we got home Sunday evening, I felt compelled to start my Joy Journal up again. I used to write in it daily, recording any small things that had given me joy that day. It's a really fabulous practice, a wonderful way to remind yourself of all of the good things in your life, even when it seems so limited. For instance, even though I'm feeling a bit down today, I could still write these things in my Joy Journal:

That first sip of Lemon Zinger tea in the afternoon (I do love my Zingers)
My youngest son kissing me good-bye when the bus came this morning. He does this every morning, then waves to me from the bus, but it still makes me smile every day.
The way a few minutes of yoga makes me feel, even when I feel achy and run-down.
Walking around Borders today. I was shopping for my mom and step-mom, but I just love being IN a bookstore, surrounding by all those wonderful reading possibilities!
Watching Parenthood, one of my favorite TV shows, during lunch (even though I cried three times during this episode, I love it!)

There, see? I thought I was having a bad day, but now I'm smiling. It really does work wonders for the soul.

And yesterday I saw someone on the Today Show, Neil Pasricha, who further inspired me to find joy in the little things. He's the author of a book called, The Book of Awesome (and now The Book of (Even More) Awesome which is why he was on the Today Show). His books follow the same concept, that there are million of little reasons to be happy every day, and you just need to notice them. Check out his website, 1000 Awesome Things, where every day he posts another little awesome thing to find joy in. I think I will make it my first stop each morning on the web!

What brings you joy?

Post-Vacation Crash

2011-05-03T11:43:00.000-04:00

Crashed today.

It's probably due to weaning myself off Ambien last night. I have to take Ambien when I'm away from home in order to stay asleep all night. At home, my regular meds for correcting sleep dysfunction work great, and I sleep soundly, but when I'm not in my own bed, it's just not enough. I take a tiny dose of Ambien - half of a 5 mg pill - but there is still a 1-day adjustment when I get home. I try to minimize the adjustment by taking one-quarter of a pill the first night back (it's tough to cut them that tiny!), but that first night with no Ambien is still always a restless one.

I had all kinds of bizarre dreams last night, too. I know it will be a bad day when I dream of being sick during the night! I dreamt that Ken had dragged me out to an Irish pub with a bunch of people he works with (though no one I recognized). Everyone else was partying it up, and I just kept feeling worse and worse. Not a good sign, right?

Anyway, I'm hoping this will just be a little 1-day blip. It's a Plan-B day. I gave up on going to the grocery store and e-mailed Ken a short list of groceries to pick up to get us through the next two days. Now I think it's time for some lunch and a nice, long nap - that should do the trick.

Back, Safe, Home Again

2011-05-02T18:39:00.000-04:00

(that's a quote from an old favorite picture book, Cars and Trucks and Things That Go by Richard Scarry)

Like the Pig family in our old favorite book, we are Back, Safe, Home Again. We had a nice trip out to Oklahoma to visit my father-in-law. It was a long drive in only 3 days on the way back, with non-stop rain the last day, but not too bad.

Today it was back to reality and back to work. I miss those long hours in the car with nothing to do but listen to audio books, look through magazines, take naps, and sing to favorite songs! We gave each of the kids a CD for Easter - The Script for Jamie and a Glee soundtrack for Craig - and we had a lot of fun listening to those, in addition to our old favorites. Back to e-mails and urgencies and long to-do lists today.

Although we were only camping 4 of the 10 days we were gone, it was wonderful to be back in our camper again. I love the togetherness of camping (see The Joy of Outdoors). With no TV, computers, or work waiting to be done, we just enjoy each others' company, sitting around a campfire, reading, and playing games. We stayed in one gorgeous state park in Tennessee, Cumberland Mountain SP, and enjoyed a nice walk along the lake and waterfall there. Our other nights were spent in more urban RV-park type campgrounds - not our usual thing but necessary this time to get all the way out there and back in only 10 days.

No movies last week (hence, no Movie Monday), but we did introduce my father-in-law to The Amazing Race and Glee. He really enjoyed Amazing Race and is going to start watching it on his own (which is great because he's all alone and really has nothing to do). At 85, he was a bit overwhelmed by the pace of Glee (and, I imagine, by some of its subject matter!), but he was a good sport and tried to follow all the plot lines.

In an odd twist of events, we arrived back home and had a message on our answering machine that Jamie won a cruise in a raffle he entered in a diner in Maryland! I called today and it does seem legit, but the cruise is a tough deal for us because he only won 1 free spot, and there are 4 of us, but the travel agent also offered us a free week at a 5-star resort instead! This would be a room for all four of us, so I think it might actually work out (of course, we still need to get to the resort). The boys are going totally crazy over this! Jamie sees this as proof that the lottery is a good investment (he gets really high grades in math but apparently needs more lessons in statistics!).

I almost forgot (which is a good sign) - I felt pretty good while we were away and continued my walks in Oklahoma. I guess the beta blockers and Immunovir are still working (more on Immunovir in another post). Jamie was just mediocre during the trip - he is still running very low on energy - though he managed to go back to school today and take his AP exam, so that's good.

So, getting back into the old routine and back to normal here. Hope you are all doing well and had a good Monday!

(P.S. If you're interested in what we're reading, check out my Monday post on my book blog).

Movie Monday 4/25

2011-04-25T22:35:00.000-04:00

I hope everyone had a nice Easter (or Passover). We spent ours on the road and arrived at my father-in-law's house in time for a nice little Easter dinner with him.

We had a good trip here and really enjoyed camping along the way. We miss our little pop-up camper during the winter months! And we had a wonderful dinner Saturday night with some good friends in Arkansas - friends that we met through this blog! Their 17-year old daughter has CFS and is actually doing very well these days. It was great to see them, and I discovered a new treat: fried pickles (really!) - yum.

Not much time for movies last week since we were busy preparing for our journey. The kids were home sick (Craig for two days and Jamie all week), so they watched some movies during the day, but I was so busy I don't even remember what they watched. So, just one movie to report on:

Last night, we watched The Tourist with my father-in-law. I'd heard mixed reviews of this recent thriller starring Angelina Jolie and Johnny Depp, but we all enjoyed it. The scenery in Venice was stunning, there was plenty of humor in it, and though it seemed predictable at first, it had a few tricks up its sleeve that surprised us. All in all, a fun movie.

Have you seen any good movies lately?

(If you're interested in what we're reading this week, check out the Monday post on my book blog.)

New Population Study on Kids/Teens with ME/CFS

2011-04-20T13:12:00.000-04:00

A recent Dutch study attempted to quantify how many kids/teens have ME/CFS, information that is badly needed. However, I don't think they quite got it right, based on the headlines I've been reading, like this one from Reuters: "Chronic fatigue rare but serious in teens".

The problem, which is explained in the linked article, comes from the methods employed. The study authors based the numbers on responses to surveys from pediatricians and general practitioners. Less than half returned the surveys, and only half of the GPs participating in the study said they even recognize CFS as a distinct diagnosis! So, the numbers are obviously much lower in this study than they are in reality. How can you rely on a doctor's count of cases of ME/CFS if he/she doesn't even recognize it?

I can tell you from the number of kids and teens with ME/CFS I know personally just in my local area and the number of parents I hear from through this blog, that ME/CFS is NOT rare in teens. If the CDC's estimate that almost 80% of people with ME/CFS are undiagnosed, then the number of teens affected must be much higher than this study cited. At least, the study authors emphasized the severity of ME/CFS.

It's an interesting article, though, and perhaps it will spark some necessary and far-overdue debates about the incidence of ME/CFS in kids and teens.

As for my own teens, they've both been home sick most of the week so far. Craig went back into school today, even though he wasn't feeling well. He's got some fairly severe congestion, too, so I'm taking him to the doctor this afternoon - don't want to get stuck on the road on a holiday weekend with a sinus infection! Jamie is still badly crashed with severe symptoms. My husband and I said to each other last night that if this crash is still just from attending his prom Friday night, that's pretty depressing. We're hoping they both feel well enough for our spring break trip.

My testimony for CFSAC

2011-04-19T08:45:00.000-04:00

Yesterday was the deadline for submitting testimony for the upcoming May 11 CFS Advisory Committee (CFSAC) meeting hosted by the National Institutes of Health (NIH). You may recall that we are planning a big awareness event, Speak Up for ME!, for kids, teens, and young adults with ME/CFS at the meeting, so I focused my own testimony on my kids. This is a bit too long for my family's 5-minute speaking slot, so I'll have to edit it down before presenting it at the meeting, but I wanted to submit the complete testimony in writing. Here it is:

"My name is Sue Jackson, and I have had ME/CFS since March 2002. Both of my sons, ages 13 and 16 have it also – they’ve both been sick for seven years. I have always wanted to come to a CFSAC meeting, but I need to nap every day. I know that attending today will cause a relapse, but it’s just too important to miss.

Although my own life has been dramatically changed because of ME/CFS and I am severely limited in what I can do, I want to primarily focus on my sons today because pediatric ME/CFS is rarely talked about – and even more rarely researched – and it is a much larger problem than most people understand. In addition to my two sons, I personally know seven other kids with ME/CFS just in my local area, plus several more who probably have ME/CFS but aren’t diagnosed, and I’m sure there are many more. I write a blog about living with ME/CFS, and I receive e-mails every week from parents whose kids are completely disabled by this devastating illness.

Our older son, Jamie, started showing symptoms of ME/CFS when he was eight years old and in 3^rd grade. The symptoms came and went for a couple of years, then become suddenly much worse when he was ten. Jamie missed 60 days of 5^th grade that year and was bed-ridden about 50% of the time. When he started middle school the next year, we didn’t even bother counting the days’ absent. After some intense battles with teachers and administrators (which left me much sicker), the school finally agreed to waive all attendance requirements and all non-essential courses. Jamie took two classes with a homebound instructor and took the other three required classes in school. He made it to those three classes about 60% of the time, with me driving him back and forth to school several times a day so he could rest in between classes (on the days he was able to go at all).

Our younger son, Craig, began showing ME/CFS symptoms when he was just six years old, in 1^st grade. We recognized the sore throat, flu-like aches, and exhaustion after mild exercise, but his frequent chest pains and back pain scared us. After many doctor’s visits, tests, and conferring with some experts, we were fairly certain he also had ME/CFS, though milder than his brother’s. We didn’t want him to think of himself as a sick kid at such a young age, but when he missed 35 days of school in 3^rd grade and the principal began calling, we knew it was time to have him officially diagnosed.

We were very, very fortunate to be able to see Dr. David Bell and to confer with Dr. Peter Rowe. They are both excellent doctors with amazing dedication to their patients. They explained Orthostatic Intolerance (OI) to us and worked with our sons’ local pediatrician to treat it. Kids often respond well to OI treatment, and we were fortunate that it worked quite effectively for our kids. Both boys were able to return to school full-time.

Although we are grateful for this treatment that allows them to live more normal lives, ME/CFS is still a significant part of daily life for them. They go to bed at 8 pm every night, even our 16-year old. They have to be careful not to overdo and will experience a severe flare-up of ME/CFS symptoms if they do too much. A sleepover at a friend’s house can result in several days of being too sick to get up off the couch. Jamie still misses between 25 and 35 days of school each year due to ME/CFS flare-ups (a bit less for Craig). They both take a lot of medication every day, and we know if they stopped the medications, they’d go right back to being bedridden much of the time. As my 16-year old son said to me recently, “This illness has ruined my life. I am so far from being a normal teenager.”

My husband and I worry about their futures. Our older son will be college-age in a year, but will he be able to leave home? Even if he does make it through college, will he ever be able to handle a full-time job? What if the medications don’t work as well for him as he gets older? What if he gets worse? Neither of our sons has been exposed to the Epstein-Barr virus yet, a known trigger for ME/CFS. What will happen if one of them gets mono or is exposed to another triggering infection? These unknowns are frightening, but we know that we are the lucky ones, that there are thousands of kids across the US who are completely bedridden with ME/CFS and unable to attend school at all.

Living with ME/CFS is a constant struggle. We can’t escape it even for a day because we can’t escape our bodies and our limitations. It is always there and we worry that it will always BE there, and there’s nothing we can do about it. When our children feel bad or can’t do something, we feel helpless, and there is no worse feeling for a parent than helplessness.

These kids are missing out on so much – parts of their lives they will never get back. When I was a teen, my life felt so carefree – no worries, few responsibilities. Jamie in particular constantly feels the weight of his illness and is always trying to catch up from missed days of school. Our kids deserve more. They deserve solid, scientific research and real treatment options that address the biological cause(s) of the illness rather than just masking symptoms.

After living a perfectly healthy life for 37 years, I got ME/CFS in 2002, and each of my sons became ill within a couple years of that. We are living proof that this illness has both genetic and infectious roots that need to be further investigated. Families like ours, with more than one person with ME/CFS, are not uncommon, as the 2006 New Jersey CFS Association study showed.

Although research funding for ME/CFS in general is severely lacking, funding for research into pediatric ME/CFS is practically non-existent. There hasn’t even been a complete population study done on the incidence of ME/CFS in children and teens.

Most, if not all, of the significant advances in ME/CFS research so far have come from private funding, but we need the involvement of the CDC and NIH in order to help the millions of Americans, including kids and teens, who are disabled by ME/CFS and can’t find a knowledgeable doctor or an effective treatment."

P.S. There are still ways that you can help to support this awareness project, even if you can't go to the meeting. Check out the Speak Up for ME! website for more information.

Movie Monday 4/18

2011-04-18T16:50:00.000-04:00

Kind of a rough Monday here. Both boys are home, crashed, today. Jamie went to his prom Friday night and stayed out until 2 am! Craig slept over at a friend's house Saturday night, then came home yesterday and slept all day. Today's crash is probably the result of those two late nights, though Craig has some congestion, too, so there might also be a virus afoot. Always hard to tell - he sometimes gets congestion as one of his crash symptoms. Nothing to do but wait and see.

I have an insanely busy week ahead, trying to get ready for our spring break trip to visit my father-in-law in Oklahoma. I received a fat package of additional forms from Social Security this weekend that have to be filled out and returned before we leave, too. Of course, the information asked for is all stuff I already explained in my initial application; some of the forms are identical to those I already filled out! Plus all of my doctors have been calling today for details on when I left work, etc. I guess they all got their forms in the mail, too.

We did enjoy some movies this weekend:

Friday night, while waiting for Jamie, Ken and I watched Love Happens, starring Jennifer Aniston and Aaron Eckhart, about a successful author and speaker on grief (Eckhart) who hasn't yet dealt with the loss of his own wife. It seems to be a light romance at first, but it has more depth than most, dealing not only with love but also with loss. We both liked it. Then I went to bed, and Ken waited up to pick up Jamie!
With Craig off at his sleepover Saturday, Ken, Jamie, and I watched Hancock, starring Will Smith as a hard-drinking, potty-mouthed, messed-up superhero. He saves the life of a PR professional (Jason Bateman) who offers to help him clean up his image. It was good, with some surprising twists in the plot.
After Jamie went to bed, Ken and I watched Country Strong, starring Gweneth Paltrow as an alcoholic country music star slightly past her prime and Tim McGraw as a rising star who tries to help her. It reminded me somewhat of Crazy Heart which we watched a few months ago, though it had its own unique plot elements. Although I'm not really a country music fan, I enjoyed the music in the movie.

Have you seen any good movies lately?

Fascinating WSJ Article on Retroviruses

2011-04-14T19:59:00.000-04:00

Our best friend at the Wall Street Journal, Amy Dockser Marcus (who has written some excellent articles on CFS) has written another article, a look at the latest research on how ancient viruses can contribute to modern disease. Her article, How Old Viruses May Haunt Us, is not solely about CFS. In fact, CFS is only mentioned in the last paragraph, but the information she provides is absolutely fascinating and very relevant to the puzzles surrounding CFS.

NIH State of the Knowledge Videocast Posted

2011-04-14T09:32:00.000-04:00

For all of you who were waiting to watch some (or all) of last week's NIH ME/CFS State of the Knowledge Workshop, the videocast has been posted (just scroll down a bit to April 7-8). If you want to zero in on certain presentations, you can refer to the meeting agenda to help find the sections you want.

Chronic Fatigue Syndrome on the SAT!

2011-04-13T17:46:00.000-04:00

Jamie took the SAT (college board test) today for the first time. You won't believe what he saw in the Vocabulary section...a sentence about CFS!!

He said it was something to the effect of, "People with Chronic Fatigue Syndrome were angry when the doctor said it was psychosomatic, that it was all in their heads, rather than a physical ailment." (not the exact words but something similar).

Isn't that amazing? We've hit the big time! He said he felt like shouting out loud! Several of his friends mentioned it to him after the test, too.

Does this mean our illness is finally, officially mainstream?

Time to Vote on a New Public Service Announcement!

2011-04-12T15:57:00.001-04:00

You may recall I posted recently about a contest, sponsored by the ME/CFS Worldwide Patient Alliance, for a new ME/CFS Public Service Announcement (PSA) that will be sent to TV stations.

It's time to vote for your favorite PSA and let your voice be heard! Here are the details:

You get to have your say with MCWPA. We are now calling for ME/CFS patients and their families to vote on the final versions of the PSA contest entries. After receiving patient feedback, the designers made changes. Use the links below to watch the PSAs on YouTube (each one is only 30 seconds long):

View PSA #1 Hallmark.

View PSA #2 Serious.

View PSA #3 Prevalent.

View PSA #4 Whirlwind.

Be sure and view the above videos before going to the survey to cast your vote.

The winning PSA designer will received $400 from the MCWPA donations. An anonymous donor has also offered to give $100 to the winner's favorite charity. The second place winner will receive $200 and the third place winner will receive $100.

Voting ends on April 18 at midnight EST.

I just watched the videos and cast my own vote - it only takes a few minutes!

Movie Monday 4/11

2011-04-11T15:25:00.001-04:00

Hope everyone had a good weekend! I spent most of the weekend planning vacations - our road trip to see Ken's dad in Oklahoma for spring break and our big trip to California this summer. I've really been feeling in a rut lately, so I can't wait for spring break! We all need to get away for a little while. Of course, that will put me even further behind in everything, but it will be worth it!

We enjoyed some good movies on Friday evening:

Craig was at a dance, so Jamie, Ken, and I watched Deja Vu, an action-packed sci fi suspense movie starring Denzel Washington. We loved it right from the start because it is set in our beloved New Orleans! Washington stars as an ATF agent investigating a terrorist attack. The FBI comes in to help, along with some top-secret new technology, and that's where the fun begins! It was fast-paced with a clever and intriguing plot, and we all enjoyed it very much.
Ken and I watched (over the course of a couple of nights) It's Complicated starring Meryl Streep and Alex Baldwin as a 50-ish divorced couple who have an affair with each other, with Steve Martin as an architect who is interested in Streep's character. It was all very light and funny and lots of fun.

Have you seen any good movies lately?

It's 80 degrees here this afternoon! Hope you are all enjoying this lovely Monday.

(If you're interested in what books we are reading this week, check out my Monday post on my book blog.)

Quote It Saturday 3/12 - State of the Knowledge

2011-04-09T10:02:00.001-04:00

I realized that in my haste to post my notes from the 2-day NIH ME/CFS State of the Knowledge Workshop yesterday, I didn't really sum up the conference or express my perspective on it....which is probably good for the notes to be objective, but I thought you might be interested in an quick overview, too. Since I heard the perfect quote to accompany this overview, I thought I'd include that, too.

This is actually an approximate quote, since I listened to the book on audio, but I got the critical parts right:

As my friend Christopher Reeve said, Optimism plus Information equals Hope.

- Michael J. Fox, Always Looking Up: Adventures of an Incurable Optimist

(I loved this inspiring memoir - you can read my full review at my book blog).

Overall, I saw a lot of reason for hope at this week's workshop. True, there are some huge challenges ahead, but we've come a long, long way from where we were just a couple of years ago.

Just the fact that this workshop took place is amazing and exciting. To have most of the top ME/CFS researchers (and some clinicians and patients, too) in the same room for two days, exchanging information on all the different aspects of ME/CFS is a stunning accomplishment. In the equation above, the Information side is growing by leaps and bounds. I told my husband that the workshop overall was a bit like the old blind men and the elephant tale - each scientist is focused on his or her own small, super-specific area of expertise. But for two days, they all sat there together and listened to each other and exchanged ideas. It's a good portend for the future.

Progress is being made in many different aspects of ME/CFS - the brain, the immune system, genetics, the autonomic nervous system, and more. True, each person is focused in one area, but there seems to be true interest in working together and in seeing the picture of ME/CFS as a whole. I think the participants in the workshop learned a lot from each other, and I believe, from the comments made during the summary session, that there will be more integration and cooperation among them going forward.

Every single person there seemed to understand the severity of ME/CFS and have an idea of its devastating impact on patients. Not one single presenter talked about psychological causes or confused CFS with depression - that alone is a big step forward!

Granted, scientific progress often moves at a glacial pace - every single hypothesis has to be tested multiple times in multiple ways, but important advances are being made in every area of study. I think there is a lot of reason for hope.

WSJ Blog Covers XMRV Debate at NIH Workshop

2011-04-08T22:05:00.000-04:00

In my summary of the 2-day NIH ME/CFS State of the Knowledge Workshop (see post below), I gave a very brief summary of the XMRV debate between WPI and the National Cancer Institute. The Wall Street Journal Health Blog did a much better job providing the details of the debate that took place yesterday and today. Check it out if you're interested in more information.

My Notes from NIH ME/CFS State of Knowledge Workshop

2011-04-08T18:09:00.001-04:00

NOTE: The purpose of this 2-day workshop was for scientists to present their latest research findings to other scientists. As such, the presentations were aimed at fellow medical scientists, and the details were often over my head. I do not have a medical background (and my last biology class was several decades ago!).

Here, I am summarizing only a few of the key conclusions from certain presentations – this is by no means a comprehensive summary. I didn’t watch all the presentations (had to take my naps and take care of my family) and some I left out simply because they were highly scientific and/or theoretical with little of practical use to patients today. Also, I didn't start taking notes until Day 2 (I was just too sick), though I've included some key points from Day 1 here). You can watch any or all of the presentations online, referring to the meeting agenda to help find the ones you want (they haven't yet posted the videos online, but you should be able to find links by next week at the NIH Videocasting website, unless the government shuts down).

DAY 1

INTRODUCTION:

Dr. Anthony Komaroff, Harvard, presented an overview of ME/CFS and its symptoms.

Dr. Leonard Jason, DePaul University, presented an overview of the various definitions of ME/CFS, including their flaws.

INFECTIONS – Each of the four following presenters talked about the role of various infectious agents in ME/CFS:

Dr. Glaser, Ohio State – EBV and CFS

Dr. Chia, EVMED – Role of Enteroviruses in CFS

XMRV (both of these presentations are HIGHLY simplified here – just the overall conclusions):

Dr. Mikovitz, WPI – XMRV in ME/CFS

Dr. Mikovitz presented the latest findings on XMRV from WPI and focused primarily on all the reasons why contamination is NOT an issue and how they have proven this and reconfirmed their positive XMRV results in multiple ways.
In a summary at the end of the Workshop, Dr. Mikovotz pointed out that HIV does not cause AIDS – the official definition of AIDS says it is caused by the combination of HIV plus one of many other co-infections and that it could possibly be the same case with XMRV and ME/CFS (where the co-infections are EBV, HHV-6, Lyme, enteroviruses, etc.).

Dr. Coffin, National Cancer Institute – Origins of XMRV and MLV

Dr. Coffin presented his data on how XMRV and MLV originated from mice and contaminated the prostrate cancer cell lines and therefore concludes the XMRV positive studies are due to contamination.

(See the problem here? There was some heated debate but no resolution yet of this issue. Bottom line: The scientific community as a whole has not yet come to a conclusion as to whether XMRV is a critical element of ME/CFS. Some factions say yes, absolutely, no question; other factions say no way, not possible. Studies are already planned and started to test these theories with blind, coded samples – These are detailed, thorough studies with answers expected perhaps a year or more from now. Stay tuned.)

Dr. Light, University of Utah – Gene Expression Post-exercise in CFS vs. Other Illnesses

There were clear differences post-exercise in the ME/CFS patients to differentiate them from patients with MS, fibromyalgia, and healthy controls (all participants were sedentary and deconditioned).

Dr. Christopher Snell – Exercise Intolerance

Dr. Snell and his group at University of Pacific/Pacific Fatigue Lab have been doing the BEST research on exercise intolerance in CFS for over a decade now (my opinion, but widely held!)
He described how they use cardiopulmonary exercise testing to characterize and define many of the effects of exercise on people with ME/CFS and clearly prove CFS is different from deconditioning.
Their tests look at not just during exercise but also 24 hours and 48 hours AFTER exercise (HURRAY!).
You can’t tell CFS patients from sedentary controls at baseline, but there are clear and distinct changes in CFS patients in the days following exercise. We all know this already, of course, but this is clear, scientific evidence to show how disabling and critical PEM is for us.

Dr. Rowe – Orthostatic Intolerance and CFS

General overview of OI in CFS (surprisingly, it seemed that some of the researchers focused in single areas weren’t even aware that OI is part of CFS).
Studies show 95% of people with ME/CFS have OI (either POTS or NMH or both)
Emphasized that OI underlies most symptoms of ME/CFS and is a critical component.
Another speaker mentioned that studies show that LOW doses of propranolol (the beta blocker I take) was more effective at controlling POTS than high doses – I’ve heard the same conclusion from individual patients.
For more information, watch this presentation online and/or check out Dr. Rowe’s CAA Webinar on OI (you can watch it on Youtube, read the slides, or read his full article):

DAY 2

Dr. Klimas – Biomarkers

There are many immune system biomarkers identified that could be used for diagnostic purposes and to target treatment areas, especially those related to NK cell function and cytokines.
Advances in testing in the last few years make these biomarkers more reliable.
Dr. Klimas already uses many of these tests in her practice to diagnose, to categorize patients, and to target treatments.

Dr. Cook (U of Wisconsin) - Neuroimaging Biomarkers

Data from neuroimaging has been used to document brain changes in CFS during mental activities: these show that people with CFS must work harder and use more of their brain to do the same tasks as healthy controls.
This area is probably not ready yet to be used as a biomarker, but the research is promising and should be continued.
Dr. Rowe asked if they can do brain imaging on patients while standing – not yet!

Dr. Dean, National Cancer Institute – Identifying Genes and Genetic Risk in Diseases

Genomes have been identified for many complex diseases.
One challenge: in order to identify genes, there need to be clear ways of defining and classifying the illness (i.e. biomarkers) – a problem with ME/CFS.
Although this technology is not quite ready and cheap enough to apply to CFS as a whole right now (maybe 5-10 years from now), it can be used for individuals and for families (in my opinion, this is a critical area that hasn’t been investigated enough yet – incidence of ME/CFS in families).

TREATMENT:

Dr. Fred Friedberg, SUNY Stony Brook – Self-Management of ME/CFS and the Meaning of Improvement

Not much new here - Self-management techniques (pacing, finding positive activities to improve satisfaction that don’t push past physical limits) can help patients and deserve more attention.
He also referred to the PACE trials – showed data that CBT can indeed help some CFS patients but the problem is that the UK presents it as a first-line (and often ONLY) “treatment.” Also explained that GET can be harmful if patients are pushing past their limits (big news, right?)

Dr. Biaggioni, Vanderbilt – POTS and CFS

Another excellent presentation on OI, focused on POTS.
Beta blockers are the best treatment for patients with POTS and CFS.
Reinforced yesterday’s point that very low doses of beta blockers work best, in order to prevent the side effect of fatigue, even as low as 20 mg of propranolol (which is what I take). They prefer a short-acting beta blocker (propranolol) because it’s impossible to titrate the longer-acting ones to a low enough dose.
Important to avoid deconditioning - the more time we spend lying down, the worse our POTS gets – but this is a challenge since just standing up can drive our HR way above the anaerobic threshold. Can try recumbent bike or any exercise in water (because the water pressure helps to control BP and HR). Beta blockers can allow POTS patients to exercise by lowering HR (as has been my experience).

Dr. Lucinda Bateman, Fatigue Consultation Clinic (Utah) – Treatment Overview

She presented an excellent overview of how she treats patients:

1. Diagnose accurately.

2. Teach the concept of pacing.

3. Address symptoms that alter function and illness severity (including despair, disordered sleep, pain, deconditioning - very carefully, adapting to illness severity, fatigue). All of these symptoms can be effectively treated.

4. Treat Orthostatic Intolerance and Low Blood Volume (using hydration, increased sodium, meds like Florinef, midodrine, and beta blockers).

5. Treat Infections/immune dysfunction (with anti-virals, gamma globulin, Immunovir, Ampligen).

6. Treat HPA Axis Dysregulation (HRT, thyroid, other hormones that might be lacking).

7. Other treatments: Magnesium for pain, Vitamin B12 helps some patients.

IACFS is working on Treatment Guidelines – doctors can download Dr. Bateman’s intake forms at IACFS website.

SUMMARY SESSION:

Stratification – categorizing patients – is critically important since the illness is so heterogenous but these subtypes must be standardized.
Integration: important to look at the whole illness, from a molecular level to a clinical level and share findings.
Case definitions must be standardized, and standard operating procedures/methods should be standardized among researchers.
Reproducible biomarkers are a must for future research to move forward.

Director of NIH stopped by to address the group! He’d intended to spend more time in the workshop but was pulled into emergency meetings because of the likely government shut-down. He expressed strong NIH support for furthering ME/CFS research, though he warned we are probably looking at times of record-low funding coming up.

NIH State of the Knowledge Broadcast - LIVE

2011-04-07T08:46:00.000-04:00

Just a quick reminder - the NIH ME/CFS State of the Knowledge Workshop is being broadcast live NOW (all day today and tomorrow).

Just go to this website and click on the ME/CFS Workshop. I had to download a RealPlayer (I use a Mac) in order to watch it - a quick and easy process started by clicking on Player Software on the same page. The more people who log in to watch, the better - the NIH tracks the numbers!

Feeling pretty badly crashed today, so lying in bed watching the conference is just my speed for today. Gotta get back to it...

ME/CFS Family Study

2011-04-06T16:17:00.000-04:00

Dr. Jamie Deckoff-Jones is starting an informal study of ME/CFS and related illnesses in families. She works for WPI and writes a blog about her and her daughter's experiences with CFS. They are both XMRV positive and have been trying anti-retrovirals. Her blog is very interesting and always enlightening, but be forewarned: there is often a lot of mud-slinging among the commenters.

Whether you have family members who are ill or not, please take a moment to visit her blog and answer the survey questions (via e-mail and confidential). Obviously, possible transmission of CFS among family members is a subject of great importance to my family. This is long overdue, and anything that helps to shed some light on the mechanisms of ME/CFS is a good thing.

NIH State of the Knowledge Workshop

2011-04-05T09:11:00.000-04:00

The U.S. National Institutes of Health (NIH) has posted the agenda for its two-day State of the Knowledge Workshop on ME/CFS Research taking place on Thursday and Friday this week (April 7-8). It's two days chock-full of presentations by the top ME/CFS researchers - should be a great overview of the latest findings.

The entire two-day conference will be broadcast live via the web - click on the link at this page to access the webcast on the days of the conference. I will certainly tune in for some of it - should be enlightening!

Movie Monday 4/4

2011-04-04T16:18:00.002-04:00

Happy Monday! Hope you all had a good weekend. We spent most of it watching soccer games and working on our tax returns. Thank goodness we finally finished - whew, what a big job! Sorting out the medical expenses - including what was paid by insurance, what was reimbursed from our flexible sending account, and what was truly out-of-pocket - was a huge task in itself! Now, I have to get back to my neglected to-do list. I just spent hours going through all the e-mails that piled up this weekend. I'm rarely online during the weekends, so Monday is always a catch-up day.

Well, the other thing we did this weekend was to watch two movies:

We watched Date Night with the kids, and I was pleasantly surprised! I expected this comedy starring Tiny Fey and Steve Carell to be just 90 minutes of silliness and slapstick (you know, plenty of jokes about people getting hit in the crotch), but it was actually a pretty good movie. It was very funny (and not a single crotch hit!) but also had an element of mystery/suspense to it. Also, Ken and I could relate to the main characters - a suburban NJ couple, overwhelmed and tired, who attempt a special night out together in NYC. Overall, very enjoyable.
Ken and I watched Extraordinary Measures, another movie that struck a bit too close to home. It's based on a true story, about a family who have two kids with a fatal, degenerative illness, Pompe disease (of course, we are grateful our kids have long lives in front of them, but we could relate to other aspects of the family's life). The two kids are both getting close to the expected lifespan for Pompe kids, and the parents are increasingly desperate to find a way to save them. The dad, who works for a pharmaceutical company, discovers some promising - but not prominent - research being done on a new treatment and searches out the researcher, a brilliant scientist but grumpy loner in Nebraska played by Harrison Ford. The parents end up facing a decision - should they put all their hopes (and time and money) on a possible miracle or should they devote all of their energy to just enjoying their kids' last days? Yes, it's a tear-jerker, but it's also very inspiring and uplifting. When it ended, Ken and I looked at each other and said, "Should we be doing more? Fund-raising? Something to help move the science along?" It really was inspirational.

Have you seen any good movies lately?

Friday Fun!

2011-04-01T16:35:00.000-04:00

Hee hee...check out this YouTube video of a hilarious new product. It's meant for lazy video game players, but wouldn't this be useful for those days that you have to spend on the couch? I've learned to do everything else lying down, why not eat?

TGIF! It's been a long, busy week here, but at least I felt good for most of it. I was moderately crashed on Wednesday, but that's it. Good thing because this week was packed full - orthodontist, dentist, haircut, grocery shopping, middle-school band festival, plus the first week of soccer season. Whew! The good thing about soccer season is that I get a little downtime while Ken coaches the kids' team practices. The downside is that we have to get up early tomorrow morning to watch two games in a row in the cold and wet! Brrrr...it actually snowed here this morning. What happened to spring?

Hope you enjoyed the laugh on a Friday. Have a great weekend!

Feedback Requested on ME/CFS Public Service Announcements

2011-03-30T11:55:00.000-04:00

As you may know, the ME/CFS Worldwide Patient Alliance has been sponsoring a contest for patients to create videos that can be used as a Public Service Announcement (PSA) for ME/CFS. The winning video will be sent to TV stations all across the nation.

Six excellent videos have been created and entered in the contest, but now MCWPA needs your help!

Use this link to the MCWPA Discussion Forum, where you will find a Discussion Topic created for each of the PSA contest entries. Click on the link to watch the YouTube videos, then leave your thoughts and opinions on each one in the discussion forum. Entrants will then have a chance to revise their videos, based on your feedback, before final voting on the winner. Sounds like fun, right? Go on over there now and let your voice be heard! This is your chance to add your own thoughts to a national ME/CFS awareness campaign.

Great Articles on ME/CFS

2011-03-29T16:20:00.001-04:00

Last week, there were several really excellent articles on ME/CFS in the mainstream media. I've had these 3 articles sitting open in browser windows on my laptop for almost a week now! I figured it's time to finally pass these along:

Unlocking Chronic Fatigue Syndrome by Amy Docker Marcus (our best friend in the media), published in the Wall Street Journal on May 22. This article gives an overview of ME/CFS research like you've never read in the newspaper before: heavily focused on real science, possible infectious agents, and new studies.
Wall Street Journal's Health Blog, also on May 22: The Hunt for the Biological Causes of Chronic Fatigue Syndrome by Katherine Hobson. This brief blog post is mostly focused on the National Institutes of Health (NIH) upcoming conference on ME/CFS April 7 - 8, including 100 scientists, but it also references Amy Docker Marcus' article, above.
Scientists Seeking Biological Causes of Chronic Fatigue Syndrome, published on May 22 on the Fox News website. Although this is essentially a reprint of Marcus' WSJ article (above), I thought it was significant that Fox News covered it as well.

So, that was last week's news! Now I can focus on THIS week...

Movie Monday 3/28

2011-03-28T15:59:00.000-04:00

Monday already! We spent the weekend working on our tax return (still haven't finished yet!), so it didn't feel like much of a weekend, but I am starting the week feeling quite good and refreshed by my blog break. My crash of last week seems to be cleared up - I was able to get back to walking again today!

Thank you so much to all of you who commented here last week and expressed your caring and support while I was going through a rough time. I can't tell you how much that meant to me, and how much it boosted me up. There is nothing in the world that beats the feeling of knowing that there are other people out there who totally understand. Thank you.

Our weekend had some real highs and lows. On Saturday, Jamie felt well enough to work on a Habitat for Humanity house with a group from his school, something he has wanted to do for ages. He came home on top of the world! Sunday, however, was awful for him. I'm sure he was a bit crashed from Saturday, but he also had severe stomach pains and chills and was once again stressed over not being able to finish his schoolwork. Fortunately, today was better for him as well, and by tomorrow, he should finally be done with all that make-up work and able to start a new marking period with a fresh start.

Craig went to a marathon sleep-over party, from 5 pm Friday, culminating in a dance Saturday evening. Some kids were staying over another night, but we told him one was his limit and picked him up after the dance. He slept for 13 hours straight!! He did bounce back on Sunday, though, so we were grateful for that.

The bright spot in the weekend for us was watching a couple of great movie DVDs in the evenings! With Craig away most of the weekend, Ken, Jamie, and I watched:

Inception, starring Leonardo DiCaprio and Ellen Page, was just as complex as everyone has told us! DiCaprio stars as a man who can enter people's dreams and works in corporate espionage, stealing secrets. He and his colleagues get the ultimate challenge, though, when they are hired to plant an idea instead of stealing one. At one point, they are all embroiled in a dream within a dream within a dream within a dream. Follow that? We all enjoyed it very much, but this is definitely not a movie to watch when brain fog is bad!
Saturday evening, Jamie chose 2012 which was surprisingly good and better than I expected. It's something of a classic disaster film, with the Mayan predictions about the end of the world in 2012 proving to be true, but with good acting, good writing, and even some emotional depth. Starring John Cusack (one of my favorites), Amanda Peet, Danny Glover, and Thandie Newton (among others), this was the first action film that actually made me cry. I don't think it's giving anything away to tell you that it does end on a note of hope, which was a relief after watching The Road a few weeks ago!

Have you seen any good movies lately?

Time to go make dinner - we have stuff going on almost every evening this week - but I do hope to find a few minutes here and there to get back to visiting blogs this week.