Groundbreaking New Research Model for ME/CFS

I've been really exhausted all week but also really busy, so today I am feeling pretty badly crashed...and both of my kids are home sick, too.  So, I don't have the time or energy for much blog writing today, but I wanted to share this great new announcement from the CFIDS Association of America (CAA).

They are starting a brand-new research initiative called "research institute without walls."  Basically, they are coordinating (and funding) ME/CFS research from top scientists and doctors, located at top research facilities, and making use of the CAA's Solve CFS BioBank.  The program is focused on finding effective treatment options for those with ME/CFS, a refreshingly practical and unusual approach in this field!  Each of the projects will delve into its own aspect of CFS (cognitive dysfunction, OI, exercise intolerance, etc.), but the researchers will also work together, coordinated by CAA's Scientific Director, Suzanne Vernon, and share information.  You can read all about the new approach and the individual studies approved so far at Reserach1st.

I think this is wonderful news for all of us patients!  The Wall Street Journal even covered this breakthrough on their Health Blog this morning.  Apparently, in addition to the usual sources of research funding (we contributed to this project!), Laura Hillendbrand is donating $250,000, bringing the total funding to $2 million.  How about that for some good news for a change?

P.S. Want to help?  Read about the Catalyst Fund which is helping to fund this research and contribute, if you are able to.  You can also help move this research along by participating in the SolveCFS BioBank.  I have applications for Jamie and I sitting here...I really need to find the time to get to these...

Happy Mardi Gras - Celebrate!

Happy Mardi Gras, everyone!  We used to live in New Orleans, so today is a favorite holiday of ours, though we like any excuse to celebrate!

I think that in any life - but especially when you are living with chronic illness - finding little reasons to celebrate can bring joy to otherwise monotonous days.  Sick or not, I was brought up with this attitude - that even small occasions are reasons to celebrate (thanks, Mom!), but it's become even more important since my sons and I got ME/CFS.  When you're spending every day lying on the couch, trapped in your house and too sick to do anything (as Jamie has been lately), a little celebration means a lot.

So, in that spirit, here are some ways you can join us in celebrating Mardi Gras today:

• Have some yummy New Orleans-style food for dinner tonight!  If you live in the U.S., a simple way to do this is to get some take-out from Popeye's (a fried chicken franchise that started in New Orleans) - that's what we'll be doing tonight, along with several friends who used to live in NOLA when we did.  Believe it or not, their red beans and rice is pretty authentic, and you can't beat their spicy fried chicken!
• If you or someone else in your household is up to a little cooking, you can try one of my New Orleans-inspired recipes.  They were just published in the February 2012 issue of Family Fun magazine - you can probably still find a copy wherever magazines are sold (the March issue will replace it any day now).  They didn't post the full article online, but the individual recipes are there.  Try: Red Beans & Rice (a very quick and easy but tasty version), Jambalaya (a favorite here but it takes a bit more work and makes a large amount), or Shrimp Etouffee.
• Enjoy a King Cake!  This traditional cake is eaten every day during Mardi Gras season (from January 6 until today, the day before Ash Wednesday) in Louisiana.  No matter where you live, there are probably some local bakeries who make King Cakes this time of year.  We've found several here in Delaware. If you have the energy for baking, you could try making your own.  Here's a King Cake recipe from Family Fun (this one isn't mine because we always buy ours, but I still wrote the intro).
• Dress in purple, green, and gold and throw on some plastic beads if you have them (we have a big carton of them from our time in New Orleans!).
• Check out the festivities from the comfort of your bed or couch at NOLA.com, which is featuring plenty of Mardi Gras photos and videos today.  You can even check out their live webcam and, if you're lucky, catch a parade (there's one on right now!).

Find some small way to celebrate and make today a special day!  Happy Mardi Gras!

Mental Energy and ME/CFS

I have been struggling to think of a good title for this post for days, even though I had only written it in my head (I write so much that way!). It's something I've been wanting to write about, but I still don't know what to call it, so I will just jump in.

I just spent three weeks in a severe crash, feeling worse on some days than I have in years.  I am now feeling much better and have resumed my own version of "normal," and I have been struck - not for the first time - by the stark difference in my mental state between a crash and a "good" day. I'm not talking about the emotional effects of severe illness, though those are very powerful as well.

No, what I've observed, yet again, is a startling difference in mental energy that is intrinsically related to immeasurable things like motivation, drive, and desire. When I am severely ill with physical symptoms that are hard to describe - exhaustion, lack of energy, that all-over flu-like achiness - there is also a mental sluggishness present, a lack of motivation that makes accomplishing anything at all (regardless of the physical symptoms) a monumental struggle.

Cognitive dysfunction has never been a big problem for me, not even at my worst times in the past 10 years of illness.  Most of the time, my only sign of cognitive problems is some mild aphasia (word-finding difficulty) which is annoying for someone who makes her living writing but doesn't seriously interfere with my life, thanks to Word's built-in thesaurus. When I am severely crashed, I do experience some slightly increased brain fog, but, again, nothing severe. I have always been grateful for this blessing.

But this lack of mental energy (isn't there some official term for this? I guess it might be malaise, but I really hate that word; certainly it's not the dreaded F word) is overwhelming when I am crashed. For instance, let's say that on a bad crash day (like I experienced last week), I have cut my to-do list down to just three essential tasks - calling a doctor's office to make an appointment for my son, filling out a form and faxing it to my son's school for a scholarship application, and writing an e-mail to my editor. The lack of motivation and drive is so all-encompassing that it could take me days just to accomplish those few simple tasks.

Yes, I am feeling exhausted and achy, but it's not those physical symptoms keeping me from doing anything. It's a total lack of mental energy.  This is something almost impossible to describe to healthy people (including doctors), unless perhaps they have recently experienced a bad flu. When I'm in that state, I dread each coming day, facing that lack of drive and motivation, trying to get something done when I feel like my head is encased in Jell-o.

In contrast, when I finally feel like myself again (still with CFS but not so badly crashed), I am stunned by the sudden feeling of mental clarity, by the desire and the simple will to accomplish something.  I wake feeling glad to be awake, looking forward to the day to come. I feel motivated and productive and happy. It is such a stark change to how I feel when I am crashed that I feel full of joy.

My poor son is filled with this feeling, this lack of mental energy, every single day lately and is trying to finish his senior year of high school encompassed by this mental lethargy.

I think this is probably the worst part of ME/CFS, though it's something that is rarely talked about, unnamed, and never examined by doctors or researchers.

Is it the same for you?

Movie Monday 2/13

Hello?  Anyone still out there?  Sorry for being so absent the past couple of weeks.  I was pretty badly crashed - probably the worst I've been in years - and my 17-year old son has been even worse.  By the end of last week, I was REALLY scared that my Lyme had come back (i.e. never left).  I was a bit better this weekend and much better today, so I am hoping things are OK for me now, though I'm not jumping to any conclusions until I've had a few good days in a row. 

Jamie is still in terrible shape.  We are adjusting his Lyme meds, and he started Immunovir today.  Meanwhile, in the midst of a terrible crash, I had to go to his school last week for a very stressful meeting to try to get him more accommodations (my husband was out of town all week). It is unfathomable to me why they can't just provide the services he needs when we ask and why everything has to turn into such a big negotiation. It's been such a rough month for him, and all these school problems only make it worse.

So, by the time the weekend arrived, we were all ready for a little cinematic escape:

• Friday night, Jamie, Ken, and I watched Avatar. WOW. All of the accolades it received were well-deserved. Our kids saw it in the theater in 3D when it first came out, but Ken and I have been dying to see it for ourselves. Yes, the special effects are amazing, but it is so much more than a cool sci fi flick. Everything about it was amazing - the concept, the plot, the acting, all of it. It is set in the future, at a time when humans have ruined earth and have discovered another planet, Pandora, with lots of much-needed natural resources. The catch is that this planet is already occupied by sentient humanoid beings, the blue Na'vi, not to mention a wealth of flora and fauna. Humans develop a way to interact with the Na'vi, by using specially selected humans whose DNA is used to create Na'vi avatars who are controlled by their corresponding humans. It is all so cool. The main conflict in the movie is between the scientists, who want to study the Na'vi and develop relationships so they can negotiate for the resources they need and a huge corporation using the military, who favor just taking what they want. Some of the human avatars become very close to the Na'vi, adding another layer of complexity. It is all so good, so well done, so engaging and unique, and with so much depth. I want to be a Na'vi! Definitely worth watching.
• Saturday, after we canceled a dinner party we'd planned, Jamie, Ken, and I (yes, Craig had plans again!) rented a Redbox DVD, Drive. We had trouble categorizing this one - it's a drama with lots of action though without the suspense of a thriller and with more emotional depth than the typical action flick. Ryan Gosling stars as a stunt driver in LA who makes extra money on the side as a driver-for-hire for various criminals who need a quick escape. The main character (we never did hear his name) is the silent type, so we don't learn much about him, except that he seems to be falling in love with his neighbor and adores her young son. Of course, there are some car chase scenes but not as many as I expected. It is a dark, somewhat depressing movie, though it is well done and interesting.
• Last night, Ken and I started a movie I requested from the library in tune with the season, Valentine's Day.  Before the opening credits finished rolling, we both realized we've seen it before!  Sure enough, I checked previous Movie Mondays and saw that we watched it just about a year ago (see review). But we enjoyed it the first time and neither of us remembers exactly how it ended, so we are watching it again (we haven't finished it yet - can't stay up late on a Sunday!).  An unexpected benefit of brain fog :)

Have you seen any good movies lately?

New York Times Updates XMRV Saga

I'm sure most of you have heard of all the crazy, scandalous goings-on related to XMRV research these past six months.  Frankly, I've avoided writing about it here.  I just don't have the energy to address politics, scandals, and controversy, unless there is some valuable information in there for patients.

But now the New York Times has published a summary of the whole XMRV saga, from that first paper published in Science through to the recent arrest and the new charges against the Whittemores.  So, you can read all about it there, in case you haven't been keeping up.  It's a brief and easy-to-understand summary of the main events.

The Lipken study is still in progress to ascertain whether XMRV is a factor in ME/CFS, so we will see what results that brings.

No Way Out But Through

I keep thinking I need to write a blog post but what about?  The news from here is rather boring - we've had a triple-crash week.  Jamie, Craig, and I have all been down this week.  It's very unusual for Craig to crash at all, and he missed three days of school this week.  He went back today - got up this morning and on the bus by sheer willpower - he really hates being home and missing school and gets bored very easily!!

Jamie and I have both been very achy.  The aches in my legs were so bad at bedtime last night that I was in tears.  When all three of are down at once, it is almost certainly due to some sort of viral trigger.  When I took Jamie for his saline IV last night, the doctor said it's been a bad winter for viruses so far.  He said the old wive's tale that more people get sick during a mild winter is actually true.  So, I guess we were all exposed to something that has caused our immune systems to go even more crazy than usual.  Hopefully, it will pass soon.

We are getting more and more worried about Jamie.  He's only been in school 1 day out of the past 3 weeks and is getting further and further behind.  It's hard to see him lying on the couch day after day and suffering so, especially during a time of his life when his peers are so active and having so much fun.

So, one is back up and two are still lying here.  I have been continuing to push myself ("must get things done," "have to do this," etc.) but am trying to be smarter now and rest. In fact, I should set aside the computer and read my book now.  Even after 10 years, it is sometimes hard to remember that there is no way out of a crash but through it - and I will only make things worse by continuing to push.  Rest, rest, rest...

Movie Monday 1/30

Another rough week here, living the ups and downs of the CFS rollercoaster life!

Jamie ended up home and crashed all last week again, but he finally went back to school this morning, after three weeks on the couch.  He still has very low stamina and energy, but it is good to see the spark back in his eyes.  And, today, Craig was home sick from school!  Hopefully, it is just a crash from doing too much this weekend, though he is still feeling awful tonight.  I wonder whether I will ever again experience a quiet day of solitude when I can get some work done!

Poor Jamie has no social life right now.  He's a 17-year old senior in high school, and instead of running around with his friends, he is hanging out in the family room with his parents.  But watching a good movie is a highlight for him right now, so we enjoyed a couple with him this weekend:

• Craig had two friends sleep over Friday night, so Ken, Jamie, and I watched Abduction, starring Taylor Lautner of Twilight fame (or so I've heard).  It was an engaging thriller.  The main character, a high school student, discovers his own picture on a website for missing children during a research project for school.  He and his neighbor/classmate embark on a mission to uncover the truth about his background, but things quickly get dangerous, and they have to go on the run.  We all enjoyed this fast-paced action movie!
• Saturday, Craig went to a movie birthday party (once again, he is the only one in the house with a social life!), so Ken, Jamie, and I watched The Debt, a spy thriller starring Helen Mirren.  Her character is a retired Mossad agent who, along with two colleagues, helped to track down a renowned Nazi war criminal back in the 60's.  They became famous for their success, but now, in the present day, history is finally catching up with them as they are forced to revisit their past.  This was an excellent movie, with a chilling, thought-provoking plot.

Have you seen any good movies lately?

The Boring Sameness of Crash Days

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

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

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 Imunovir

In my post last week on immune system abnormalities in ME/CFS, I promised to follow-up with information on Imunovir, 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 Imunovir 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 Imunovir - 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.  Imunovir has been used safely in Europe and Canada for decades (it has not gone through the FDA process in the US for political reasons, not safety reasons).  My doctor gave me a prescription that I faxed to a pharmaceutical distributor in Canada.  Imunovir 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 (slightly different but similar), but I don't have any details on that.

Dosing of Imunovir 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 Imunovir 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, 1 at mid-morning, 1 with lunch, 1 after my nap (weekends off), and it seems to be working well for me.  To mix it up, sometimes I take only 2 pills a day for a week.

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 Imunovir, 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 Imunovir 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 Imunovir 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.

(NOTE: In an earlier version of this post, I had misspelled Imunovir as Immunovir.  I am including this note in the hopes that a search engine will still find this post, despite my mistake).

Movie Monday 1/16

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

(NOTE: Many of you expressed interest in hearing more about how Imunovir/inosine 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 inosine treats it. It's just too much for a single post. So, consider this Part 1, and you can read about using inosine as a treatment here. It's been very effective for my son and I.)

My Story
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. I could predict what symptoms would occur day by day. 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 ME/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 heart of ME/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 in most cases, 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.

Why Immune Dysfunction in ME/CFS is Unique
Most illnesses of the immune system fall into one of two categories.  There are deficient immune system, 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 main types of immune 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 from what I have read. 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).

Note that there is not complete agreement among scientists and experts on the role of Th1 and Th2; some sources say that Th1 are responsive to viruses and Th2 to bacteria. I have stuck with this explanation here because our own personal experience fits this theory perfectly; however, it might be different for you.

ME/CFS is thought to be 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 that we didn't have before ME/CFS.

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,  bronchitis, and other secondary bacterial infections. For instance, my son and I rarely catch colds, but if one of us got even a bit congested, we would quickly develop bacterial bronchitis, requiring treatment with antibiotics. (I am using past tense because treatments to normalize our immune systems have greatly improved this problem; we used to each get bronchitis 4-5 times a year, and now we each get it only every 18 months-2 years!)

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 is doing what it is designed to do, stimulating 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, like when kids at school have colds or my husband gets the flu.

This is a VERY simplified explanation of a very complex process that 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). As an example, this study from Stanford looked at the cytokine "signature" in ME/CFS patients, as a way to predict disease severity, and this comprehensive study from Columbia Medical School (which involved a who's who of the nation's top ME/CFS experts) took a look at all sorts of immune system markers in ME/CFS and were able to differentiate between the early stages of illness and later stages.

To Share with Your Doctor
One of the best resources I have seen in all these years is an older but still excellent article written by Dr. Nancy Klimas, published in 2007 in Current Rheumatology Reports, that details all of the known (at the time) abnormalities in ME/CFS patients' immune systems and how these lead to dysfunction in the endocrine and nervous systems. The paper is brief but contains dozens and dozens of references to scientific research studies that document these abnormalities, making it perfect to share with your doctor. 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.  Even though it is older and the science has advanced much further since it was written, it is still a good summary, all in one place. 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 read or download a pdf file of the entire article (it's 6 pages long).

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).


So What Can You Do About It?

Since immune system dysfunction is at the heart of ME/CFS, treating it can help to improve all symptoms. Although people with ME/CFS should avoid treatment that either suppress the immune system (like steroids) or "boost" it, there are a few medications and supplements available that can help to modulate or normalize the immune system. This blog post on Treating Immune Dysfunction in ME/CFS includes information both on improving immune function (which should help to improve ALL symptoms) and on treating underlying infections.

The three main treatments that have helped my son and I the most over the years in normalizing our immune systems are inosine, low-dose naltrexone, and glutathione - there are links to more information on all three in that post linked above. All three of those treatments are very inexpensive and easily accessible (inosine is even sold as a supplement) and have tremendously improved our conditions.

Movie Monday 1/9

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

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

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?

...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

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

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

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

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

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

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!

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

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

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

I thoroughly enjoyed spending time with my family, but, of course, it was tiring.  I managed better this time than past trips, though, which tells me that I am definitely doing a little better these days (probably due mainly to beta blockers and Immunovir).  I noticed I slept better; usually sleeping away from home is a huge struggle.

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

I thoroughly enjoyed spending time with my family, but my illness forms an invisible wall that now keeps me somewhat separate from everyone else.  There are a couple of people who understand how challenging our daily lives are, but most of my family has no idea how profoundly our illnesses affect every moment of our lives.  Of course, I don’t want to talk about our illnesses at social events; that would only make people feel uncomfortable.  It’s just that I am living in a completely different world than everyone else.

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

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

More than those physical differences, though, are the differences that come up during conversation.  My cousins were all trading stories about taking their kids to amusement parks, Disney World, water parks, etc.  Those kinds of places are like Kryptonite for someone with CFS!  They began making plans for all 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 day there and Jamie probably couldn’t right now either.

My best friend from high school has taken up running…not just any running, but marathons!  She’s running 26.2 miles at a time, and I feel awful tonight because I went to the grocery store today.  She also talked about triathlons, how much fun spinning class is, her job, and all the travel and hiking she’s been doing.  Even talking about our kids is tough because Jamie is so far from a normal teen right now.  I love her – she is still my soul sister – but we seem to have little in common anymore.  It just makes me kind of sad, you know?

I don’t want to feel these barriers between me and my loved ones.  I’m used to being a what-you-see-is-what-you-get kind of person, but that’s no longer true.  People look at me and I seem normal and healthy, but I’m not.  I’m missing the emotional closeness that comes from shared experiences.  Maybe this is why I enjoy my book groups so much – discussing books is one thing I can do just like everyone else.

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

And then I realized there were people I could talk to who would totally understand…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

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

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

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

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 March 2002.  Both of my sons, ages 13 and 17 have it also – they’ve both been sick for seven years.  I spoke at the May CFSAC meeting with my family about the need for attention and research on pediatric ME/CFS.  Today I would like to focus on the educational challenges for children and teens struggling with this illness.

Both of our sons have managed to keep up with their classmates in school throughout their illnesses, but my husband and I fought many battles with school administrators and teachers to afford them this right.  Our sons are both very bright and are good students, and that has helped as well.  We have often asked ourselves, “What happens to kids that struggled with school before they got sick?  Or kids whose parents aren’t as able to fight for them or who aren’t as well-informed?”  The answer is that those kids, as well as kids who are too severely ill to go to school, are getting left behind.

Through much of the past 7 years, our sons have been able to attend school at least part-time, thanks to treatment for Orthostatic Intolerance.  In working to get them the accommodations they needed at school, we encountered many barriers along the way, most of them due to a lack of knowledge about ME/CFS.  One school nurse actually called our pediatrician and yelled at her for 45 minutes, saying she didn’t believe the doctor’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 with our son, saying that if he was sick, he needed to be on 100% homebound instruction, despite the fact that he was sometimes well enough to attend school.  When we had the backing of a supportive principal, those teachers were forced to comply with his accommodations, but in some cases, we just had to work around those teachers.

Our son’s 5^th grade teacher interpreted his newly severe cognitive dysfunction as behavioral problems, telling us that our normally obedient, straight-A student was “a defiant, cheating, disobedient child.”  In all cases, we persevered, gaining support wherever we could, from principals and guidance counselors and in some cases, calling district-level or state-level administrators.  We educated ourselves on the law and what our sons’ rights were.  All of this, and especially the hours-long, often combative meetings, frequently resulted in a relapse of my own symptoms.

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

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

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

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