Disappointed, Again

I had a great plan for today. First, this week is supposed to be my Anti-Procrastination/Catch-up Week - I decided on Sunday to set aside this week to get all the things done that I have been postponing for too long - the phone calls, e-mails, etc. that have been on my to-do list for far too long. And today, I was going to jump into that project. I went to bed last night feeling relatively good (for night-time) and motivated to hit that list today. I've also rededicated myself to trying to lose a couple of pounds and slim down a bit - my sweet tooth has been taking over lately! It's becoming super-hot and humid here in Delaware now, so my plan was to take an early morning walk (i.e. 9 am) before it gets too hot. So, I got up this morning, got dressed in cool, wicking shorts and shirt, ready for my walk.

So what happened?

I have a killer sore throat and a sore mouth, too. I suspect I've got another case of thrush, which crops up periodically ever since my 3-year long Lyme treatment. It's not bad enough yet to look really bad, but these are my early warning symptoms. Of course, the sore throat could "just" be a typical CFS crash, but my tongue hurts, too. So, I am taking it easy and saving what meager energy I have (I do still have to make breakfast for my son and his two sleep-over friends, run to the farm to pick up our weekly veggies today, and make dinner  tonight). I am also taking lots of oregano and olive leaf (both potent anti-fungals) plus extra probiotic.

I should be used to this kind of last-minute change now, used to the disappointment of not being able to do what I want to do. In fact, I even came up with a name for days like this - it's a Plan B day. But, after 11 years, it is still disappointing to have to give up my plans. Despite how bad I am feeling (the aches are creeping in now, too), I am still yearning to take that walk in the sunshine and tackle that to-do list. sigh....

I know, I know. I'm resting.

May 2013 CFSAC Meeting Videos Posted

CFSAC has posted videos from its most recent meeting, held on May 22 - 23, 2013. Here are all the links (copied from an e-mail, so I don't know what the formatting will look like):

CFSAC Spring 2013 Meeting
(I always find the Public Comment periods interesting, and this meeting also included - for the first time - public Q&A sessions)

Welcome & Call to Order - Day 1,  May 22, 2013, 9:00 - 10:30 AM

Public Comment on Day 1, 10:45 AM - 1:00 PM.

Approve Prioritized Recommendations List - Day 1, 1:00 - 1:30 PM.

Determination of Medicare Coverage of Test and Treatments - Day 1, 1:30 - 2:30 PM.

Public Question & Answer on Day 1, 2:45 - 3:15 PM.

Committee Discussion and Plans for Day 2, 3:15 -- 5 PM.

Opening Remarks on Day 2, 9:00 - 10:15 AM.

Health Insurance Marketplace - Day 2, 10:15 - 11:00 AM

Public Comment on Day 2, 11:15 AM - 12:15 PM

Public Question and Answer on Day 2, 1:30 - 3:00 PM.

Committee Discussion on Day 2, 3:00 - 3:30 PM.

Committee Discussion (Part #2) on Day 2, 3:30 - 5:00 PM

Mixed Feeling About Reunions

I've been on an emotional rollercoaster lately. The silly reason? A bunch of my old friends are all going to our college reunion this summer. One friend started a Facebook event to see who was planning to attend, and I watched the enthusiastic replies pile up with envy. Literally dozens of the women who were in my sorority are all planning to go back to campus in July for this summer's reunion. The two colleges in town hold a reunion every summer, but this is the 25th for the girls who were one year behind me, including many of my close friends.

Right from the start, I felt like there was no way I could go to the reunion. For starters, I went to college in the middle of nowhere in the very northern reaches of New York state, north of the Adirondacks and not too far from the Canadian border. So, even if (hypothetically) I could afford a plane ticket, the nearest airport is still a 3 hour drive away from our college town. The logistics tortured me: I could fly into Syracuse, rent a car...no then I'd be too worn out by the time I got there. OK, I could get a ride with a friend from Syracuse...no, then I wouldn't have my own car so I could go rest whenever I need to. And even if I could figure out how to get there, how on earth would I manage the many hours on my feet, as all my friends  - there for a wild girls' weekend - walked into town and stayed out until 2 am? I considered and discarded various options and finally just gave up.

But as I watched the excitement build among my friends, I felt so left out. How do I explain to all of them why I can't make it? Just telling someone you have a chronic illness doesn't cut it - how can anyone possibly understand all the restrictions we live with every day? Many of them are staying in a group of townhouses they rented together.

Then I started chatting with a friend of mine from the sorority who graduated the same year as me. We've become even closer recently, since finding each other on Facebook. She said she was bringing her daughter with her to alumni weekend and that she can not drink alcohol because of medical problems either. She got me thinking - here's someone who's going to go back but isn't going to do the wild weekend thing....

I finally came up with a workable plan and made reservations! Our whole family is going up there, with our camper, making it into a mini vacation (which we desperately need anyway). I reserved a spot at a campground 25 minutes from town (in the lovely Adirondack foothills). My husband will do all the driving, I'll have my comfy camper to rest in when I need to, and I can make a trip or two into town to see my friends for a limited, manageable amount of time.

I'm so excited to finally be going, but a part of me is still worried about what it will be like to stick out like a sore thumb. The thing is that I was a bit of a party animal in college! I had crazy energy back then - got a chemical engineering degree, was president of my sorority, and spent my weekends going wild with my friends. I drank way too much back then, danced for hours, sang/screamed until I was hoarse, and stayed up all night.

Almost all of them - except that one friend - are going to alumni weekend on their own, without families, for a "girls' weekend." I know they'll be ready for a wild weekend of drinking, dancing, singing, and having fun. I used to be the life of the party, ready for anything. This time, I'll only be able to manage a couple of hours at a time, no alcohol, no dairy (the wine and cheese party Friday should be fun!), no staying up late. Going downtown to our old hang-outs is definitely out - I'll be lucky if I make it until 9 pm!

My 30th high school reunion is also this summer, and I am almost relieved that I definitely can't go to that one! We will be away on vacation at that time. I did go to my 20th...just months after finally getting a diagnosis for my mystery illness. That was definitely strange. I wasn't even comfortable with having a chronic illness yet myself, so explaining it to people I hadn't seen in 20 years was just plain weird. It's hard to know what to say when someone gives you a big hug and says, "You look great! What have you been up to?" Uh...lying on the couch and getting blood tests?

Ten years later, at least I am more comfortable - and more happy and settled - in my life with chronic illness, so that helps. The other thing that helps is social networking. Many of the old friends I will see at my college reunion already know I have CFS because we've been in touch on Facebook. Of course, they don't understand the extent of it or how restricted my life is. In fact, I wished an old college friend a happy birthday yesterday, and she replied how much she enjoys my Facebook posts and how busy I am! Um, yeah. How do you respond to that?

So, I just have a lot of mixed feelings. I am very excited to see everyone again and to show my kids around my old college campus and the town. That one friend and I both feel better knowing the other will be there, so neither of us will be the only one not partying - she told me, "It will be wonderful to have a fellow-mellow-sober alumni to share the experience with!" Love that. So, I am mostly excited, but I know it will be tough to tiredly head back to our camper when all of my friends are just getting started for the night. I'm also not looking forward to the explanations. There's a fine line between helping an old friend understand and not making others feel uncomfortable or pitying.

But I am going! That alone feels like a triumph.

Well, I feel better just talking it out - thanks for listening!

(P.S. Just to save you the trouble, I generally only "friend" people on Facebook that I know in person, close friends and family - otherwise, it just becomes too much for me to keep track of. But I'd love to get to know all of you here on the blog, so feel free to leave a comment!)

Movie Monday

Well, we made it through the first week of Craig's post-op recovery. As I mentioned in my last post, he is doing great - much better than expected - and avoided a CFS crash completely. A miracle!

He is still mostly immobile, though he can get around the house a bit on crutches. So, we have been watching a lot of TV, but not as much as after his last two surgeries. Since he's feeling so much better, he's been mostly playing video games with his brother and some friends who've visited.

So, we watched just one movie last week, a classic 80's comedy, Animal House. Believe it or not, I was a teenager in the early 80's and had never seen it! It was, of course, exactly as expected - goofy, sometimes raunchy, comedy. Lots of fun watching John Belushi's antics and laughing at the craziness of the Delta house. Funny thing is that there was a fraternity on my college campus EXACTLY like the fraternity in Animal House. They used to throw furniture and TVs out of the third floor windows for fun (and that was one of the milder things they did). So that was a fun distraction.

Mid-week, a DVD we'd requested from the library finally came in, the fourth season of In Plain Sight. Since there's only one copy of each season in our entire state library system, and there is usually a waiting list, we are trying to watch the entire season in one week! Fortunately, the kids like this great series about the Witness Protection Program as much as my husband and I do, so we've been flying through the episodes. The show has interesting cases each episode but also a great sense of humor. We've set everything else aside for the time being, though my husband is very eager to start watching one of his Father's Day gifts, season one of The Game of Thrones!

Oh, and Ken and I did have one hour to ourselves when the boys had friends over this weekend, so we watched the pilot of Graceland, a new TV show about a house in southern California filled with undercover government agents from FBI, DEA, and Customs - seems like a great show so far!

Have you seen any good movies or TV shows lately?

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

Post-Op Recovery

Well, I think I am finally recovered from my son's surgery - ha ha. I know that sounds strange (maybe not to you guys), but the two-day ordeal at the hospital took a lot out of me. This week has been a lost cause - I've been wiped out and using all my limited energy to take care of him during the day. I felt good on Wednesday and thought I'd finally gotten past it, but then I woke up Thursday feeling awful - very achy and sore throat. I had used my newfound energy on Wednesday to go to the grocery store AND to my library's monthly noon book discussion (I know, I know - I am living a wild life here!) Guess that was too much for me. So, once we got back from the doctor's office yesterday, I rested the rest of the day. I've been taking long naps in the afternoon. Hopefully, I'm past the worst of it now.

As for my son, he is doing great, and we are amazed - and grateful! The difference between this knee surgery and his first two is like night and day, and the odd thing is that this was the more extensive one. The surgeon actually had to make a full incision; the first two surgeries were just arthroscopic. The first surgeries caused a severe CFS crash each time, lasting 3-4 weeks. His CFS is usually mild and completely controlled by Florinef, so we were surprised when he was so totally wiped out for a month afterward.

So, why is this time different? I think I've figured it out.

All three times, we printed this great article on surgery and CFS and handed it out to the surgeon and anesthesiologist, and all the doctors were very accommodating each time. They were familiar with various types of Orthostatic Intolerance (OI), they chose anesthesia that was better for someone with OI, and they made sure to give him a saline IV.

This time, however, his surgery was delayed for 6 hours and he ended up having to spend the night in the hospital. This inconvenience turned out to be the best thing that could happen! They kept him on a saline IV all night long, and I'm pretty certain that is what made the difference! Our older son used to get weekly saline IV's to treat OI, so we know what a dramatic effect they can have on someone with OI. The anesthesiologist also explained to me this time that ALL types of anesthesia have some vaso-dilating properties (very bad for someone with OI as dilating the blood vessels makes it even harder for us to circulate enough blood to brain and heart), so they chose the least vaso-dilating but couldn't avoid it altogether. I suspect that the extra saline IVs not only helped to increase his blood volume but also helped to counteract the vaso-dilating effects of the anesthesia.

So, after the first two surgeries, he was totally wiped out for a full month - just lay on the couch, watched TV, and didn't have the energy to get up even when his knee pain began to subside (you know, the basic CFS crash). This time, by the second day post-op, he was sitting up, talking animatedly, and playing video games. He even had a friend over just a few days post-op to play games with him! Even better, because he isn't crashed, his pain is much better, despite the fact that it was more extensive surgery and should be hurting more than before. He's already started to reduce the dose on his pain killers; after the first two surgeries, he stayed on the maximum dose for two full weeks.

All of this is just amazing to us...and wonderful! Lessons learned: not only to share important information with the doctors ahead of time, but request extra saline IV's (at least 2 liters) - the lost sleep due to the overnight in the hospital was more than made up for by the extra saline. Now I just need to recover - maybe next time we'll ask for a saline IV for the patient's mom, too!

Movie Monday 6/10

Whew - a long and difficult week here - school ended on Thursday for our 15-year old son, and he had knee surgery on Friday. I knew it would be a long day for all of us, but it turned out even longer than we'd anticipated - a real marathon for someone with ME/CFS! He was scheduled for surgery at 11 am, so we got to the hospital at 9 am, as directed. There was some kind of emergency involving our surgeon, and he never got to our son until 5 in the evening! By then, he'd been without food or water for almost 24 hours, and we were all exhausted. He ended up spending the night, and we had another long day at the hospital on Saturday, trying to get him discharged.

So, not much time for movies last week, but my husband and I watched a DVD Thursday night while our sons were out with friends:

We watched The Oranges, starring Hugh Laurie (of House fame), one of our favorite actors. This is a somewhat quirky movie, about two families in East Orange, NJ, who have lived across the street from each other for decades and are close friends. Close that is, until the husband in one family (Laurie) has an affair with the 24-year old daughter from the other, which sends all of them into chaos. There are lots of funny moments in the movie, but it is also sincere and heartfelt, delving into issues of family, friendships, and happiness. It's fun, lively, and entertaining with a talented cast.

Have you seen any good movies lately?

Movie Monday 6/3

Another week gone by without much blog posting - so sorry for that! Things were crazy busy here last week. My oldest son came home from college (victorious after a great freshman year!), and our house was filled with college students and friends old and new all week. It's been a lot of fun....but also lots of cooking for me! Today, he started his one class for summer session (commuting to school every day for 2-3 hours of Calculus), my younger son has a hectic week of final exams, and I have my last few hours of quiet solitude until September! Friday, my younger son has his third (and hopefully, last) knee surgery. So, another busy week.

We did have time for one movie last week:

Saturday night, my sons had friends over for a movie night in the basement, so Ken and I watched Promised Land, a fairly new release starring (and written by) Matt Damon and John Krasinksi (of The Office fame) about a current hot topic, natural gas and fracking. Damon plays Steve, a guy who works for a giant natural gas corporation. His job, along with his partner, played by Frances McDormand, is to travel to small towns where there are natural gas deposits and convince all the land owners to lease portions of their land to the company so they can drill there. They travel to a rural Pennsylvania town and find they have some opposition: a high school science teacher, played by Hal Holbrook, who speaks out against the risks of fracking, and an environmentalist, played by Krasinksi, who tells the townspeople how his own family farm was ruined by polluted water caused by fracking. From this, it sounds like simple good vs. evil, with Steve respresenting the evil, greedy corporation, but he actually loves his job and believes he is helping these small farming communities to survive by bringing them some much-needed income; he saw his own farm town in Iowa die out after a local factory closed. And, there is a pretty love interest, of course, played by Rosemarie DeWitt whom both Damon's character and Krasinsksi's character are interested in. As you might imagine from this description, it is somewhat political, as this is such a hot topic right now, though the film remains fairly neutral and tries to present both sides. It was an interesting movie, with a fabulous cast that was fun to watch. Not a great movie, but good entertainment for a Saturday night.

We've also been catching up on TV shows with Jamie since he got home - he and I watched the end of the season of White Collar, he watched the finales of The Office and Grim (season finale), and the whole family has been catching up on missed episodes of Revolution.

Have you seen any good movies or TV shows lately?

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

Movie Monday 5/27

Happy Memorial Day to everyone in the U.S.! I've been thinking a lot today about my grandfather, my uncle, and my great-uncles, who all served in the military at various times and are no longer with us. They are all missed.

We had a very low-key, relaxing holiday weekend. Just what we needed! Our younger son traveled to Connecticut to help his grandparents get their sailboat ready for the season, and our older son came home from college last week, so it was odd having the older one here but not the younger one. Our  college son, Jamie, was off with friends for much of the weekend (he is still feeling great!), but he also spent some down time watching movies with us and catching up on TV shows:

Friday night, while my husband was out golfing, Jamie and I ordered pizza and found an interesting-sounding movie available for free on amazon, Surveillance. We were both a little disappointed in it, but it was OK. It's about two FBI agents who come to a small town to help the local police track down some brutal serial killers. There were three survivors from the killers' latest massacre: a little girl, a woman who's a drug addict, and a police officer. The movie follows each of their interviews, but their stories just don't add up. There are some surprises here (though Jamie said he figured it out half-way through!), and it's a unique story. It's just not an excellent movie - decent but not excellent.

Saturday night, we watched a much better movie, District 9, a unique sci fi story. A giant alien spaceship came to Earth 20 years earlier, hovering over Johannesburg, South Africa. Humans broke into the spaceship, captured all the aliens (who look kind of like giant insects and are nicknamed Prawns by the locals), and segregated them into one area of the city, known as District 9. The area soon became a slum, but violence and problems between the local humans and the Prawns have accelerated. When the movie opens, the humans have decided to relocate the aliens into a desolate area outside of the city, and members of a huge corporation that has been put in charge of the aliens are going into District 9 to evict all the Prawns. This was a fantastic movie, far better than I expected. I thought it would be all action and violence - and there is certainly some of that - but the heart of the story is the humans' mistreatment of the alien species and what happens to one particular alien and one particular human. All three of us loved it - interestingly, you find yourself rooting for the aliens!

We also tried a new TV show this weekend, Defiance. It's another sci fi story, this one set 30 years into the future after aliens have invaded earth, in a town called Defiance where humans and various alien species live side by side peacefully. We've watched the first two episodes and are hooked already!

Have you seen any good movies or TV shows lately?

Watch CFSAC Live Today

Better late than never....crazy week here.

Yesterday and today is the Spring 2013 meeting of the CFS Advisory Committee to the Department of Health and Human Services in the U.S. You can watch the meeting live here. And here is the meeting agenda so you can decide which parts you'd like to see. There is a public comment period scheduled for 11:15 am EST today and a public Q&A period (new feature!) at 2:45 pm. The main talks today are on Health Insurance at 10:15 am and (my personal favorite) How To Get More Clinicians Involved in ME/CFS? by Dr. Susan Levine at 1:30 pm.

So, tune in at least for a part of the meeting, if you can. The public comment and Q&A periods yesterday were very interesting.

We're on the road today, going to see my son's Lyme doctor in NJ, so I'll miss most of today's webcast, but CFSAC will post videos of each portion of the meeting afterward.

Movie Monday 5/20

Busy, stressful week last week for me, but it improved toward the end. I went out with four of my closest friends for dinner Thursday and came home feeling relaxed and happy - nothing like some girl talk to make you forget all your problems!

We saw a couple of good movies this weekend:

Friday night Craig had a friend sleep over, so Ken and I watched Silver Linings Playbook (yes, finally!). It's a funny, frantic, big-hearted drama about mental illness. Bradley Cooper plays a guy recently diagnosed as bipolar who has just been released from a court-ordered stay in a mental hospital after severely beating his wife's lover. Cooper does a fabulous job playing the often-manic Pat who has moved in with his parents in Philadelphia (his dad is played by Robert DeNiro) to try to recover and put his life back together. He is still in love with his wife but unable to see her because his restraining order is still in effect. He meets his best friend's sister-in-law, Tiffany, played also fabulously by Jennifer Lawrence. Tiffany has her own problems - she is trying to recover from severe depression (and compulsive sex) after the death of her husband. Pat and Tiffany become friends and enter into an agreement to help each other: Tiffany will help Pat contact his wife, and Pat agrees to help Tiffany with an upcoming dance competition she wants to enter.  Although there are plenty of funny moments in the movie, the lead characters' mental illnesses are dealt with realistically and sensitively. The movie's setting in Philly is also done perfectly (we live just south of Philly) - they really captured the local color and Eagles' fanaticism!  Great casting, great acting, great dialogue - it's just an excellent, satisfying movie from start to finish.

Sunday night, Craig and Ken and I took a totally differently tack and watched a comedy, Guilt Trip, starring Seth Rogen as Andy, a chemist, and Barbra Streisand as his mother, Joyce. Ken and I aren't huge fans of Rogen, but the movie was pretty good. Joyce is an overly attentive mother who has been widowed for many years and has given up on love. Andy asks his mother to join him on a cross-country road trip as he tries to launch his own business, though he has an ulterior motive in asking her along. Although the smothering Jewish mother jokes got a little old for me at one point, the movie is more than just an on-going series of gags (thankfully) - it actually has some heart in it and some underlying emotional depth as the mother-son relationship evolves. It's not Oscar material, but it was a pleasant 90 minutes.

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).

Post-Mother's Day Crashette

This is my new favorite word: crashette. A friend and I were e-mailing about lunch plans for tomorrow, and I warned her I wasn't feeling well today so would have to see how I'm doing tomorrow (she is very used to my not being able to plan ahead and is very patient!). She replied that she hoped this was just a "crashette" and not a full-blown crash. Isn't that great? Love it. And, yes, this is an amazing friend who is very understanding and kind.

So, I apparently did too much this weekend, but I am hoping the crash doesn't last too long. For Mother's Day, we visited my mom in Connecticut, along with my sister and her family. On Sunday, my mom and her husband had planned a big scavenger hunt at a local beach park for all 10 of us. In past years, I haven't been able to walk around for this type of thing, but - thanks to beta blockers and my heart rate monitor - I managed pretty well this year. I was teamed up with my mom's husband, my sister, and my fabulous 11-year old niece, and we had a lot of fun. I have been working on increasing my stamina and can now handle up to a 40-minute walk on a good day (staying within my heart rate limitations) without crashing the next day. But, by the time we got back in the cars, my heart rate monitor showed we'd been walking around for 1 hour and 30 minutes! Definitely beyond my limits.

As is often the case, I was OK yesterday, but the effects hit me last night, and I woke up today feeling crummy. I have learned, though, after 11 years, to give in and take care of myself when I crash now. I am not a quick learner, but I am finally trained in this respect!  So, today was a Plan B day, and I not only rested physically but gave in to a restful mindset right from the start of my day. I am hoping to feel well enough tomorrow to manage that lunch with my two close friends (and a meeting in the morning with my lawyer to close out my disability case with him).

I am not the only one still trying to recover from the weekend. In addition to the scavenger hunt, my sons were both up until 11 pm both Friday and Saturday night and were exhausted by the time we got home on Sunday evening. Amazingly, my 18-year old is doing fine now and hasn't missed any classes in college, but my 15-year old is still wiped out and also suffering from exacerbated allergy symptoms. he made it to school yesterday and today but took a nap as soon as he got home (he's in bed now).

So, we are resting and waiting and hoping these are just crashettes for us both. It was worth it to spend time with my family and especially with my niece and nephew!

My family after our scavenger hunt on Mother's Day

International ME/CFS Awareness Day 2013

I realize I am a day late, but I was away all weekend visiting my mom for Mother's Day and her birthday (I hate how Awareness Day always falls near Mother's Day weekend!). I figure we can use all the awareness we can get 365 days a year, so better late than never...

For starters, here is what I am posting on my Facebook wall for my friends and family (to keep it manageable, I only friend my family and in-person friends on Facebook), along with a link to this post:

"Yesterday, May 12, was International ME/CFS Awareness Day. ME stands for Myalgic Encephalomyelitis, the name by which this devastating illness has been historically known throughout the world, and CFS stands for Chronic Fatigue Syndrome, the silly-sounding misnomer the CDC saddled us with in the 1980's. I have had ME/CFS since March 2, 2002, and both of my sons have had it since 2004. Scientists have confirmed that this disabling illness has both genetic and infectious components, though they have not yet pinpointed the cause(s) or cure. At its heart, ME/CFS is an immune system disorder, causing parts of the immune system to over-react and parts of it to under-react. In a devastating cascade of effects, it causes problems with the immune, endocrine, and nervous systems. The mitochondria (i.e. energy producers) in our cells don't work properly and don't process oxygen normally so that even mild exertion - like a short walk or going up the stairs - can result in suddenly feeling as if we have the flu, and those effects can last days or even weeks. Jamie, Craig, and I have all improved somewhat with various treatments (mostly lots of medications), but not everyone is so lucky. Many people with ME/CFS are housebound or even bedridden. For more information and to learn how to help, check out this blog post." (with a link to here)

Besides helping to educate your friends and family (most of whom probably want to know more but don't know how to ask you), here are some other ways to help further ME/CFS education and research:

• Learn more about ME/CFS. Here are some sources of information you can share with others:

1. About CFIDS by the CFIDS Association
2. An Overview of Chronic Fatigue Syndrome by Phoenix Rising
3. The CDC's information on CFS
4. My own article, CFS: An Invisible Illness, published last fall on Lively Woman
5. Our public testimony on pediatric CFS at last year's CFSAC meeting.

• You and your friends and family can also donate money to help fund badly-needed ME/CFS research. I know the economy has been rough lately, but you could always do what we've done and just switch some of your charitable giving from other organizations to one or more of the following ME/CFS-related charities:
• CFIDS Association of America/Research 1st
• Open Medicine Institute (click in the upper right corner to donate)
• ME/CFS Australia
• Simmaron Research
• ME Research UK
• You can also donate to ME/CFS research without spending any extra money by using a shopping donation site or links like:
• iGive
• Good Shop
• You can even earn money for CFS research when you use a search engine:
• Good Search
• iSearchiGive

Happy (belated) Awareness Day!  Help to spread the word!

(feel free to link to this page or share its information)

The Thrill of Victory and the Agony of Defeat

Even after 11 years of living with ME/CFS, the emotional highs and lows that go along with the unpredictable physical symptoms still take me by surprise. I know intellectually that it's all about chemistry - cellular metabolism, hormones messed up, neurochemicals in the brain present or absent - but it still feels like some kind of voodoo when these ups and downs hit me.

This week has been a typical rollercoaster in that respect. I'm going without Imunovir for the 3rd week in a row (it's been back-ordered - more on that next week), so I expected to feel awful, but I've actually been doing pretty well - just when you think you can predict this crazy illness, it proves you wrong, just to keep you on your toes! Monday night, I was looking forward to the next day - nothing special going on, but I was feeling good and just looking forward to another good day.

I woke on Tuesday feeling a bit tired but thinking I'd be OK. I had to drive my husband to the eye doctor for a retinal check (all good!), and while I waited in the waiting room, I felt worse and worse. By the time we left there, I was achy all over, exhausted, even getting a mild sore throat - you know, typical CFS crash. But we had some errands to run, and we had been looking forward to having lunch together, so I kept going. An hour later, I was hitting bottom, not just physically but emotionally, too. I was feeling like I just couldn't take another moment of being in the car, and even after I got home and into bed, I felt horribly depressed, thinking to myself that I couldn't possibly tolerate a whole lifetime of this torture. Now, that is a pretty normal feeling for many people with ME/CFS, but as I said, I've actually been quite well lately. I couldn't believe that one bad day could put me in such a dark state of despair.

The next day, Wednesday, I woke up feeling good again. I was able to go through with my plans to go shopping for Mother's Day and my mom's birthday (both this weekend) and took advantage of the rare shopping excursion to get a few things for myself, too. I had another good day today, picking up the house for our cleaning service, dancing to the radio, sending my gifts from the Post Office, and even doing a little weeding in our flower bed (yes, all in one day!).

During these last two good days, I have been feeling euphoric, absolutely filled with joy and grateful for every small thing in my life. Like I said, I know it's all brain and cellular chemistry, but it still feels so miraculous...and bizarre. If I didn't know better, I would fear that such drastic mood swings meant I was losing my mind! But no, it's just another "normal" week in the crazy life of someone with ME/CFS, riding the rollercoaster of chronic illness. Wheeeee!

Videos from FDA ME/CFS Workshop Posted

The FDA was very quick to post videos from their recent workshop on Development of Safe and Effective Drug Therapies for CFS and ME (I was a little slow, but they were quick).

If you go to this website, you will see a list of archived videos. They conveniently broke the meeting down into manageable pieces, so you can just watch the parts that are of interest to you or watch them all, one at a time, when you're able to.

I saw some of these live (but not all of them). I highly recommend any of the patient panels - it was so exciting to watch all these people from the FDA listen to what regular ME/CFS patients and clinicians had to say! One of my favorites was Patient Panel #2.

This meeting was ground-breaking! Hope you enjoy peeking in and seeing for yourself.

Movie Monday 5/6

Ahhh...a quiet and peaceful Monday. I needed that. My 15-year old son, Craig, was home sick all last week with a sinus infection that made his CFS flare-up, so it was a treat today to be home alone, without the TV constantly blaring. And, of course, I was glad he is feeling better!

Despite all the sick days last week, we didn't watch a lot of movies. I've almost given up on convincing my son to watch movies when he is sick. He's got a short span of attention and prefers TV shows - even if he's seen them a half dozen times before! So we watched lots of episodes of his favorite TV shows, including Community, The Office, The Big Bang Theory, and The Middle. Yes, he likes comedies!

We had a very busy Saturday. My mom and her husband were visiting from Connecticut, I had a book signing in the morning, then Craig had a soccer game in the afternoon. By 5 pm, he and I were both exhausted, so we came home with my husband, ordered pizza, and watched a movie we've all been wanting to see:

The Hobbit. Our oldest son saw it at a midnight showing the night it was released (now you know he is doing better!), but the rest of us missed it in the theater - I bet it was spectacular on the big screen. My son and husband especially enjoyed it, as they are both huge fans of Lord of the Rings (my son loves the movies, and my husband loves the books!). It is an epic fantasy, much like the LOTR trilogy movies, with stunning scenery shot in New Zealand, all kinds of fantastical creatures come to life, and gruesome battle scenes. Although it was a bit more action and violence than I usually like in movies, I did enjoy it. When I first met my husband 25 years ago, I'd never read any Tolkien, and he introduced me to The Hobbit, which we read aloud to each other when we were dating. So, I have great memories of the story and especially enjoyed seeing the scene in the cave with Gollum come to life ("What's he got in his pocketses?").  We are all looking forward to the next two movies!

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.)

Movie Tuesday 4/30

Ah, yes, running behind as usual! We had a lovely weekend camping - very relaxing - but re-entry has been tough. More on that later. For now, I thought I'd tell you about the movie we watched last week, before it's next week!

My husband was home from his business travel last week, but he had dinners for work 3 evenings! So, my 15-year old son, Craig, and I were still on our own a lot. Thursday, we did an easy evening - got take-out for dinner and rented a movie, Playing for Keeps. Craig wasn't sure about it at first, but we both ended up enjoying it. It's the story of a professional soccer player named George who has retired and is now an out-of-work soccer player. He's moved to Virginia to be close to his son and his ex-wife (played by Jessica Biel), whom he still hopes to patch things up with, but when he arrives, he finds that she is engaged to marry someone else. Somehow, George gets roped into coaching his son's soccer team, and the moms all go crazy for the handsome soccer player with the Scottish accent. With all that unwanted attention, George has trouble staying on track, but is determined to spend time with his son and win back his wife. It's basically a romantic comedy, but with a fairly unique (though not all that realistic!) plot. Craig and I both enjoyed it, with plenty of laughs, a great cast (including Dennis Quaid, Uma Thurman, and Catherine Zeta-Jones), and some good soccer scenes.

When my husband came home from his dinner, we told him about the movie, and I asked if that's what coaching our sons' soccer has been like for him - constantly fending off the predatory moms who just want his body! He said it's been just like that ;)

Have you seen any good movies lately?

Must-See Webcast!

I managed to catch a couple of hours of the FDA Workshop for ME/CFS this afternoon after my nap. Wow.

This is truly an amazing thing happening - between the patient panel and interactive discussions with the entire audience of patients and public testimony, the FDA is spending two days listening to dozens and dozens and dozens of patients and doctors talk first-hand about their experiences with ME/CFS. This meeting is going to be a game-changer!

If there is any way you can tune in for at least a portion of the meeting tomorrow, you should! Here is the agenda and here is the link to the live webcast.

I am wishing now that I had gone to the meeting myself. I was asked to be on one of the patient panels, but I have been struggling a bit lately and didn't think I could manage it. But I am definitely going to submit my comments (FDA will accept them until August 2).

Watch FDA's ME/CFS Workshop Live Webcast

The landmark FDA Workshop on Drug Development for ME/CFS starts Thursday afternoon and runs through Friday. This is a BIG DEAL for everyone with ME/CFS, all over the world. It is the first of a series of workshops the FDA has planned for illnesses/medical conditions that have been traditionally overlooked in drug development (yes, CFS is first for once!).

Although a big deal was made of pre-registering for the live webcast, it looks like you might be able to watch it even if you did not register ahead of time. The links for the live webcast are on this page, and this is also where the video archives will be posted after the meeting.

The meeting runs from 1-5 pm on Thursday, April 25, and from 8:30-5 on Friday, April 26. There will be presentations by top ME/CFS experts, as well as several panel discussions including patients. Here is the full meeting agenda. The main patient panel discussions are scheduled for:

• 1:30 pm Thursday
• 2:55 pm Thursday
• 10:25 am Friday

There are also patients involved in other aspects of the meeting.
(Note that all times are Eastern Time)

Also, it is not too late to let YOUR voice be heard! The FDA will be accepting written and/or video testimony until August 2. Just leave your comments or upload a video or Word file at this page. (See the questions below that the FDA is particularly interested in having answered by patients).

So, send in your comments and tune in as much as you can over the next two days, so we can show the FDA how much interest there is! This is a ground-breaking meeting for the ME/CFS world, and you won't want to miss it!


[FDA wants your answers to these questions:

Topic 1: Disease Symptoms and Daily Impacts That Matter Most to Patients

1. What are the most significant symptoms that you experience resulting from your condition? (Examples may include prolonged exhaustion, confusion, muscle pain, heat or cold intolerance.)
2. What are the most negative impacts on your daily life that result from your condition and its symptoms? (Examples may include difficulty with specific activities, such as sleeping through the night.)
1. How does the condition affect your daily life on the best days and worst days?
2. What changes have you had to make in your life because of your condition?

Topic 2: Patients’ Perspectives on Current Approaches To Treating CFS and ME

1. What treatments are you currently using to help treat your condition or its symptoms? (Examples may include FDA-approved medicines, over-the- counter products, and other therapies, including non-drug therapies such as activity limitations.)
1. What specific symptoms do your treatments address?
2. How has your treatment regimen changed over time and why?
2. How well does your current treatment regimen treat the most significant symptoms of your disease?
1. Have these treatments improved your daily life (for example, improving your ability to do specific activities)? Please explain.
2. How well have these treatments worked for you as your condition has changed over time?
3. What are the most significant downsides of these treatments (for example, specific side effects)?]

Movie Monday 4/22

Happy Earth Day!

Whew - long and tiring week last week! My husband was out of town all week, so I was on my own. Plus, my mom came to visit, and she and I went to one of my book groups Wednesday night - all fun, of course, but tiring.

So, I watched some movies myself last week, as well as some with my son, Craig:

For myself, I picked movies I thought my husband wouldn't be interested in. I watched Life in Flight during the week - couldn't stay up late enough to finish it, but I split it into two days (pretty pathetic for a 77-minute movie!). The story is set in NYC, about an architect/husband/father who is unhappy with his life. His wife is eager for him to climb the corporate ladder and merge his company with a big firm so she can continue to host fancy parties and go on 2-week island vacations with her friends. The architect husband feels like he will be selling out if he signs this big contract. His feelings are cemented when he meets a beautiful designer who shares his artistic leanings. It's a quiet movie - no big action or suspense - about being true to yourself, figuring out what's important in life, and making difficult choices. It's kind of sad but not depressing and with a glimmer of hope.

Friday night, I watched Main Street, another quiet, thoughtful film. This one is packed with an all-star cast, which is funny because I had never heard of it before, and it looks like it got very little press or circulation when it came out. It's about a small town in North Carolina that is slowly dying, in the way of many small American towns, with its Main Street full of shuttered businesses. Ellen Burstyn plays an old woman who grew up there and is trying to hang onto her old home, in the face of mounting bills and declining income. Colin Firth plays a Texas businessman (yes, Firth has a Texas accent in this movie - very strange) with a proposition to bring the town back to life and put its citizens back to work. He rents a warehouse from Burstyn's character, and Patricia Clarkson plays her daughter, who is wary of the stranger's motives. Other town residents fill out the cast, including Orlando Bloom (whom I didn't recognize until the credits!) as a police officer. This is another quiet movie without much action, about change and fear of change. It was a bit slow for me but enjoyable.

I let 15-year old Craig pick out a Redbox movie Friday night, and he chose Pitch Perfect - again! We both loved it just as much the second time. It is such a feel-good movie with great music and plenty of humor. I love Fat Amy!

Saturday night, with my husband back home, the three of us watched Little Miss Sunshine. Ken and I had seen it before, but it was Craig's first time. If you somehow missed this gem of a movie, you have to see it! It's about family - a very dysfunctional family that will make yours look perfectly normal! - and life, with all of its ups and downs. Dad is trying to make a living as a motivational speaker with his very own 9-step program. Grandpa lives with the family and does heroin and coke behind closed doors. The teen son admires Nietzsche and has taken a vow of silence until he meets his goal of going to the Air Force Academy. Mom is trying to hold the family together, sneaking cigarettes and serving lots of take-out fried chicken for dinner. Her brother is living with them because he tried to commit suicide. And the young daughter, Olive, played fabulously by Abigail Breslin, dreams of being a beauty queen. She's a bit overweight (probably all that fried chicken) but diligently practices her dance routine (that grandpa choreographed) in the basement. Then, the unthinkable happens - Olive qualifies for the Little Miss Sunshine pageant in California, so the family sets off on a road trip. At one point, Craig said, "Mom, you said this was funny but it's sad." And, yes, it does have its sad moments - this family has some serious problems - but it is also very, very funny, especially if you can appreciate a bit of dark humor. Just watching them push-start their old VW van after the clutch breaks cracks me up every time (see cover photo). And the closing scene when Olive does her dance routine at the pageant is hilarious! I love movies that are about real life - joys and sorrows, tears and laughs - and this one is great.

Have you seen any good movies lately?

(If you are interested in what we've been reading, check out the Monday post at my book blog).

How My Son Went From Couchbound to College

I guess that post title is a bit misleading because the honest truth is that we really don't know exactly what caused such a miraculous improvement in our son that allowed him to start college with his peers last August. Desperate for some way to help him and allow him to start college on time, after 18 months of near-total incapacitation, we tried dozens of new treatments that summer, so we aren't 100% sure which of them is really responsible for his dramatic improvement ... but we have some educated guesses.

A quick bit of background for those who are new to my blog: My son's history with both ME/CFS and Lyme disease is a long and complicated one. He first got Lyme in 3rd grade but seemed to recover fully from that and was very healthy in 4th grade. In 5th grade, he suddenly became severely ill and was diagnosed with ME/CFS (which I'd had for 2 years). He missed 60 days of school in 5th grade and only attended part-time in 6th grade, with home tutoring. Treatment with Florinef for Orthostatic Intolerance dramatically improved his condition at the end of 6th grade, and he went back to school full-time, re-joined the band, and was even able to play soccer again.

At the end of 7th grade, he got Lyme again. This time, he did not return to his normal baseline after treatment. He remained more fatigued, though treating with more doxycycline didn't seem to have any effect. Over the next 4 years, his condition worsened very gradually. He was still attending school but missed 25-35 days a year, with ever-worsening fatigue and cognitive dysfunction (and all the other typical ME/CFS symptoms). Finally, some strange symptoms alerted to the fact that he had another tick-borne infection, bartonella. A Lyme specialist diagnosed him with Lyme, bartonella, and babesia (all tick infections); our best guess is that he had these other infections all along but they were never tested for or treated back in 7th grade.

Treating tick infections that have been present for that long is a tricky business, and most people get worse (due to a herx reaction) before they get better. Our son got even worse than most after so long, with an 18-month long severe herx reaction that left him mostly incapacitated. He spent most of his junior and senior years of high school on our couch, struggling to catch up on missed work, but with the help of home tutoring (and many fierce battles with the school for accommodations), he managed to graduate on time. Although he'd had some gradual improvement, he still had a difficult summer (and only finished his high school work the day before college started!), but at the end of August, he improved dramatically.

Yeah, that was the brief version! So what changed last summer that allowed him to start college on time and even live on campus? Here are the things we tried and our best guesses as to their effectiveness:

Beta Blockers - We have no doubt that starting him on low-dose, extended-release beta blockers at the end of August played the greatest role in getting him back on his feet (quite literally). He felt an immediate improvement and is now able to walk all over campus without crashing the next day and has even joined the Ultimate Frisbee team. He still takes Florinef for OI (we tried reducing the dose and found he still needed it), but adding the beta blockers resulted in a significant improvement.

Increase Imunovir/inosine - He started inosine last spring (something I have had good success with, too), but it was last summer that I began very slowly increasing his dose. He now takes 4 pills a day - which is still lower than what is recommended - and I think inosine has helped to normalize his immune system somewhat so that he can better fight those infections. I've also noticed that virally-induced crashes have become quite rare for him (and for me) since inosine. Note that we started with prescription Imunovir (not available in the U.S.) and later switched to generic inosine, which worked the same for us (but is far cheaper), and that the dosing is quite complicated and must constantly change. It's all explained in that post on Imunovir/inosine.

New Supplements - This one is more of a guess, but we changed many of his supplements last summer, and I do think that has helped. We consulted with a biochemist/registered dietician who advised us on supplements based on his history, symptoms, genetics, and circumstances. I think that the most significant effect probably came from those supplements aimed at improving his methylation process (something I had started on my own before) to allow his body to better process both the medications he was taking for tick infections, as well as the toxins (i.e. dead bugs) released by the treatments. I think this is a very individual thing--choosing appropriate supplements based on symptoms and history--and we relied on the advice of the dietician/biochemist. In some cases, he was already taking certain supplements (like a multi-vitamin, alpha lipoic acid, and others), but the biochemist recommended a specific brand that she felt would be better absorbed and/or more effective. All of this has been very expensive, and we are not entirely sure which have helped and which are a waste of money. We've been afraid to change anything since he's been doing so well!

Eliminate/Reduce Artificial Dyes -  I really have no idea if or how much this helped. The dietician/biochemist said that artificial coloring can be toxic to many people, especially those with chronic illness. He was ingesting a lot of it because he drank 2-3 liters of Gatorade a day. The salt and fluids helped tremendously with his OI, but she was concerned that the artificial dyes were detrimental. We switched from Gatorade to Vitalyte, a more natural electrolyte drink with only natural colors (and not much of that). I have no idea if it helped or not, but the Vitalyte is actually less expensive than Gatorade anyway, and both of our boys like it. I think it has a lot less sugar in it, too. Later, when we realized that sugar was a big problem for him due to yeast overgrowth, we switched again to GU Brew tablets.

Trial of Gluten-Free/Dairy-Free Diet - Again, I have no idea if this helped or not. The dietician/biochemist suggested he try a restricted diet. She did not suspect food intolerances but said that people with ME/CFS just have trouble digesting gluten and casein (a protein in dairy), and that these substances can increase fatigue and other symptoms because they block one of the methylation pathways in the body. Our son was NOT happy about such a restricted diet, but he was a good sport and went along with it. I joined in for moral support, and he and I ate strictly gluten-free and dairy-free (I was already dairy-free) for 7 weeks. His improvements began several weeks after starting the restricted diet and he didn't notice any improvements in GI issues, so after 7 weeks, he added dairy back in first and then added gluten back a couple of weeks later. Interestingly, he did notice some GI issues worsen when he added dairy back, so on his own, he decided to limit low-fat dairy (it is probably a lactose intolerance since higher-fat dairy products like ice cream and full-fat cheese don't bother him much). That was 6 months ago, and he is still doing well, so I don't think the gluten and casein were a major issue for him...BUT it is possible that eliminating them for a while helped his body to recover and improved his ability to process toxins by temporarily removing that methylation block. Who knows? Note that we later both adopted a modified Paleo diet, which does help.

I think those were the major changes we made. Once he began to improve, there was a cascade of positive effects that built on each other. As a result of his improvement, he was finally able to gradually increase his dose of antibiotics to treat Lyme to a full dose (for a long time, he couldn't tolerate more than 1 pill every 3 days!), so we are finally seeing some progress in his Lyme/bartonella/babesia treatment. I think this is a critical point to understand: when underlying infections are present (Lyme, other tick infections or reactivated viruses like CMV, enteroviruses, EBV, HHV-6), as they are in many people with ME/CFS, you can't improve until you treat those infections, and the immune dysfunction makes it worse. It is a vicious cycle, and you have to address it all  - treat immune dysfunction and underlying infections.

The beta blockers allowed him to exercise again, and he gradually built his stamina up as a result--this is something I have seen, too. Being able to exercise without crashing allows you to build muscle and improve cardiovascular functioning, which in turn helps to improve your overall physical condition and well-being, allowing you to do even more. He slimmed WAY down as a result and lost the bloated look he'd had. He now walks all over campus every day, plays Ultimate Frisbee with his friends (he's not yet in good enough condition to play in their tournaments, but he practices with the team and is gradually building stamina), and is taking 3 classes each semester. He lives on campus in a single room and stays up late with his friends like any other college kid (though he can go to bed early when he needs to). To our astonishment, he missed only 3 days of classes fall semester and has so far missed only 1 day in the spring semester (the result of 6 straight hours of snowboarding!).

It all still feels like a miracle to us, and we are grateful every single day. I wanted to share with you not only the specifics of what we think helped but also the hope. I don't know whether he (or I) will ever be 100% well, but improvement is possible. He is so happy to be living among his friends, going to school, and resuming a somewhat normal-ish life.

Movie Monday 4/15

Another busy week here but kind of a strange weekend. My husband went to visit his father in Oklahoma, so we missed having him around this weekend (and missed being able to go with him). Normally, all four of us go out there for spring break, but our sons had different spring breaks this year, so a week-long trip was impossible.

We did watch a couple of movies, but we also did something extraordinary this week. Drumroll, please....

We saw a movie in the theater! (gasp!) Unfortunately, this has become a very rare experience for us - it's just easier to watch a DVD at home, lying on the couch, with a pause button nearby for bathroom and snack breaks. The last time we went to the theater was to see the last Harry Potter movie. We had a rainy Friday here, and since my husband would be gone for the rest of the weekend, I thought it would be fun to go out to the movies for a change.

We went to see Oz the Great and Powerful with our 15-year old son (we saw the regular one, not the 3-D version). It was very good, and we all enjoyed it - an excellent choice for viewing on the big screen. We also enjoyed the previews - every single one looked like something we'd like! The movie was a bit different than I expected. I knew it was based on L. Frank Baum's original books, not on the Hollywood movie, but I was pleased to see many visual homages to the original Wizard of Oz movie. So, this is something of a prequel to The Wizard of Oz, the story of how the wizard came to Oz from Kansas. James Franco plays the phony wizard who gets caught in a power struggle between three witch sisters. It was bright and vivid and exciting and lots of fun!

Saturday night, Craig was invited out to dinner with a friend's family, so I put all the dinner ingredients back in the fridge, got take-out fajitas, and watched a girl DVD by myself! Ah....blissful solitude! I watched I Don't Know How She Does It starring Sarah Jessica Parker as Kate Reddy, a working mom trying to juggle everything in her life, and it was better than I expected. I read the book many years ago and enjoyed it, but sometimes book adaptations are just so-so. I don't remember all the details about the book, but I do recall it having a snarky kind of humor that was missing in the movie (the novel and the humor was British but the film was set in the US). The movie had some funny moments, but with more of a heartfelt, genuine vibe. Greg Kinnear plays Kate's harried husband, and Pierce Brosnan plays a work colleague of Kate's. Overall, I liked it - a nice, enjoyable bit of escapism that reminds you of what is important in life. For me, it brought back lots of memories of my Previous Life as a harried working mom who constantly traveled, and I decided I am happy living life in the slow lane now, in spite of CFS.

Have you seen any good movies lately?

ME/CFS Charity Volleyball Fundraiser

Want an opportunity to help ME/CFS research from your couch or bed?

This lovely young woman from George Washington University whose aunt has CFS has set up a charity volleyball tournament to raise money for ME/CFS research. Check out her website to read all the details and hear from an adorable little boy who wants you to help his Grammy.

You can donate directly from the website to help fund this great charity event up until April 21, the date of the tournament. I just did!

Movie Monday 4/8 (on Tuesday)

I really tried to get to this post yesterday, but severe allergies have me down this week. We went from snow 2 weeks ago and temperatures in the 20's one morning last week to highs in the 80's today! The pollen is going crazy and so are my allergies. Hopefully, tomorrow will be a better day.

We did enjoy a couple of movies last week:

Friday night, I chose a movie I thought Craig would like (poor boy is stuck at home alone with his parents now that his brother is off at college!), so we watched Skyfall, the latest James Bond movie starring Daniel Craig. In the first 5 minutes of the movie, there is a car chase, a motorcycle chase, a shoot-out, and a fist fight on top of a moving train...and that is before the opening credits. This one starts with a bang! My husband and son love all the action. I could take it or leave it, but the intriguing plot pulled me in pretty quickly. This time, it seems that some unknown villain is targeting MI6 itself, and Bond must work together with M to find out who it is and stop him. We all enjoyed the movie, and I especially liked that we got a bit of backstory from Bond's childhood in this one.

Saturday night, with Craig at a bonfire party, then sleeping at a friend's house, Ken and I had a rare night to ourselves! We had a lovely dinner at our favorite Thai restaurant where we ran into two sets of old friends, then came home to watch The Sessions, in which Helen Hunt plays a sex surrogate hired to help a 38-year old polio victim (and virgin) who lives much of his life in an iron lung. At first glance, you might think this movie is just a bit of tawdry fluff, but it is warm and heartfelt, as evidenced by its many awards at film festivals. The R-rating warns of, among other things, frank talk (I just found that funny), and there is plenty of that and nudity, too. But this is no cheap sex movie. Nor is it maudlin or depressing, despite the main character's dire circumstances. It is based on a true story and is full of emotional depth; it is funny and sweet and honest. It is a bit sad at times, too, but I found its tone mostly positive and hopeful, an encouraging perspective on what you can accomplish, no matter how severe your physical limitations.

Have you seen any good movies lately?

Last Day to Register for Attending OR VIEWING FDA Meeting

Oops - I almost missed this. If you want to watch the webcast of the upcoming FDA meeting from home, you need to register online by midnight TONIGHT!

Use this link to register for the FDA ME/CFS Drug Development Workshop on April 25 - 26 - for either attending in person or watching the webcast. It only takes a moment - I just signed up for the webcast.

Two Ways to Help ME/CFS Treatment Move Forward

On April 25-26, the U.S. Food & Drug Administration (FDA) will be holding its first-ever FDA Workshop on Drug Development for Chronic Fatigue Syndrome (CFS) and Myalgic Enchephalomyelitis (ME) in Bethesda, Maryland. This is our big opportunity to teach the FDA all about the severity and effects of ME/CFS and our urgent need for effective treatments (this FDA link keeps going out. I can't figure out why. If the link doesn't work for you, try the one in this OccupyCFS post - that's the one I used, too, but for some reason it works there and doesn't here).

The meeting is open to the public, though of course, many ME/CFS patients are too sick to attend. However, even if you are bedridden, there are two ways that you can help in this momentous event. Two different surveys have been launched to collect patient data, and the more patients that respond, the more impact we can have in convincing the FDA that there is an urgent need for medications designed specifically to target the unique complexities of ME/CFS.

The CFIDS Association is conducting a survey based on the questions FDA posed in the Federal Register notice for the Workshop. Responses to the survey will be collated and presented at the workshop. It consists of open-ended questions (full sentences not required - brief responses or bullet points are fine) and will take between 30-60 minutes to complete. Follow this link to begin the CFIDS Association survey.

The second survey has been designed by Dr. Lily Chu and Dr. Leonard Jason, who will be participating in the FDA workshop. Dr. Chu will present the results of this survey to help teach the FDA about ME/CFS from the patients' point of view. This survey is multiple choice with some room for additional comments and should take about 30-40 minutes to complete (mine only took 25 minutes to complete). Responses are needed by April 17 to be included in the FDA meeting, but the survey will remain open until May 10, and all responses included in a report. Follow this link to begin the Chu/Jason survey.

If you can manage both surveys, great - they are different surveys and they can use all the patient input they can get and the more responses they get, the more meaningful the data will be. If you can only manage one, just choose one  - your participation will be helpful either way.

You can also participate directly in the meeting in person or by giving public comment. This blog post from Occupy CFS provides details and links (I also borrowed heavily from another Occupy CFS post for the survey information above since I haven't been feeling well lately - thanks, Jennie!)

This FDA workshop is a big deal, so help out however you can!

P.S. I believe the CFIDS Association survey is open to patients all over the world, not just in the US. Questions on the survey will ask where you're from so that US data can be pulled out, but the more responses, the better! If the FDA gets on board with focusing on ME/CFS, it will help make treatments more available all over the world.

Post-Event Crash

As most of you know, I have generally been better in recent years, thanks mainly to beta blockers and Imunovir. I have more good days and fewer bad days. I can take walks and do some light weight lifting without going past my Anaerobic Threshold. I can even go to the grocery store without crashing the next day (on a good day with all conditions just right!). I have been baking again and cooking more for my family. And I spend far less time lying down than I used to.

But last week, I was reminded that despite all these wonderful gains, I am still held captive by the restrictions inherent in ME/CFS. It was an unpleasant reminder.

We had a very active, exhausting weekend. My dad and his wife were visiting. They are easy guests, but it is still different than being home alone. They were here for my uncle's funeral. He grew up near here (a fact I never knew before!), so the funeral was just a half hour from our house. Saturday was a very long and tiring day: visiting hours at the funeral home from 10 am - 11:30, church service at noon, graveside service at 1:30 pm, and lunch at 2:30 pm. I knew this would be like running a marathon for me, but we were prepared to leave early if we had to and drove separately from my dad.

Miraculously, I made it through the entire day! Just the late lunch alone was a big deal for me, but I packed plenty of snacks and guzzled a 12 oz. V-8 juice (for the sodium) before the church service. I wanted to be there for my family, especially my aunt and cousins, and I felt pretty good, so I hung in there. We finally got home at 4:30 pm, and I went right to bed for a very late nap. I slept soundly until 6 pm and probably could have just slept through the night, but we did have houseguests. It was a very low-key evening - we ordered pizza and watched a DVD - but the damage had been done.

I didn't feel too bad on Sunday - just very tired - so I went ahead with my plans to make a big corned beef dinner for St. Patty's Day. My dad and his wife left early Monday morning, my husband went to work, and the kids to school...and then I collapsed!

Lately, when I do too much and crash, it only lasts a day, so that's what I was expecting - maybe two days since this had been quite a ways over my limits. Each morning, I woke up expecting to feel better...and instead, I felt worse and worse. This was a severe crash - bad aches, sore throat, no energy, total exhaustion. I tried to listen to my body and stay on the couch - thankfully, it was a normal week, with the kids in school and my husband around in the evenings to help out. Finally, by Friday I felt a little better. Not great yet, but well enough to manage the grocery store (and frustrated by my lack of productivity all week), I thought. By Friday night, I felt awful again and woke up on Saturday morning in my worst state yet. My husband was very supportive and made me stay on the couch. Finally, on Sunday - a week later - I began to improve.

This week has been another rough one. I am feeling better, but my husband has been out of town all week, and my older son is home on spring break. Given his own health problems, that means a week filled with doctor's appointments, lab tests, etc. plus I am doing all the stuff my husband usually helps with - getting up at 6 am to drive Craig to school, doing dishes, driving to and from all kid stuff. I've been pushing my limits all week...and have been cranky and exhausted as a result.

So, once again, CFS has put me in my place and reminded me who's boss. I have no regrets - I am glad I was able to manage the funeral for my family's sake (and my own, too). I know that a couple of years ago, I never would have made it to 4 pm and would have felt far worse all day. But it is discouraging to be reminded so starkly that my life is still governed by these arbitrary limits. I can not skip (or apparently, postpone) my afternoon nap. I can not manage an all-day event or social occasion without paying a steep price for days or weeks afterward.

Don't get me wrong - I am grateful for the improvements I have made and for all of the things I can do now. But in the big picture of life, these are small gains - meaningful, yes, but my life is still defined more by what I can't do than what I can do. I would have loved to walk with my friend in her MS walk last week, but 3 miles is way beyond my capabilities. I am dying to take my kids to NYC to see all the sights, but I can only manage a couple of hours at a time before needing to rest. We haven't been to Disney since our big teen boys were ages 5 and 2. I am thrilled to be able to take walks again, but I am limited to 20-30 minutes at a very slow pace, every other day.

I really try to focus on the positive and on what I can do, not what I can't, but these last two weeks have been difficult. On the plus side, we are taking a little mini vacation this weekend, so that is something to look forward to! I am trying to take care of myself today and rest more.

Hope you all have a good, relaxing weekend too!

Movie Monday 3/18

We had a long and tiring weekend. My dad and his wife were visiting, and we spent all day Saturday at my uncle's funeral nearby. Visiting hours in the morning, church service at noon, graveside service at 1:30, and finally, lunch at 2:30. Believe it or not, I managed the whole thing (with the help of snacks in my purse and a big, salty V-8 juice before church). We finally got home at 4:30 and I went right to bed - very late for my nap, but I slept soundly until 6pm. I probably could have just slept all night if we didn't have guests who were waiting for dinner! I was totally useless by that point - limp as a wet noodle - so we ordered pizza and watched a DVD in the recliners (our family room is now ALL recliners - love it!) Surprisingly, I wasn't in too bad of shape on Sunday or today, just very tired (still). So, here's what we watched:

Ken picked out Total Recall from the Redbox. This is a remake of the classic Arnold Schwarzenegger sci-fi action flick from 1990. This new one stars Colin Farrell as Douglas Quaid, a factory worker living in a dystopian future where chemical warfare has made most of the earth uninhabitable, except for the United Federation of Britain and The Colony (Australia). People travel between the two via a super high speed train that travels through the center of the earth along a tunnel. Douglas commutes to UFOB each day for his job working the assembly line for police robots. He loves his wife but is fed up with his dead-end job (you would be, too, in this depressingly bleak world). He gets lured in by an ad for Rekall, a service that implants fake memories in your brain so that you can have whatever past you dream up for yourself. He chooses secret agent, but the process is aborted when it is discovered that he really was a secret agent in his past. Things get confusing from there, as Douglas is pursued by government agents and police, though he still can't remember this past life they claim he had. This is a very fast-paced movie with plenty of action. The females among us thought it was good but a bit too action-y, but the males (my husband son, and father) all loved the chases and fights. I have to admit that seeing a car chase with floating mag cars was something new!  I did enjoy the sci-fi plot, too. Lots of suspense and a pulse-pounding pace kept us all on the edge of our seats.

Have you seen any good movies lately?

Exciting New ME/CFS Research Looks At Infections

I am way behind in reading up on recent ME/CFS research, just like I am behind in everything else these days! So, this update was posted on Phoenix Rising back in February, but I am glad I kept it sitting open on my desktop all this time!

Ian Lipkin, a superstar in the research world of viruses who worked on the XMRV lead, is heading up a new research initiative to try to uncover the cause of ME/CFS. They already have 400 CFS patients enrolled in the study with 400 healthy controls, and that number by double by the end. They are using advanced methods to search for likely pathogen candidates, plus looking for protein and immune abnormalities that could point to previously undiscovered pathogens.

The details are summarized in this excellent article on Phoenix Rising in simple, easy-to-understand terms (there's even a nifty diagram!). Check it out.

So, rejoice! Perhaps by the end of this year we'll have answers to some of the many questions those of us with ME/CFS face - exciting times!!

Movie Monday 3/11

Craig finally went back to school on Friday!!  Hurray! Even better, he didn't crash afterward, worked on make-up work all weekend, and went to school today, too! He seems back to his old self - what a relief for all of us. Of course, we are never all well for long - Jamie came home from college on Sunday with a bad cold. You know how that affects CFS. He went back to campus last night with a pile of extra medications and is trying to take it easy this week.

Well, anyway, Ken and I enjoyed a great movie on Friday night:

We watched The Kids Are All Right, a movie I have wanted to see ever since its theatrical release. It was very good, with a fabulous cast. Julianne Moore and Annette Benning star as a gay couple who have two teenage kids. Benning's character is a doctor who is a bit uptight and controlling. Moore's character is more of a hippie-type who is trying to start a landscaping business. They seem to live a nice, quiet life together, until their son decides he wants to find out who is biological sperm-donor father is. His sister, who is 18, contacts the donor agency, gets a name, and sets up a meeting with him, played by Mark Ruffalo. Things begin to spin out of control from there. Ken and I both enjoyed this drama/comedy - the cast is all excellent, the story is engaging, and there's even a great soundtrack behind it all.

Have you seen any good movies lately?

Movie Monday 3/4

Yet another long week of being mostly housebound with my son, but we are finally seeing signs of improvement. He did perk up a bit, starting on Friday, and had a decent weekend. He was finally able to do a little bit of make-up work for school, and he had a friend over for a few hours on Saturday. The idea was that they would just chill out and play video games, but they went outside for a walk in the woods for a half hour. The poor kid hasn't left the house in almost a month (except for doctors and surgery!) and hadn't seen any friends at all, so it is hard to take it easy when the energy finally comes back - I'm sure you all understand that! We were hoping he'd be back in school today, but he slept until 11 am and is feeling wiped out again. Hopefully, he will get back to at least partial days this week.

So, he and I watched a lot of TV again last week. He is really enjoying old episodes of Roseanne, especially now that David has shown up, played by one of his favorite actors from The Big Bang Theory. When our college-aged son came home on Sunday for the day, we caught up on 3 episodes of Arrow, an excellent new superhero show. And we watched a couple of movies this weekend:

Friday night, we watched The Bourne Legacy with our son. We all enjoyed it. It picks up where the last Jason Bourne movie ended, with the CIA and the public all in an uproar over the secret program that came to light. Now we find out that there is another super-secret program in danger of being exposed with all the publicity. They try to shut it down, but one of the super-soldiers they've created escapes....and the chase is on. Our son complained that there wasn't enough action in the first half of the movie and too much backstory, but the second half of the movie had plenty of action to satisfy him!  The movie was fast-paced with an intricate, complex plot and plenty of suspense.

Saturday night, Ken and I watched Looper, a thoughtful, in-depth sci-fi story set in the future. It's a time-travel story, so it is somewhat complicated - we had to hit pause at one point and try to figure out what was happening in which year - but that's what I love about time-travel stories! The basic plot is that in the future, it is impossible for criminals to get rid of bodies because everyone is electronically tagged, so there are hired assassins called Loopers who wait 30 years in the past. At a designated time, the  victims are sent back in time and  - bam! - the Looper kills them and disposes of the body. One Looper, played by Joseph Gordon-Levitt, is saving up for his retirement, until the day one of his intended victims turns out to be an older version of himself, played by Bruce Willis. I hadn't wanted to watch this movie because of the violence, but it turned out to be a very good, thought-provoking movie, incorporating all of my favorite time-travel themes.

Have you seen any good movies lately?