Taking Care of Me

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

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

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

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

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

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

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

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

Accepting the Gorilla in Your House

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

By Helen Scott-Jackson

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

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

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

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

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

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

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

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

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

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

Movie Tuesday 7/26

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

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

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

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

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

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

Have you seen any good movies lately?

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

Movie Monday 7/18

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

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

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

Have you seen any good movies lately?

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

Summertime and the Living is...Crazy?

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

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

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

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

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

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

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

Rejected!

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

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

Specifically, they said:

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

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

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

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

So, more waiting now.

Movie Monday 7/11

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

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

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

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

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

The Afternoon Slump

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

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

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

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

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

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

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

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

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

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

Back From Vacation!!

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

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

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

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

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

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

Enjoy the holiday weekend - I missed you guys!

Movie Monday 6/6

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

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

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

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

Have you seen any good movies lately?

Science Requests Retraction of Original XMRV Paper

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

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

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

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

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

Movie Tuesday 5/31

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

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

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

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

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

Have you seen any good movies lately?

The Latest XMRV Study

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

So, here's the scoop, in brief:

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

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

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

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

A friend passed this request along to me:

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

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

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

Movie Monday 5/23

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

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

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

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

Have you seen any good movies lately?

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

CFSAC Testimony From Two Mothers

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

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

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

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

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

Listen to Radio Show on ME/CFS

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

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

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

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

Radio Show on ME/CFS Tonight

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

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

You can listen to the show live at this link.

More CFSAC Testimony From Another Teen

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

CFSAC Testimony from A Teen with ME/CFS

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

CFSAC Meeting May 11

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

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

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

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

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

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

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

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

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

Watch CFSAC Meeting Live Today and Tomorrow

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

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

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

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

Raising Awareness of ME/CFS Through Music

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

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

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

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

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

Finding Joy in Every Day

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

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

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

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

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

What brings you joy?

Post-Vacation Crash

Crashed today.

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

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

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

Back, Safe, Home Again

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

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

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

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

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

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

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

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

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

Movie Monday 4/25

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

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

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

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

Have you seen any good movies lately?

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

New Population Study on Kids/Teens with ME/CFS

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

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

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

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

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

My testimony for CFSAC

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Movie Monday 4/18

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

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

We did enjoy some movies this weekend:

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

Have you seen any good movies lately?