Monday, May 10, 2010

CFSAC Meeting Today in Washington, DC

Happy (belated) Mother's Day to all you moms out there! 

No Movie Monday today because we spent the weekend in Connecticut at my mom's house with my sister and her family.  Ten of us in one house for 3 days!  It was, of course, completely exhausting - constant noise and activity - but it was also very nice to see everyone and spend time with my family.  I especially enjoyed playing with my little niece and nephew.  We took a walk on the beach (where my 4-year old nephew went absolutely crazy catching tiny crabs with Jamie and Craig), ate one huge meal after another, and played lots of games.  It was fun teaching my niece to play jacks and pick-up sticks These are two of Craig's favorites - he's been quite impressed with my jacks skills which are surprisingly intact after a 35-year hiatus!  (My mom is pretty amazing at jacks, too!) And Jamie totally whipped me 8 games out of 9 in backgammon.  I'm wiped out today, but it was a good weekend.

I received lots of nice gifts for Mother's Day from Ken and the boys (and from my mom!), but the highlight was a gorgeous necklace and earrings from fellow-blogger and CFS-mom Lori's Waterstone Jewelry.  Lori is so talented!  Her jewelry is beautiful, and I can't wait to wear my new gifts.

On to more serious business...Today is the CFSAC meeting in Washington, DC, with the new committee members.  The meeting is being broadcast live today from 8:30 - 4 pm Eastern time.  Here's the link to watch (second one down).  A local mom with two sons who have severely disabling CFS asked if I wanted to go with her to attend the meeting, but I knew the weekend would do me in.  Instead, I submitted written testimony that I hope will be read during the meeting or at least included in the minutes.  Here's what I submitted:

"My name is Sue Jackson, and I have had CFS since March 2002.  Both of my sons, ages 12 and 15, have it also.  I have always wanted to come to a CFSAC meeting, but I need to nap every day, and I know that attending would cause a relapse.

Although my life has been dramatically changed because of CFS and I am severely limited in what I can do, I want to primarily focus on my sons today because pediatric 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 CFS just in my local area, and I’m sure there are many more I haven’t met or who haven’t been properly diagnosed.  I write a blog about living with CFS, and I receive e-mails every week from parents whose kids are completely disabled by CFS.

My older son, Jamie, started showing symptoms of CFS when he was nine years old and in 3rd grade.  The symptoms came and went for a couple of years, then become suddenly much worse when he was eleven.  Jamie missed 60 days of 5th grade 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 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).

My younger son, Craig, began showing CFS symptoms when he was just six years old, in 1st 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 CFS experts, we were fairly certain he also had 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 3rd grade, 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 explained Orthostatic Intolerance (OI, a condition of low blood volume and low blood pressure) 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, CFS is still a significant part of daily life for them.  They go to bed at 8 pm every night, even the 15-year old.  They have to be careful not to overdo and will experience a severe flare-up of CFS symptoms if they do too much.  A sleep-over at a friend’s house can result in several days of being too sick to get up off the couch.  They each still miss between 25 and 35 days of school each year due to CFS flare-ups.  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. 

My husband and I worry about their futures.  Our older son will be college-age in a couple of years, 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?  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 CFS and unable to attend school at all.

After living a perfectly healthy life for 37 years, I got 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 CFS, are not uncommon, as the 2006 New Jersey CFS Association study showed.

We need more research into the biological basis for CFS and into effective treatments.  We need more education for doctors so that the estimated 80% of patients with undiagnosed CFS can finally get some answers.  Although all of the major advances in CFS research so far have come from private funding, 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 CFS and can’t find a knowledgeable doctor or an effective treatment."


Unknown said...

Great letter. Your advocacy is going to pay off!

(I'm having brain fog today so am short worded)

Lori P said...

Great post Sue. I'm glad you like your gifts!

Anonymous said...

Gosh, Sue, your letter to the committee was heart-wrenching. Thank you for sharing it. And I know I have said this to you before, but thank you so much for your tireless researching and reporting on all things CFIDS. I'm still really glad for your family that you have a doctor. After 12+ years with this dd, I still do not here in San Diego. I go it alone...
I tried to get in to Dr. Peterson's clinic in Nevada to no avail. Started that effort back in '06.

P.S. My Mother's Day was awesome with my two teen daughters!!


Dusty Bogwrangler said...

Beautifully written and very powerful. You will surely make some impact.

Never That Easy said...

Excellent letter - I hope it gets read, and HEARD!

PS - Happy belated Mother's Day!

Toni said...

Powerful, persuasive letter, Sue. I sure hope they read it.

Anonymous said...

Excellent letter. Thanks from me as well for your advocacy.


Renee said...

A very powerful letter Sue. I pray it will be heard and used to bring about a positive change.

Annie said...

Thank you for this letter Sue! I hope it can bring about change for us, and even more so for the children affected by this horrible illness!

greenwords said...

Really enjoyed reading your testimony, Sue, thanks for sharing it with us. I can't imagine what it must be like knowing your children are ill with this condition, it breaks my heart that kids get it too. So many families tread such a hard path. Hoping for more good research soon.

cinderkeys said...

It's nice to know that some schools are willing to accommodate (at least after a lot of yelling). Here's hoping that becomes the rule and no the exception. Without the yelling.

Anonymous said...

Powerful testimony Sue, and also would be great for awareness raising for International ME Awareness Day tomorrow! I hope your letter gets due attention at the committee.

My sister became ill when she was 11 and I "waited" til i was 22, but i wonder if we actually got it at the same time and my body just responded differently - i certainly had periods where i was not quite right, looking back. You are right, so much research needed and so much time wasted already.