Tuesday, March 22, 2011

Young People with CFS: Speak Up About ME!

If you or your children became ill with ME/CFS before the age of 21, this is for you!
(If not, you can still help...)

Denise, a good friend of mine who has two teen sons with severe ME/CFS, has come up with an amazing idea to build awareness of the impact of ME/CFS on kids, teens, and young adults.  Her awareness project now has several sponsors and is being talked about all over the internet!

The CFS Advisory Committee (CFSAC) of the U.S. Department of Health and Human Services finally announced its next meeting will be on May 10-11.  Speak Up About ME - Invisible No More! will take place during the second day of the meeting, on Wednesday, May 11.  Here's how you can help:
  • If you or your kids became ill before age 21, e-mail Denise with the following information: Name of patient    Age at onset of ME/CFS     Age at diagnosis    Current age (as of 5/11).  With your permission, she will include your information in her own testimony at the meeting.
  • If you are able to, plan to come to the meeting in Washington, DC, on May 11 to give testimony in person about the impact of ME/CFS on your life or your child's life.  The young people present will attend the meeting, get together for lunch, and, if able, visit their congressional representatives.  If you want to attend the meeting in person, send an e-mail to the CFSAC as soon as possible to tell them you want to give testimony so they can reserve a spot for you.  In-person spots fill up early.
  • If you can't attend the meeting in person, please submit written testimony.  Your 5-minute testimony can be phoned in, read by someone at the meeting, or you can attend via video conferencing.  Again, you must e-mail the CFSAC to notify them that you intend to give testimony, in whatever form, so they can reserve time for you.
  • Whether you can attend in person or not, you can order a t-shirt!  MCWPA Young People T-Shirt for CFSACMCWPA Young People T-Shirt for CFSACThe young participants will wear identical shirts, emblazoned with the project title, Speak Up About ME, to be purchased through Zazzle (MCWPA Young People t-shirt for CFSAC).  Each shirt will be customized with a slogan that shows how much of the patient's life has already been spent ill (For example, my son Jamie's shirt will announce "sick 6 of 16 years").
  • Help publicize this awareness project through your own blog or Facebook page (e-mail Denise for a ready-made PR announcement or feel free to link to this post). 
  • Donate to this project to help defray the costs. 
  • Ask your doctor(s) to help spread the word to their other young CFS patients (you can print information from the website to take to your doctors). 
  • Visit the Speak Up About ME, Invisible No More! website for more information.
This event is being supported by a coalition of ME/CFS organizations including P.A.N.D.O.R.A., the Rocky Mountain CFS and FM Association, the Vermont CFIDS Association, the ME-CFS Worldwide Patient Alliance, Phoenix Rising, CFS Solutions of West MI, CFOG (Chronic Fatigue Syndrome and Fibromyalgia Organization of Georgia) of Georgia and Facebook's cause-project page.  

Some of the sponsors are even going to cover the costs of the young people's lunch, taxi rides to visit Congressional representatives, and individualized cards for young people to hand out. These will resemble trading cards, with the young person’s name and photo on the front, along with the phrase "Thank You for Remembering ME." ME, of course, will refer not only to the patient but to Myalgic Encephalomyelitis. The back of the card will have bullet points about ME/CFS, including its negative economic impact.  We are hoping that this event will also attract media attention.

Isn't this exciting?  Please help spread the word and participate however you are able to!  My entire family (my husband and I and our two sons) will be attending the May 11 CFSAC meeting in Washington, DC.  I already e-mailed to ask for testimony time for all of us. I would love to finally meet some of you in person!

Spread the word about Speak Up for ME - Invisible No More!


  1. dd got a virus age 13 1/2, diagnonsed at age 15 - nearly age 18
    sucks the life out of the teen years,
    But we are learning to live well with it & enjoy the good days.
    Sure makes you look at life differently.

    Love Leanne

  2. Leanne -

    Yes, you are right. It sure does. Can you send your daughter's info to Denise to include in her testimony?

    Maybe we can finally get some attention on our kids' challenges.

    Thanks -


  3. Thank you Sue for your involvement and support. It is so important that our young patients are heard from. I didn't get sick until my early 30s...I was one of the lucky ones to have been able to have kids before I got sick. Just wish I could have been there more for them growing up :(

    Can't wait to meet you at the meeting. Let's fill the room!!!


  4. Hard to say what the etiology is for my son. Fatigue hit BIG time in Fall of 6th grade after a viral illness in August, but in retrospect we saw shorter episodes, severely needing an extra couple of hours sleep, with increasing frequency as he proceeded through 4th and 5th grades. He's been on full homebound or partial in-school/partial homebound since then and he's a junior in high school now. Took a couple of years to get the POTS & NMH diagnoses as we bounced from Dr to Dr. This is a devastating disease! Not just hitting their energy, but also their brain. He's highly gifted intellectually and a talented artist. Yet, we are trying to figure out if he'll be able to mange enough courses next year to graduate on time, and what he might be able to cope with for college.

  5. It definitely is me, and I will send my info to Denise in the hopes of helping! Thanks for pointing this out to me Sue!

    Hope all is well <3

  6. Thanks for sharing your story, Deborah. Unfortunately, it's a common one. If you feel comfortable sharing a few details, please e-mail Denise using the link I provided - we're trying to get as big a list of kids/teens/ YA as we can to show the committee there are far more young people affected by ME/CFS than they realize!


  7. Thanks for providing great resources and putting people in touch. You rock, Sue!

  8. I'll send an e-mail right now, since I was 15 when I got sick, and can definitely give some written testimony about that. Thanks for the heads up, Sue