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Young People with CFS: Speak Up About ME!

Posted Mar 22 2011 3:53pm
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 !
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