Speak Up About ME, INVISIBLE NO MORE! Young People with ME/CFS

[Guest guest]

It is time to YANK (not tug) the nation's heartstrings.

Young People with ME/CFS -- JOIN US in Speaking Up About ME!

How will we yank people's heartstrings?

Through the attendance of a record number of young people and their families at

the 2011 Chronic Fatigue Syndrome Advisory Committee meeting (CFSAC) in

Washington D.C. Date coming soon!

Historically, few young people have attended this event. Speak Up About ME will

change that, as those who became sick as children or in their teens proclaim

themselves to be INVISIBLE NO MORE!

Parents, guardians, and representatives from organizations supporting this

project will accompany the young patients who go to Washington.

The project will also represent young patients who cannot attend due to health,

finances or the distance of the travel by delivering their testimonials via

video, telephone, e-mails and letters.

Speak Up About ME T-Shirts, Young Patient Luncheon

All of the young participants will wear identical shirts, emblazoned with the

project title, Speak Up About ME, to be purchased through Zazzle.

In addition, each shirt will be customized with a slogan that shows how much of

the patient's life has already been ruined by the illness. (For example, my son

's shirt will announce " sick 6 of 18 years. " )

As well as attending the meeting, young people who come to Washington will get

together for lunch. This will be a great opportunity to meet and bond with other

patients.

Congressional Visit & Thank You for Remembering ME " Trading Cards

In addition, as many of the group as possible will visit their congressmen/women

and senators, taking taxis to minimize loss of energy. The cost of the cards,

taxis and lunch is being covered by donors.

They will also hand out cards to their elected representatives. 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.

Through these actions, Speak Up About ME will highlight the faces of young

people with ME/CFS and encourage more funding for biomedical ME/CFS research.

Contact information:

http://www.speakupaboutme.org/