Speak Up About ME

INVISIBLE NO MORE!

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 on May 11, 2011Request your testimony time slot now!  More details on the FAQ page here.

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 Matthew'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:

The young patients and their families can contact me, Denise Lopez-Majano, mother of two teens with ME/CFS who are SICK of being sick and tired. To use the contact form, click here or send email to SpeakUpAboutME [at] gmail [dot] com.