Speak Up About ME!



We appreciate your patience as we learn our way around blogging. (Thank you)

Spread the word!

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

Young People with ME/CFS –

JOIN US in Speak Up About ME, to be

Invisible No More!

Washington DC this spring (2012)

How do we yank people’s heartstrings?

With the participation of young people and their families at the Chronic Fatigue Syndrome Advisory Committee meetings (CFSAC) in Washington D.C.  Historically, few young people with ME/CFS have attended the CFSAC meetings.

Speak Up About ME changes that, as young people with ME/CFS proclaim themselves to be INVISIBLE NO MORE!

Parents, guardians, and representatives from organizations supporting Speak Up About ME, accompany the young patients to the Speak Up About ME events in Washington.

Speak Up About ME also represents young patients who cannot attend due to health, finances or distance, by delivering their testimony via DVD, telephone, e-mails and letters.

Speak Up About ME works to empower young people and families, friends and others affected by ME/CFS to advocate for ourselves and others.

  • WHO? – Young People with ME/CFS and their families.
  • WHAT? – Speak Up About ME – Invisible No More!
  • WHERE? – Washington DC, Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting.
  • WHY? – To raise awareness about ME/CFS, that it affects people of all ages, to provide public comment to the CFSAC committee, to be Invisible No More!
  • WHEN? Speak Up About ME will take place again at the spring 2012 CFSAC meeting!

Why should I participate?

Physical presence and providing your public comment in person at the CFSAC has great impact and is empowering. Providing your public comment via DVD is also very powerful. Public comment can be provided by phone and in writing by those who are too sick to attend in person. (Contact Speak Up About ME at gmail dot com  (all one word, no spaces) for more information.)

If you are so sick, why are you taking part in Speak Up About ME?

Advocacy and empowerment– we don’t want anyone else to go through what we are going through. By raising awareness, we work to ensure that no one else has to go through this.  This is a personal sacrifice and it takes weeks for us to return to our previous level of functioning.  And yet, participation is empowering, despite the toll it takes on us.

What can I tell my school about the event?

Speak Up About ME participants are part of government in action. Participating in the CFSAC and/or meeting with Congressional representatives on Capitol Hill are integrated learning experiences (advocacy, public speaking, science, geography, social studies).


Speak Up About ME welcomes everyone to participate.

We especially welcome early onset patients (as well as their families, friends, caregivers, and advocates).

We gladly welcome mentors, volunteers, supporters, contributors.

JOIN US to Speak Up About ME, and Invisible No More!


Contact us at Speak Up About ME at gmail dot com (all one word, no spaces)     


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