Be Invisible No More! Speak Up About ME Goes to Washington

February 23, 2012

Posted by Cort Johnson

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 wants 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 going to 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?

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 participants are part of government in action.


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, donors.

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

Some 2011 Speak Up About ME participants


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

Here are links to some of the public comment presented in May and November 2011 at the CFSAC:

Information for contributors:

Your contribution(s) help defray costs such as lunches for Speak Up About ME young participants, taxis to/from Capitol Hill, trading cards, posters, T-shirts, printing, snacks, water, etc.

We would very much like to have sufficient funds to help defray lodging expenses for some participants.

Phoenix Rising is accepting earmarked contributions for Speak Up About ME (thank you PR!). By contributing via Phoenix Rising, you can get a tax-deduction.

The (snail) mailing address for Phoenix Rising is (please note there will be an unavoidable delay in processing checks):

Phoenix Rising c/o Cort Johnson

1575 Rockcrest Hills Avenue,

Henderson, NV 89052


This page on Phoenix Rising has a PayPal button on the left side:

This is what the PayPal page looks like after that:

When you have entered your contribution amount (update the amount before entering any other information) and payment information, you get to a page called “Review Your Donation”.

On this page, to the left of the amount you are contributing, is a line that says “Add Special Instructions to the Seller”.

Click on “Add Special Instructions to the Seller” to open a comment box.

In that box type in that the contribution is earmarked for Speak Up About ME (please).

Continue to review your transaction details and finalize your transaction.

On the email receipt from PayPal it will show what was typed (“For Speak Up about ME please”) into the “Add Special Instructions to the Seller” box.

Please contact Phoenix Rising or Speak Up About ME if further clarification is needed.

Welcome and thank you for joining us,


RSVP now to Speak Up About ME at gmail dot com (all one word, no spaces)


– We are in the process of updating the Speak Up About ME website. Please bear with us. -





{ 9 comments… read them below or add one }

tania selth February 23, 2012 at 4:41 pm

I think this is a very good initiative and really hope it gets a lot of support. Thanks Cort for telling us about it.

Cort.. I dont know about the others but the testomony of alexander link isnt working for me (nothing at all comes up when I click the link).


Cort February 23, 2012 at 7:51 pm

I think Denise – who has two teenagers with strong cases of ME/CFS – has a great thing going. I hope she gets alot of support :).


Elizabeth Fall February 24, 2012 at 9:54 am

Hey everyone! We are trying to help Speak Up about ME to have as many younger people testify or go to Washington D.C. this May. We have made a website and have a lot of young people that follow us. We are trying to help. We linked up to the Speak Up About ME page .

We are asking people to take the ten dollar Pay It Forward Pledge For ME. The money goes directly to Pandora and Phoenix Rising through the link for Speak Up About Me.

We want everyone to join together and help put a face to the voices we heard at the CFSAC meeting. If you are sick..please send a younger friend to Washington in your place. Get your family and friends involved and educate people who have no clue what ME/CFS is.

The website and twitter campaign are being run by myself, Lizzie Fall and another teenager, Sarah Whitestone who is ill with ME/CFS. Pay It Forward For ME!

Here’s the information:


Cort February 25, 2012 at 11:06 am

Thanks Lizzie. Washington DC is where the big bucks and if CFS is ever going to get them – they are going to come from there. I applaud Speak up About Me for their efforts.


Justin Reilly, esq. February 24, 2012 at 1:32 pm

A huge Thank You to Denise, all the kids and donors for this very important initiative!!


Erin Bonsey March 17, 2012 at 8:12 pm

I am the mother of a now 20 year old son who has suffered from CFS since he wash 17 years old. He was finally accurately diagnosed 2 months ago. Please let me know how he and I can help. Do you need video testimonials or something written? If we can afford the trip he will testify in person.
Ate there fund raising efforts underway?


Erin Bonsey March 17, 2012 at 8:14 pm

Whoops I meant he has been ill since he was 13 for 7 years.


Cort March 18, 2012 at 4:27 am

Thank Erin I will pass your comments on to Denise. Phoenix Rising is accepting donations for Speak Up About ME – simply use the donate button – and then in the comment section in Paypal state your donation is for SUAM.


Deonna April 11, 2013 at 11:21 pm

Erin, Please email asap me as I’d like to discuss a highly important matter.


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