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ME/CFS Patients ‘Act Up’ - Inspire Positive Media Coverage Despite XMRV Hullabaloo

  [ 16 votes ]   [ 1 Comment ]
www.ProHealth.com • May 25, 2011


“This issue is not going away…. Heck, if we have to drag our beds to an HHS building to make a statement, it is my hope that we will do just that.”Rivka Solomon on paltry government spending for ME/CFS research

On May 10, a group of ME/CFS patients led by Rivka Solomon staged a mini-demonstration in front of the US Department of Health & Human Services in Washington, DC. Their message: Allocate more government funding for ME/CFS research, now!

Next, on May 25, a group of patients & advocates staged a similar protest in front of the HHS offices in San Francisco. See their statements in the video, below:



Positive results so far include:

A high-profile San Francisco Chronicle article on the San Francisco event ("Chronic Fatigue Patients Protest Lack of Funding," by Erin Allday). Hundreds of readers have shared the article by Twitter and Facebook, and Erin and the Chronicle can still be thanked for this coverage.

A Ms Magazine blog article on Rivka, ME/CFS, and the mini-demo campaign  (“Rivka Solomon Acts Up, Chronic Fatigue Be Damned,” by Paula Kamen). Importantly, Kamen reiterates Rivka’s challenge to other patients, encouraging them and their advocates to stage similar mini-protests at the 20 other HHS and CDC satellite and regional offices across the US.
 
A half-hour meeting between the San Francisco demonstrators and Eric Alborg, Regional Outreach Specialist of HHS’s Region 9. The group talked with him about the concerns and needs of people with ME/CFS, and he suggested ways they can raise the profile of these concerns with local institutions and legislators. He also accepted and agreed to deliver copies of a letter addressed to HHS leaders Secretary Sebelius, NIH Director Collins, NIAID Director Fauci, and Herb Schultz, Regional Director of HHS Region 9.

The letter included a list of basic ME/CFS community needs/demands plus a personal statement by San Francisco demo co-organizer Bobbi Ausubel, which reads:

“I am the mother of a daughter with the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS, which has very severely limited my daughter's ability to lead a simple work and social life for over 20 harsh years. I have been her primary support. Much of the time she has been so sick she is often homebound or bedridden with disabling symptoms, not just "fatigue"! Our family's life activities and resources are centered around the health needs of this daughter (and sister) we love.

“We expect more support from our government by way of research and clinical trials for this disabling disease that affects more than a million Americans.

“Most people with ME/CFS are too ill to be standing outside HHS today for a demonstration.  Those of us gathered here are speaking for all who are ill, and we demand to have more research and clinical trials now.” – B. Ausubel

Awareness – The Biggest Idea

So - regardless of the scientific community’s eventual findings on XMRV and other issues - grassroots activists are creating a foundation for change.




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Article Comments Post a Comment

Just how much does the government spend on ME/CFS?
Posted by: fibrochondriac
Jun 8, 2011
According to Phoenix Rising $5 million a year is spent on ME/CFS research...about $5 per patient. They spend more on hay fever. This is ridiculous. Considering the cost of the illness (what is it...$20 billion I think?) it's also very stupid.
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