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"We’ve had enough."

  [ 77 votes ]   [ 3 Comments ]
By Erica Verrillo • www.ProHealth.com • December 9, 2013


From left to right: Susan Kreutzer, Edward Burmeister, Jeff Kreutzer, Jane Pannell, and Susan Stapp. Photo: Erica Verrillo

By Erica Verrillo

On Monday, December 9, 2013, a small group of ME/CFS activists gathered in front of the San Francisco Federal Building to protest the IOM contract. The demonstration was organized by Susan Kreutzer, a former attorney and long-time ME/CFS patient.

The purpose of the demonstration was to draw attention to the continuing governmental neglect of over one million ME/CFS sufferers in the United States – 17 million worldwide - and to hand deliver two petitions totaling 6,000 signatures to the regional HHS office located in the Federal Building. The petitions demand an increase in funding for research into ME/CFS, the immediate adoption of the Canadian Consensus Criteria (CCC) to define the illness, the canceling of the IOM (Institute of Medicine) contract to define ME/CFS, and officially dropping the misleading name “chronic fatigue syndrome” in favor of the term used by the World Health Organization, myalgic encephalomyelitis (ME).

To start the event, Jeff Kreutzer and Edward Burmeister unfurled a seven-by-six-foot banner displaying the 3,000+ signatures from a petition initiated by Patricia Carter. The 95-page petition demands the cancelation of the IOM contract and the adoption of the CCC. A second petition with nearly 3,000 signatures, started last summer by Mary Dimmock, also demands the adoption of the CCC and the elimination of the demeaning name “chronic fatigue syndrome.” To bring the point home that ME/CFS affects people everywhere, Susan arranged a display of flags representing the home states and countries of those who had signed the petitions – all 50 states, the District of Columbia, Puerto Rico, and 34 countries spanning the globe.

Susan Kreutzer, Jane Pannell, an RN disabled by ME/CFS, and Edward Burmeister spoke about the inequities of NIH funding, the ramifications of yet another vague definition resulting from the IOM contract, and the devastating impact of the illness on millions of people all over the world.

Nothing could express the frustration of the ME/CFS worldwide community better than the comments on the petitions. “Walk a mile in my shoes!” says Carol Baker (Australia) in a direct challenge to officials who have designed policies preventing funding and halting the development of treatments. Many more patients wrote that there was “no way to describe this illness” and explained how they had lost their careers, friends, and lives to the disease. In one particularly poignant message, Jana Buzolic (Croatia) wrote, “I got ill when I was 22 years old. This is when my life ended and the twilight began.”

Tomorrow Susan Kreutzer will again demonstrate at HHS headquarters in Washington, DC. We can only hope that when she hand delivers the bound copies of these petitions to Secretary Sebelius, and to 21 Congressmen and Senators on Wednesday, that they will take the time to read what these 6,000 people have written.

“For 30 years,” says Susan, “we have waited in line for the government to listen to us. We’ve had enough.”




Discuss This Article Post a Comment 


Thank you!
Posted by: NIELK
Dec 9, 2013
Thank you Erica for reporting back to us and to Susan for organizing this demonstration. I wish I could have joined in with you, Jeff, Edward and Jane. Your actions are hugely appreciated!

Gabby
Reply Reply

Thanx
Posted by: MamaChill
Dec 10, 2013
Thanx for posting this, made interesting reading, not surprising really, but i do feel that we are all increasing in numbers and at some point the government's will have no choice but to listen XXX
Reply Reply

More People Need To Speak Out
Posted by: Webmind
Jan 7, 2014
More people need to speak out and demand government action about this horrible disease that has been all but neglected by the mainstream medical community and the FDA.

For example, GHB, the greatest sleep inducer ever discovered and all natural, was refused acceptance by the FDA as a treatment for ME.

This despite the fact that sleep disorder is a central part of this disease.

We need this community to unite politically and raise money to research and create support for this illness.
Reply Reply


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