Tell DHHS: We have suffered long enough

“This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization.” Laura Hillenbrand, author of Seabiscuit and ME sufferer.

Patients with myalgic encephalomyelitis (ME) are terribly ill with a neuroimmune disease that robs them of their lives and leaves many suffering for decades.

Yet today, the disease is characterized as “fatigue” and patients with ME are lumped together with patients with depression and deconditioning. This has stalled ME research, confused doctors, and hurt patients.

On May 12th, 9 ME patient organizations and 26 advocates sent a joint letter to the Department of Health and Human Services (DHHS) calling on them to stop using the term “chronic fatigue syndrome” with its vague case definitions and start using the Canadian Consensus Criteria, which requires the hallmark symptom of post-exertional malaise seen in ME.

If you do one thing this month, join us and sign this petition to DHHS to change the definition - and the name!

If we get 25,000 signatures in 30 days, we will try to take it to the White House. The current threshold for the White House is 100,000, not 25,000 as originally stated.

The DHHS letter is here and a summary and FAQ is here.

Note: This petition has been created to respond to requests from ME patients to add their names to the May 12 joint letter to DHHS. The signatures will be collected and delivered at one time.

Secretary Sebelius, Dr. Koh, Dr. Frieden and Dr. Collins,

For decades, ME patients have borne the brunt of the failure to correct the flaws with how “CFS” has been defined. Patients and their families can not accept this situation any longer.

I join others in calling on DHHS to stop using the term “chronic fatigue syndrome” and the vague “CFS” definitions and start using the Canadian Consensus Criteria.

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