UPDATE: The first paragraph of the sample email has been changed.
In addition, it would be helpful to use the subject heading, "Stop Your Attempts at Redefining ME" in the emails.
Thanks to all participating in this campaign!
Dear Secretary Sebelius,
I understand that HHS has cancelled the IOM contract but will “continue to explore mechanisms to accomplish this work”. While I appreciate that the Department has responded to the public by cancelling this contract, I object to the Department continuing to explore other mechanisms to define criteria for myalgic encephalomyelitis/chronic fatigue syndrome”. The experts have already defined this disease.
I am a member of the ME community and have witnessed firsthand the devastation of this disease. I am extremely concerned that you plan on doing this behind our backs with no input from us. Note that I am purposely using the term “ME” to distinguish the disease that has affected me from the overly broad “CFS”.
Two peer-reviewed consensus case definitions, developed by experts in this disease, already exist – the 2003 Canadian Consensus Criteria (CCC) and the 2011 ME International Consensus Criteria (ME-ICC), which used the CCC as its baseline. The CCC has been used both clinically and in research. Both are accompanied by clinical guidelines for medical practitioners, and are well regarded by patients, ME doctors, and ME researchers. Given that expertly defined and accepted consensus clinical criteria already exist, anything other than officially adopting one of these definitions wastes scarce taxpayer dollars and is unnecessary.
HHS has inexplicably refused to accept the CCC or the ME-ICC and even questions the hallmark symptoms of ME. Instead, it has promoted an overly broad view of the disease called “CFS”, which does not require the hallmark symptoms. This has confounded ME with depression, deconditioning and non-specific chronic fatigue, has severely impeded research, and is the direct cause of the medical skepticism and inappropriate or harmful treatment recommendations to which patients are subjected.
While you no longer appear to be seeking a contract with the IOM to develop a consensus definition, the fact remains that this effort was progressed in secret, apparently for many months and without consultation with key ME stakeholders. The timing of the announcement before a holiday weekend and the short response time indicate that HHS was not looking for input from the ME experts and ME community.
I have no confidence in the manner in which you are handling this matter, and frankly, don't see the need for anything but the obvious: Official adoption of one of the existing, expert consensus criteria.
Sincerely,
<Your Name>