Please continue sending letters to DHHS
There is a Facebook event page https://www.facebook.com/events/705280782832088/ that has sample letters that can be used/adapted….
A slightly different sample letter (feel free to adapt) is posted below.
Each of these letters reflects the cancellation of the proposed solicitation and urges DHHS to stop attempting to redefine ME.
Dear Secretary Sebelius,
I understand that HHS has canceled 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 purposely use 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 appropriate 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 that this effort was progressed in secret, apparently for many months and without consultation with key ME stakeholders is extremely disconcerting. In addition, the timing of the announcement before a holiday weekend and the short response time indicates that HHS was not looking for input from the ME experts and ME community.
I do not see the need for anything but the official adoption of one of the existing, expert consensus criteria.