On May 12th, 9 ME patient organizations (including Phoenix Rising) and 26 advocates sent a letter to Secretary Sibelius, Dr. Howard Koh, Dr. Thomas Frieden and Dr. Francis Collins at the Department of Health and Human Services (DHHS). In that letter, we expressed our strong concerns about the department’s current definition activities related to “CFS” and called on them to start using the Canadian Consensus Criteria for ME, which requires the hallmark symptom of post-exertional malaise. A summary and FAQ about the letter is here, and the Phoenix Rising article about it is here.
Tell DHHS: Fatigue is not a disease
For those of you who wish to become part of this important initiative, a petition has now been created calling on the DHHS to stop using the term “chronic fatigue syndrome” and the vague “CFS” definitions and start using the Canadian Consensus Criteria. We urge all our members and readers to please sign the petition and spread the word to everyone you know.
If we get 25,000 signatures in 30 days, we will try to take the petition to the White House. It’s a huge goal, but even if we don’t reach it, we will use the response as further evidence of patient interest in addressing this critical issue. The more signatures we can get, the more pressure we can apply to the DHHS to stop perpetuating the “web of confusion” that has confounded ME research, made drug development all but impossible, and led to the inappropriate and sometimes harmful guidelines currently applied to “CFS” patients. To join that effort and sign the petition, please use the following link:
Elizabeth Unger’s Reply
Elizabeth Unger (Chief of the Chronic Viral Diseases Branch at the CDC) has now replied to the letter as follows:
Sent: Wednesday, June 5, 2013 5:58 PM
Subject: Response to signatories of May 12 letter c/o Marry Dimmock
At the recent Invest in ME conference, Dr. Andreas Kogelnik began his keynote address with a cartoon highlighting what we don’t want: “We’re ready to begin the next phase of keeping things exactly the way they are”. Workshops and systematic reviews are all very well, and perhaps the department’s belated efforts will bear fruit one day, but the patient community is demanding real change now.
In October 2012, CFSAC called for an urgent stakeholders’ workshop on a case definition, using the Canadian Consensus definition as a starting point. On May 12, 2013, 9 patient organizations and 26 independent advocates called for DHHS to adopt the Canadian Consensus definition for ME and dismantle “CFS”. In response, we have been told that preparations for a systematic review of the current literature are under way, the agencies are demonstrating ‘increasing engagement’ and as advocates we are ‘essential partners in moving forward’.
That isn’t an answer, it is not what we called for, and it simply isn’t good enough. If CDC is “aware of the issues” we described in our letter, then it is aware that its continued failure to adopt a disease appropriate case definition is unproductive and harmful to patients. It should make the appropriate changes now to mitigate that continuing damage. We can’t afford to wait for the various agencies to gather evidence in a process which by their own admission has – so far at least – excluded those patients who are bed-bound.
We do not claim that the CCC is a perfect case definition, and many of us would ideally wish for the DHHS to leap ahead to the ICC, but the adoption of the CCC would be a huge step forward. As we said in the rationale for our recommendations, we believe that “it provides the best option to establish a disease appropriate baseline definition in the short term that can readily be further evolved in partnership with ME experts as additional data, knowledge and experience is gained, and as the definition is further operationalized and biomarkers are validated.”
So if you’re not prepared to wait – until 2014…or 2015…or 2016 – for the DHHS to eventually come up with its own consensus case definition for ME, then we urge you to join us in calling on the DHHS to enter the 21st century and adopt the 2003 Canadian Consensus definition. Please sign the petition – and don’t forget to ask your friends…