Developments came fast and furious last night. First, the CFIDS Association announced that it would not oppose the IOM contract, but would actively call for the IOM to choose a panel that matches the CFS Advisory Committee recommendation from October 2012. Within a few hours, CFSAC announced on its listserv that the IOM contract would go forward and provided some additional information. And then late last night, we learned that thirty-five ME/CFS experts sent an open letter to Secretary Sebelius urging her to adopt the Canadian Consensus Criteria.
This letter starts with a bang: “[W]e have reached a consensus on adopting the 2003 Canadian Consensus Criteria (CCC) as the case definition for this disease.” Many of the people who signed the letter have been using the CCC for some time, but this is the first time to my knowledge that a group of experts has come together to support adoption of CCC in writing.
The letter goes on to urge HHS to adopt the CCC as the single case definition for all Department activities, both research and clinical uses. Then the next big statement:
[W]e strongly urge you to abandon efforts to reach out to groups such as the Institute of Medicine (IOM) that lack the needed expertise to develop “clinical diagnostic criteria” for ME/CFS. Since the expert ME/CFS scientific and medical community has developed and adopted a case definition for research and clinical purposes, this effort is unnecessary . . . [and] threatens to move ME/CFS science backward by engaging non-experts in the development of a case definition for a complex disease about which they are not knowledgeable. (emphasis added)
That is bold. The IOM contract has just been signed, but these experts are saying: No. I do not know what efforts the signatories will make to push this message and perhaps urge that the IOM contract be rescinded. But this is the strongest advocacy statement that we’ve seen from a group of research and clinical experts in quite some time, especially in the form of an open letter to Secretary Sebelius.
There are some big names on this letter. Ten of the signatories are current or former members of CFSAC. Four of the seven clinicians participating in CDC’s multisite study have signed on to this letter. Four are co-authors of the CCC and twelve are co-authors of the ME-International Consensus Criteria. You can see a complete list at the end of this post.
But there are also some big names missing from this letter. Three of the clinicians participating in the CDC multisite study are not listed, and other giants in the field like Dr. Anthony Komaroff have not signed. I do not know what process this group followed in drafting this consensus letter, so we cannot assume that someone not listed actually opposes this position. Perhaps more experts will sign on, now that this is public and gaining momentum.
The big question is what next? How will HHS reconcile investing in the IOM contract in the face of this open consensus letter? Will others join? Will the signatories actively advocate for the rescinding of the IOM contract? Is there sufficient consensus across the field? What position with the CFIDS Association and other organizations adopt in light of this letter? Will the IACFS/ME support this effort? (two of the signatories are on the IACFS/ME board)
The good news is that things are moving. Our experts are coming together in consensus, and speaking out. That’s fantastic! But we’re still in a pickle, aren’t we. On the one hand, HHS signed the IOM contract over the vociferous objections of many in the ME/CFS community. On the other hand, many prominent researchers have now joined together and told HHS that they should abandon the contract and move forward with the CCC. This is in line with the CFSAC October 2012 recommendation as well – achieve consensus of the experts on a case definition starting with the CCC.
The question I’m asking myself today is: IS ANYBODY LISTENING? There are so many moving parts, many at cross purposes. How do we pull it all together to move forward productively, based on the science? We cannot allow anyone to lose sight of the fact that the ultimate goal must be better research and clinical care for patients.
|Signatories||CFSAC member||CCC author||ICC author||CDC Multisite|
|Kenny De Meirleir||No||Yes||Yes||No|
|Mary Ann Fletcher||2012-2016||No||No||No|