A Tiger Awakes: ME/CFS Research Community Takes A Stand – Blasts Federal Efforts to Create Definition
ME/CFS Experts Reject Federal Effort to Produce Definition
A sleeping tiger just woke up.
On the same day the Department of Health and Human Services (DHHS) announced, in the face of strenuous opposition, that they’d entered into a contract with the IOM to produce a clinical definition for ME/CFS, the ME/CFS professional community reared it’s head and emphatically rejected that effort, endorsing the Canadian Consensus Criteria.) (Significantly, that group included Dr. Lenny Jason, some of whose studies had raised questions about the CCC.)
The Feds decision to include the IOM, a group without experience in ME/CFS (or in creating definitions), to tackle one of the most sensitive issues in ME/CFS, displayed hubris, ignorance and tone-deafness. It’s hard to imagine this happening under the watch of the prior DHHS liasons, Dennis Mangan and Wanda Jones, both of whom made efforts to engage the ME/CFS community (and are still engaged with it).
Most of the big names – Klimas, Peterson, Bateman, Snell, Lerner, Jason, Enlander, Broderick, Chia, De Meirleir, etc. signed the letter strongly endorsing the CCC, and warned that not using it will harm patients, impede research efforts and efforts to find biomarkers.
“As leading researchers and clinicians in the field, however, we are in agreement that there is sufficient evidence and experience to adopt the CCC now for research and clinical purposes, and that failure to do so will significantly impede research and harm patient care.”
The experts echoed ME/CFS advocates concerns about lack of expertise at the IOM
“We 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.”
They even suggested the effort could move the field backwards
“Worse, this effort threatens to move ME/CFS science backwards…”
Who could blame them for thinking that? The fact that the IOM contract process was done in secret, and that the federal advisory committee was prohibited from speaking out on this topic made everyone’s hair stand on end. The last major federal effort to produce a definition – the Empirical Definition – brought ME/CFS experts in at the front-end, only to have a small team of CDC staff develop a definition that shocked virtually everyone. Perhaps the DHHS admins, new to this field, should have done a little research on how that turned out.
With warning flags sprouting up like mushrooms at the IOM’s Gulf War Definition project, the ME/CFS experts were not in a trusting mode.
Indeed, the Feds and ME/CFS experts have been on separate courses with ME/CFS experts developing two definitions (CCC and ICC) , and the Feds developing one (Empirical definition), which couldn’t have been more different. Something had to crack at some point and it has; an open rift has developed between the ME/CFS experts and the DHHS
The DHHS is essentially encircled with a small group of administrators bucking the wishes of both ME/CFS experts and advocates. What they’ll do is entirely unclear. They brushed aside advocates appeals without once reaching out to them but having a significant part of the ME/CFS research and physician community allied against you is another deal entirely. Plus they still have a research definition project to deal with.
Some Groups Hold Back
The CFIDS Association of America has a bit more faith; while explicitly stating the need to operationalize the CCC in any new definition, the CAA did not join either the ME/CFS advocates or the experts efforts.
The CFIDS Association believes that any review of current clinical diagnostic criteria should include requirements to validate and operationalize the Canadian criteria
The slow-moving IACFS/ME did not join the letter and neither has its President, Dr. Fred Friedberg.
The way this has played out is a shame. A federally sponsored definition could be a major achievement (say bye-bye Fukuda, hello to postexertional malaise), and the IOM could have produced a definition that moved this field forward; the problem is nobody trusts outside experts on this topic, and the DHHS’s heavy-handed approach has alienated the ME/CFS community.
For now advocates and patients need to endorse the effort to overturn the contract. More on that later.
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