Respected ME specialist Dr Enlander let the cat out of the bag at last week’s IOM public meeting when he signaled the formation of a new ME organization.
[quote]The IOM meeting…”it was perceived cynically by many, as a public relations exercise to cover up the cracks in the government’s approach, and an opportunity for some patient organizations to cement their all too cozy relationship with the government, and government dollars.”[/quote]
The ‘Academy of M.E. & C.F.S. Physicians’ will be “an Independent [sic] resource for government, corporate and private groups to derive information relating to the latest research, diagnostic methods and treatment approaches.”
The Academy (ACME?) will also train young physicians to better respond to ME; hence, I am guessing, the name.
Enlander has been one of the few dissenting voices against US Department of Health & Human Services’ distorted me/cfs policy and has built up an enormous bank of goodwill and respect among the disenfranchised patient community.
Late last year the HHS contracted the Institute of Medicine to undertake a ‘consensus’ study of the clinical diagnostic criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a severe, complex illness with neurological and immune dysfunction affecting millions in the US alone.
The IOM has some experience in this field having undertaken a series of reports on Gulf War Illness on behalf of the U.S. Department of Veterans Affairs, though at least one Gulf War veteran has a poor opinion of their efforts.
The announcement of the me/cfs study caused a storm of protest from some sections of the patient community, and, surprisingly, internationally, from specialists and clinicians.
Thirty-five of the most most respected ME/CFS researchers and clinicians voiced their concerns about the IOM contract in an open letter to the Secretary of the HHS, Kathleen Sebelius
The letter didn’t pull any punches: “…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.
“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.”
Enlander’s statement to the Jan 27 public meeting (read by Jay Spero in Dr Enlander’s absence) affirmed his position: “I was honored and pleased to have been asked to sign what has become known as the ‘Experts’ Letter’.”
Last month the IOM announced provisional members of the panel charged with directing the study, more than half of whom did not have any professional expertise in ME/CFS, a move which further angered patients and isolated the dissenting researchers.
Again Enlander: “If it was the case that there was opposition to the existing Canadian Consensus Criteria, then open discussion about these criteria would be more useful than closed door redefinition by a panel where the majority are not known to be familiar with the disease, Myalgic Encephalomyelitis.”
The IOM’s only public airing last week was supposed to bring all parties together to smoke the peace pipe, as it were. However, it was perceived by many as a cynical public relations exercise to cover up the cracks in the government’s approach, and an opportunity for some patient organizations to cement their all too cozy relationship with the government, and government dollars.
It was organized under a veil of secrecy, described best by outspoken patient advocate Jeannette Burmeister: “It’s like elections in East Germany where the Communist Party would always win by a landslide … of 99.9%.”
The public meeting was supposed to be the IOM’s grand gesture of openness, and a little generosity.
Enlander’s announcement turns a spotlight on a deepening discontent with government plans for me/cfs, and hints at the ongoing, long-running struggle for research dollars.
Enlander made one final point: “Were discussion and debate even necessary, one million dollars could still have been saved–a not insignificant percentage of NIH research funding dollars in this area. Given the paucity of funds allowed for research and study of what we know as Chronic Fatigue Syndrome, it seems, with all due respect, to be a shameful waste of money.”