The ME/CFS Interest Group Dr. Nath put together to brief the NIH has been excellent up to now. Dr. Komaroff, the Workwell Group, Dr. Jason, and Dr. Peterson have presented and I've gotten good reports from almost all of them. (I have not talked to Dr. Jason.)
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[/fright]But Dr. Maureen Hanson recently broke the news that Dr. Edward Shorter, a Toronto historian who makes Simon Wessely look like an angel, has been invited to speak at the NIH on the history of ME/CFS. The NIH couldn't have picked a more radical presenter.
Wessely, at least, recognizes the disease is real, and has said he believes it has a biological component, but Shorter the author of "How Everyone Became Depressed", believes it's nothing more than another in a long list of "psychic epidemics".
In her excellent post "An Open Letter to Dr. Koroshetz: A Plea for Sanity, Respect, and Science" Jennie Spotila reported that Shorter's original review of the IOM report was so extreme that Psychology Today removed it from their website.
That review revealed a kind of ugly, mean-spirited approach to ME/CFS and fibromyalgia that we haven't seen on this side of the Atlantic in decades.* In fact, it's exceedingly rare that professionals anywhere use the kind of language Shorter did to describe the IOM report and the ME/CFS community; it's just not how professionals speak in this day and age. The degree of venom used is extraordinary.
How the NIH believes Shorter could possibly add to their understanding of ME/CFS is completely unclear. We know what kind of history Shorter is going to give: he's going to talk about failed research studies and he's going to conclude it's some sort of mass hysteria and he is going to recommend that the NIH shut down it's biological studies and send everyone to a psychiatrist. The fact that most people with ME/CFS at one time or the other tried that route won't matter at all.
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[/fright]In response to Jennie Spotila's post, Dr. Koroshetz stated that Shorter was not invited by the ME/CFS Special Interest Group. That's a little hard to believe given that the invitation to the talk (see here) explicitly mentions the SIG. (The real inviter coopted the SIG's name? I don't think so. Koroshetz did state that Shorter was no longer listed as an invitee of the SIG; that was a step forward - but the man will still be giving his presentation.)
Koroshetz stood by the invitation stating that the NIH believes in an inclusive approach and that the "exchange of information and widely divergent scientific opinions followed by critical analysis is essential to moving any field forward."
I disagree. Behavioral approaches to chronic diseases are one thing, but Shorter is beyond the pale. His anger towards the ME/CFS community borders on the pathologic. Few if any professionals in this day and age use language like Shorter. It's just not accepted.
Neither people with ME/CFS nor any other disease community should be subjected to a man who demeans their health issues as "tales of woe" and refers to them as "moaning and groaning victims".
Shorter's misanthropic approach to ME/CFS and diseases like fibromyalgia surely has no place in mainstream scientific discourse and he shouldn't be invited to speak at institutions like the NIH.
Even people with mood disorders - still highly stigmatized diseases - aren't given the kind of treatment Shorter gave ME/CFS. Would the NIH invite a depression expert who called depressed people "whiney"? Or who called people with an anxiety disorder "hysterics"? Or who called schizophrenics "crackpots"?
Obviously not.
Whoever invited Shorter in - whether it was Wallitt, who has gotten good reviews from the speakers who've presented thus far - or someone else, engaged in a totally tone-deaf move. The ME/CFS community deserves to know how this happened.
The NIH surely knows how much this distracts from the otherwise stellar work they've been doing. The reports from Director Koroshetz and Vicky Whittemore on the NIH Working Group Teleconference call the other day promised much. Koroshetz stated that the ME/CFS funding increase will be significant and that the research center model being proposed for ME/CFS emphasizes patient collaboration. The research center model being used in ME/CFS has done wonders for other diseases.
Inviting in a man who has such a blatant disregard for this disease will only taint their good work. There's no way Vicky Whittemore wanted this to happen, and I can't imagine that Koroshetz, for all his talk of inclusivity, did. Shorter's approach is antithetical to the program he's putting together.
The Shorter presentation appears to be a blip in what otherwise appears to be excellent progress. It's disappointing to see the NIH Intramural Group - if the talk did originate with them - kick itself and the NIH in the foot again and obscure the good work they are doing.
Again, this is not just about ME/CFS. This is about the NIH inviting a man in who has transgressed the boundaries of civil discourse and acted in a non-professional manner. It should be ashamed, and Koroshetz, once he learned about Shorter, should have immediately disinvited him.
*A similar approach was seen in Canada's rejection of an ME/CFS research grant application. The reviewer stated that diseases like ME/CFS are "an artifact of medical specialization" and have no biological basis. Could that reviewer have been Edward Shorter? See "The Dark North" post (http://www.healthrising.org/forums/...e-cfs-grant-because-disease-is-not-real.4819/) for more.
_______________________
[fright]
Wessely, at least, recognizes the disease is real, and has said he believes it has a biological component, but Shorter the author of "How Everyone Became Depressed", believes it's nothing more than another in a long list of "psychic epidemics".
In her excellent post "An Open Letter to Dr. Koroshetz: A Plea for Sanity, Respect, and Science" Jennie Spotila reported that Shorter's original review of the IOM report was so extreme that Psychology Today removed it from their website.
That review revealed a kind of ugly, mean-spirited approach to ME/CFS and fibromyalgia that we haven't seen on this side of the Atlantic in decades.* In fact, it's exceedingly rare that professionals anywhere use the kind of language Shorter did to describe the IOM report and the ME/CFS community; it's just not how professionals speak in this day and age. The degree of venom used is extraordinary.
- "Just when you thought a stake had been driven through the heart of Chronic Fatigue Syndrome (CFS) it comes roaring back"
- "CFS came out of that whole brew of toxic beliefs about being tired all the time that arose in the 1970s"
- The IOM report was an "embarrassment . . . valueless, junk science at its worst."
- "The public hearings were a circus, with moaning and groaning victims right and left.”
- “In the several public hearings the CFSers appeared in mass to pour out their tales of woe.”
- Shorter called ME/CFS a "psychodrama“ and stated that we scientists "insist on evidence other than the tireless repetition of your subjective complaints.”
- "There have been no convincing new studies, no breakthrough findings of organicity, nothing....and there will never be."
From his review of the IOM Report
A phenomenon well familiar to historians of medicine is the psychic epidemic, an illness attribution that spreads epidemically, then is forgotten.
In the nineteenth century, psychiatry fostered such an epidemic with the belief that masturbation caused insanity. Many young people obsessed for years over the thought that their “self-abuse” had caused irreparable psychic harm.
What is required to convert these inchoate and nonspecific symptoms into an illness is an act of belief, a psychic epidemic, in other words. And my feeling as a historian is that this is what we are now dealing with in the ME/CFS movement.
How the NIH believes Shorter could possibly add to their understanding of ME/CFS is completely unclear. We know what kind of history Shorter is going to give: he's going to talk about failed research studies and he's going to conclude it's some sort of mass hysteria and he is going to recommend that the NIH shut down it's biological studies and send everyone to a psychiatrist. The fact that most people with ME/CFS at one time or the other tried that route won't matter at all.
[fright]
Koroshetz stood by the invitation stating that the NIH believes in an inclusive approach and that the "exchange of information and widely divergent scientific opinions followed by critical analysis is essential to moving any field forward."
I disagree. Behavioral approaches to chronic diseases are one thing, but Shorter is beyond the pale. His anger towards the ME/CFS community borders on the pathologic. Few if any professionals in this day and age use language like Shorter. It's just not accepted.
Neither people with ME/CFS nor any other disease community should be subjected to a man who demeans their health issues as "tales of woe" and refers to them as "moaning and groaning victims".
Shorter's misanthropic approach to ME/CFS and diseases like fibromyalgia surely has no place in mainstream scientific discourse and he shouldn't be invited to speak at institutions like the NIH.
Even people with mood disorders - still highly stigmatized diseases - aren't given the kind of treatment Shorter gave ME/CFS. Would the NIH invite a depression expert who called depressed people "whiney"? Or who called people with an anxiety disorder "hysterics"? Or who called schizophrenics "crackpots"?
Obviously not.
Whoever invited Shorter in - whether it was Wallitt, who has gotten good reviews from the speakers who've presented thus far - or someone else, engaged in a totally tone-deaf move. The ME/CFS community deserves to know how this happened.
The NIH surely knows how much this distracts from the otherwise stellar work they've been doing. The reports from Director Koroshetz and Vicky Whittemore on the NIH Working Group Teleconference call the other day promised much. Koroshetz stated that the ME/CFS funding increase will be significant and that the research center model being proposed for ME/CFS emphasizes patient collaboration. The research center model being used in ME/CFS has done wonders for other diseases.
Inviting in a man who has such a blatant disregard for this disease will only taint their good work. There's no way Vicky Whittemore wanted this to happen, and I can't imagine that Koroshetz, for all his talk of inclusivity, did. Shorter's approach is antithetical to the program he's putting together.
The Shorter presentation appears to be a blip in what otherwise appears to be excellent progress. It's disappointing to see the NIH Intramural Group - if the talk did originate with them - kick itself and the NIH in the foot again and obscure the good work they are doing.
Again, this is not just about ME/CFS. This is about the NIH inviting a man in who has transgressed the boundaries of civil discourse and acted in a non-professional manner. It should be ashamed, and Koroshetz, once he learned about Shorter, should have immediately disinvited him.
*A similar approach was seen in Canada's rejection of an ME/CFS research grant application. The reviewer stated that diseases like ME/CFS are "an artifact of medical specialization" and have no biological basis. Could that reviewer have been Edward Shorter? See "The Dark North" post (http://www.healthrising.org/forums/...e-cfs-grant-because-disease-is-not-real.4819/) for more.
_______________________
From Dr. Koroshetz:
Dear members of the ME/CFS community,
I appreciate the concern of many in the ME/CFS community as expressed in Ms. Spotila’s blog post concerning the visit and lecture by a Professor of the History of Medicine at the NIH intramural research program. It is important to understand the NIH’s commitment to reduce the burden of illness for people suffering with any illness regardless of its cause or its manifestations.
In fact the study of one condition not infrequently leads to clues to the treatment of another in totally unpredicted ways. The exchange of information and widely divergent scientific opinions followed by critical analysis is essential to moving any field forward. Investigators at NIH regularly invite individuals to conversations about their areas of interest.
This inclusion in scientific conversation is not an endorsement. Rigorously collected data that enables causal inference is the foundation of science. This remains the foundation of the NIH, and as stated from the start the NIH intramural investigators will focus on post-infectious ME/CFS in order to closely examine the clinical and biological characteristics of the disorder and improve our understanding of its cause and progression.
I hope that the ME/CFS community can endorse this scientific enterprise as we at NIH try to direct it to the problems faced by those who suffer with ME/CFS, both here at intramural research program and at universities and medical centers across the country. We know so little about the biological causes and nature of the disease that inclusivity of scientific thought will be critical to our success. At this point sadly we don’t know where the scientific enterprise will lead us, how long it will take, or from what area of research effective treatments will come.
The Professor mentioned in your letter was initially incorrectly listed as part of the ME/CFS Special Interest Group, which was corrected.The speakers that have come to the ME/CFS investigators are listed on the website at (http://mecfs.ctss.nih.gov/sig.html) and include:
June 15th, 2016: Anthony Komaroff, M.D.: An Overview of Chronic Fatigue Syndrome (ME/CFS)
July 18th, 2016: Leonard Jason, Ph.D.: Diagnostic Challenges and Case Definitions for CFS and ME
August 24th, 2016: Daniel Peterson, M.D.: CFS/ME: Perspectives from a Local Epidemic 1984-2016
September 21st, 2016: Staci Stevens, M.A. and Mark Van Ness, Ph.D.: Cardiopulmonary Exercise Testing in ME/CFS
Sincerely yours,
Walter J. Koroshetz, M.D.
Director, National Institute of Neurological Disorders and Stroke
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