NIH Stumbles: Asks ME/CFS Denier to Speak on Chronic Fatigue Syndrome

Discussion in 'ME/CFS and FM News' started by Cort, Nov 4, 2016.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    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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    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.
    • "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."
    Shorter managed to reign in his anger enough to amend his review to make it more palatable but the same message prevailed: ME/CFS is not real.

    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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    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.

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    Last edited by a moderator: Nov 13, 2016
  2. Tina

    Tina Well-Known Member

    So where does that leave the integrity of the Intramural Study on ME/CFS? Is this going to be a fair study?
     
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  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    The study is still all pathophysiological; that's why I don't understand why someone (Walitt?) invited this guy in...It's just so weird....I wouldn't think it should affect the study but it leaves an uneasy feeling that's for sure.
     
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  4. Anomie

    Anomie Active Member

    I follow the open medicine foundation on Twitter and they just posted this text message from Dr Ron Davis:
     

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  5. Rachel Riggs

    Rachel Riggs Active Member

    Such cruel words... made me cry. What kind of soulless creature thinks this way??
     
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  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Thanks - no surprise that Ron is right on this. Here's the text:

     
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  7. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    He's totally pissed off at the idea that ME/CFS is a real disorder. He probably feels that way about lots of disorders. Based on his piece he feels the same way about FM.

    But why such cruel language? I have no idea. I've never seen anything like it from a medical professional in print.
     
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  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    After my anger died down I feel sorry for Vicky Whittemore actually. She's worked so hard to earn the ME/CFS communities trust and then some idiot or, at the very least, some totally clueless individual comes along and sabotages that.

    Shorter does not in any way reflect what I see the NIH doing but there's someone at the NIH who agrees with him or feels that he should be heard, and as Ron Davis said, we should know who that is and what they were thinking when they invited him.

    I like what Gamboa said when we learned about the Canadian grant review (see the Dark North post). The tone of that review was very similar; the reviewer said this is not a real disease - you're wasting your money studying it, etc. I imagine that it even could have been Shorter since he is a Canadian.

    Now that this person is out in the open it gives us a chance to ferret people like that out; it actually gives us a chance to move forward.
     
    Last edited: Nov 4, 2016
  9. This is disgusting! I feel like we're back in 1986! I wish this guy would get CFS!
     
  10. There has to be a reason he expresses so much distain! Maybe he came out very vocal to his peers in the very beginning and expressed a viewpoint that now he feels he can't back down from without looking like an idiot. But think what he'll look like when the evidence completely refutes his every word, which it does already! He's totally closed . Poor pathetic person. I stand by what I said earlier, I wish he would get CFS.
     
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  11. Neunistiva

    Neunistiva Member

    This is really what I don't get. How can this kind of animosity and hatred towards patients be tolerated, even if they are psychiatric patients?
     
  12. ShyestofFlies

    ShyestofFlies Well-Known Member

    So I don't have an answer for this myself, but something ALWAYS strikes me as interesting when these - 9/10 psychiatric or psychology type nay-sayers voice their opinion.

    While I know 100% for certain that ME/CFS is not depression, if I were to "play along" with these people and say it were...

    There's still a problem and it's this: if you ask most providers in mental health they will not tell you that people with depression are malingerers not deserving of disability benefits if they are sick and not improving. Most will support truly ill patients in seeking benefits if they need them on a mental health diagnosis alone.

    Which is telling and fascinating- as you will almost always hear that [we don't deserve any benefits and just need therapy] from the "ME/CFS is just depression/psychiatric disturbance" crowd.

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    So it strikes me that they are among the camp that is anti-welfare, and anti-recovery, anti-patient.

    Wholly, 100%. This is about control. It's politically conservative (in the bad way) and I would be willing to bet these people are among those who believe no disabled people should be receiving benefits of any kind unless they are "100%" visibly disabled.

    It is very interesting: these same people do not push for "biomarkers" in their own categories of illness-

    Depression likely is biological for many many people, and yet they (this group of providers) don't push for biological explanations because their entire business profits off of diagnosis by symptoms- no tests confirm depression to those they hand out diagnoses to.

    If you are so sure [ME/CFS = depression] - push to find a biomarker for depression. Then push to prove that people with ME/CFS have that biomarker.

    But no, they want to replace what they assume is a "subjective" illness diagnosis with ANOTHER because they say so.

    The problem is these people are in the behavioral camp of mental illness too- which is a problem for those whose mental illness is not behavioral (a majority). Plenty of those with mental illness do not have primarily behaviorally based illnesses - behavior may contribute, but it is not causal.

    The book they use to diagnose here (DSM) is wholly subjective and often detrimental.

    I could go on for miles on the harm caused by the DSM and how it pathologizes normal behaviors without additional criteria being met (gender nonconformity, grief, etc). Still it is just one way to diagnose.

    It is so informal receiving a mental illness diagnosis today.

    TL;DR: Outsider-gatekeepers on a power and control abuse wheel trip.


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    But finally there is another thing- if a psychiatrist ever talked to me as a patient this way even about my *just* mental illness- I would report them to an ethics board so fast their head would spin.

    This is an inappropriate way to speak to any client/patient- mental health or physical or both. It is an ethical violation- no matter what. It's an abuse of power in a personal sense (one on one context) and an abuse of power on a group wide context as well.

    It is inappropriate, childish, and unprofessional to act this way towards a group of sick people REGARDLESS if you FEEL the cause is psychological or physical.

    And you know what is subjective? The way these psychiatric doctors - a medical field barely old enough to be based on science as they themselves point out - use FEELINGS to justify ABUSING patients.

    If they're so "right" be patient and wait for the science to prove you right. If you advocate that nothing be done- you just prove you have something to hide and have ulterior motives - in this case: profit.

    Well too bad, your field already is failing to provide adequate care to actually mentally ill people across the board. Don't add more patient burden off your SUBJECTIVE NON-MEDICAL FEELINGS.
     
  13. JennyJenny

    JennyJenny Well-Known Member

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    Walitt!
     
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  14. ShyestofFlies

    ShyestofFlies Well-Known Member

    That's a whole lot of "feelings" for a guy who thinks we're overly emotional hysterical wimps!

    In my experience psychiatrists are very little monitored, very little reported when they cross ethical lines, and very likely to have god complexes and power and control issues. They often get away with mistreating patients, and because of privacy issues there is little patients can do to overrule their power.
     
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  15. ShyestofFlies

    ShyestofFlies Well-Known Member

    Exactly: this would be a breach of ethical practice and considered abuse of power towards psychiatric patients alone. Just because psych patients have "mental health" issues doesn't mean it's not a real medical problem or a brain and chemical disorder- not just behavioral silliness.

    People who think that way are stuck in the dark ages and often feel mentally ill people are to blame for their own symptoms and illness. Hmm sounds familiar...
     
  16. Rachel Riggs

    Rachel Riggs Active Member

    I do TOO!!! hahaha
     
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  17. ShyestofFlies

    ShyestofFlies Well-Known Member

    The best way to not look like an idiot in that case is to stop talking or apologize and move on, not dig your heels in further to your ignorance! You know? No this guy strikes me as one- even when proven wrong, he will claim the studies were bogus, he will say we all (from our income lol) paid the researchers off, and that he is still right and everyone else is wrong. It's dogma and pride.
     
  18. ShyestofFlies

    ShyestofFlies Well-Known Member

    http://occupyme.net/2016/11/04/dr-koroshetz-responds/

    Article: 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

     
  19. Gamboa

    Gamboa Member

    I am beyond furious after hearing about this. And yes, it does make me wonder if Shorter is somehow behind the rejected CIHR recently.

    I had forgotten about him--or perhaps my brain purposely put him in the garbage bin where he belongs--but now that I have to think about him again I would like to go further and do something to stop him spreading any more of his vicious and hurtful beliefs about this disease.

    It's time we here in Canada put a stop to these antiquated beliefs. For starters perhaps we can all send letters to him and even copies of the latest research showing that this is very much a real disease with many different biophysical abnormalities that can be measured.
     
    Last edited by a moderator: Nov 4, 2016
  20. I am not as upset at the goofball or lingering Strauss-follower invited the angry dinosaur. What I'm most upset about is that this was not mentioned in the "we want to be transparent / we want to keep you informed" phone call just the day before. Did no one on that call know he was coming? If so, how can we trust the calls are really telling all NIH is doing on the disease? And if people or a person on the call knew and didn't tell, then they are hiding stuff while pretending to be transparent.

    This part of it has broken trust. And, in my view, trust can only be restored if there is an explanation of who made the decision, explanation of why it wasn't mentioned in the call, and if there was purposeful hiding, whoever is responsible for deciding to hide it from patients be removed from all future ME/CFS stuff at the NIH.

    Only when this information is released and the appropriate action taken can trust be restored.
     
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