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. Tina

    Tina Well-Known Member

    This is Jennie's response to Dr. Koroshetz.

    And then her rallying cry, "To which I say: Enough."

    I am seriously thinking of dropping out of this study. After what our community has been through it is hard enough to accept a seat at the table for psychiatry at all, but in the spirit of moving forward we all make concessions. But a man who is this vile and dismissive simply can not be entertained. If this is what they think needs to be considered I do not trust them to analyze the data in an impartial way. If they want a serious study they will boot him quickly.
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  2. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Yes, I changed that to historian. The bio I read is a little confusing. He is listed as a professor of psychiatry but he is a medical historian.
  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Yes, when you bring his name up it says he's listed in the Department of Psychiatry so I assumed he was a psychiatrist but he is not.

    I would argue though that whether he's a medical professional - and actually I think you could stretch it a bit and call him a medical professional as he's a professional who does all his work in the medical field - or just a professional - that you just don't see professionals belittle communities of people like that. It's not "professional" behavior.
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  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Well said by Jennie

    She is completely right.

    Which is why this whole thing is so puzzling. If what Koroshetz said at the conference call is true, then NIH really is moving forward on ME/CFS. The NIH is going to announce a major increase in funding - the kind of proportional increase that few diseases ever see. (It's not going to be $100 million or $50 million but it is going to be major step up - the kind of increase which rarely happens at the NIH.) The Intramural study will surely cost them several million dollars and is entirely biologically based.

    We're getting embedded into a research center model that has been proven to work in other diseases. We really are moving forward. That will all continue long after Shorter and his 1-hour presentation are gone.

    I really believe that he's a blip on the screen - a mistake - a very ugly mistake - that somebody made which does not reflect Koroshetz and Whittemore's views and the views of the Trans-NIH Working Group. Obviously, he does not reflect the view of the IOM report - which received positive reviews from everyone I can remember but Shorter - and which laid the basis for increased funding that we're seeing.

    Obviously someone at the NIH also believes his views should be heard. Since he was originally slated to speak at the SIG's meetings I assume that it was someone from there.
    If it was someone from the SIG I can only imagine that they did not understand they were about to wake a sleeping tiger in the ME/CFS community, although how they didn't understand that I don't know.

    I'm not worried about the NIH turning psychosomatic. They're doing too many tests that should prove otherwise, and they're putting money into research centers that will prove otherwise.

    It's just really unfortunate that this happened.
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  5. JennyJenny

    JennyJenny Well-Known Member

    When NIH included Walitt they played their card and we did not call their bluff. Oh, there were those of us that did but we were assured by the advocates who spoke with NIH and CDC that everything was just fine. They have now shown their hand and I believe it is too late.

    The NIH and CDC are going to have this categorized in mental health because insurance companies are orchestrating all of this. The bio markers will now be new mental health markers.

    Mental health is cheap, cheap, cheap and flushed with money as it should be. But the health system cannot have a disease that will cost them even more money to research and treat.

    I am in the process of being included in a focus group for PEM by the NIH which is being overseen by Walitt. I will describe PEM but I know it is going to be twisted into stress and the like.
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  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I have to respectfully disagree. Please don't let Shorter detract from the work that is going on.

    As disturbing as this talk is, if Shorter was their hand they would have given the intramural study to a psychiatrist, stuck ME/CFS in the Institute for Mental Health and begun CBT clinical trials. Instead, NINDS is taking the lead, and they gave their big study to a man who specializes in nervous system diseases caused by infections. That study includes more biological tests than I've ever seen before. That's their real hand.

    They showed their hand when they announced that they're going to fund research centers and are seeking to collaborate internationally with others. That's their real hand.
    Last edited: Nov 5, 2016
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  7. JennyJenny

    JennyJenny Well-Known Member

    This poor man is a Patsy.

    Nothing is going to come from the Trans NIH research when there are bio results. They will be lost to medical history with all other bio research for decades with no replications or expansion and mental health biomarkers will be chosen.
  8. Thenmoli Rajendran

    Thenmoli Rajendran New Member

    I wish so, too.
  9. Erin

    Erin New Member

    Wow, just wow!
    For us Canadians, his possible involvement in the denied study is a very intriguing possibility! Amazing the vehemence of his statements... as equally harsh as those of racists.
  10. Tina

    Tina Well-Known Member

    @Cort several responses back you quoted an earlier response of mine and you have included part of my thoughts, that if I am looking correctly, are attributed to Jennie. I don't need credit for anything, but I don't want to put words in Jennie's mouth either.

    The segment that begins, "I am seriously thinking of dropping out of this study. After what our community has been through it is hard enough to accept a seat at the table for psychiatry at all, but in the spirit of moving forward we all make concessions. But a man who is this vile and dismissive simply can not be entertained. If this is what they think needs to be considered I do not trust them to analyze the data in an impartial way. If they want a serious study they will boot him quickly." are my words.

    @JennyJenny I am already slated for my Focus Group call and I am hoping they will do something to make me feel better about my decision to participate. I would love to have some higher ups in our community give guidance as to whether we should support or not support the study.

    I do think Cort is right though, except for this, there is a lot of good stuff that may come of the study.
  11. Katrina T

    Katrina T New Member

    The letter from Koroshetz is pretty patronizing. And does not seem to be actually engaging with the argument.
    Cecelia likes this.
  12. weyland

    weyland Well-Known Member

    Probably because they haven't ignored other major diseases to the same degree. They have many decades of debt to repay to this disease.
    Karena likes this.
  13. Cecelia

    Cecelia Active Member

    If Shorter is going to make his speech, I think NIH ought to see that it is either live streamed or videotaped with public access. A transcript in short order would also be responsible. If Shorter's views are regarded by them as part of "Science", as opposed to the savage political history we have been subjected to, they will not object to making his speech public.

    More, I would then like David Tuller of The NYTimes or Miriam Tucker of The Washington Post to review it, in addition to all our expert patients, physicians, researchers and supportive family members.

    More, like Dr. Ron Davis, I think there needs to be an investigation and someone or someones fired over this. This is a waste of taxpayers' money, to add to the utter waste of it before, trying to confirm an irrational belief that ME/CFS is a psychosomatic ailment when the scientific evidence asserts otherwise. This is completely at odds with the NIH mission, not to mention medical ethics. To continue to try to block science, and coyly justify this as a valid part of the whole picture ("we want to hear all the views") is destructive. Who are the people at the top or in their working group who wanted Shorter to speak? We need to insist on the facts exposed and real consequences for those responsible.

    Shorter is obviously unable to help himself. I wouldn't waste any energy trying to understand or educate him. He does not deserve a seat at the table adversely influencing researchers and policy makers, and of course not patients. We need to identify who in the NIH asked and supports his views as they do not belong in the field of ME/CFS work either. We need to insist that these people are exposed and held accountable, and then to get on with the work that is so urgent and valuable ahead. The NIH is not so powerful that it can treat reality, ethics and taxpayers' money with such destructive disdain.

    Many patients lives are at stake.
    Last edited: Nov 5, 2016
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  14. Adelle

    Adelle Member

    I think we need to be careful and not look like we are trying to dictate how and what they do their research on (unless, of course, you are a scientist). That being said though, there is no need to ever have "information" provided on an illness that does not actually acknowledge the illness even exists. This is nonsensical. Do they bring in collaborators for cancer, and out of fairness of ideas, spend any time whatsoever on someone who says it is not real?? I agree with the above commenters, this is a waste of time and money, and that we need to potentially be suspicious over who invited him to speak. My best guess as to who might be involved are the insurance companies. I'm glad the ME/CFS community is staying so vigilant!
    Cecelia and Lissa like this.
  15. Della Mae Johnston

    Della Mae Johnston New Member

  16. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Agreed. I'm surprised that Koroshetz hasn't called off the talk - he has excellent grounds to do so. Hate speech - similar to what racists use as was pointed out - which denigrates qnd really jeers at the travails of an entire disease community - is so inappropriate in this day and age - yet here is the NIH is giving him a platform to speak.

    (It's possible they didn't know about the original version of the Psychology Today article).

    I'm trying to think why Koroshetz hasn't stopped the talk because it seems like a pretty open and shut case to me.

    (1) Shorter has written several books - he's well known - and therefore people want to hear them. He has a following - that may make more difficult.

    What Psychiatry Left Out of DSM-5: Historical Mental Disorders Today (Routledge, March 2015). His A History of Psychiatry: From the Era of the Asylum to the Age of Prozac (Wiley, 1997) has been translated into a number of languages, and he has also written books about the history of ECT, about the diagnosis and treatment of depressive disorders, and on other psychiatric subjects. His A Historical Dictionary of Psychiatry (Oxford University Press, 2005) is the only such dictionary available in any language.

    (2) We've used up our limited capital at the NIH, leaving the NIH is in no mood to do accede to the ME/CFS communities wishes even if those wishes make sense. We used up our capital with the Walitt imbroglio which apparently ticked off many inside the NIH, nd with what I thought was a horrible petition that can only have hurt us. The Walitt controversy was understandable but the petition may have put us over the edge.

    Perhaps things are so ugly in the NIH that Koroshetz could be facing a revolt on the other side - researchers saying I'm done with this - if he disinvites Shorter.

    I don't know if this is happening. I'm just trying to think why he wouldn't stop Shorter. I don't think this is about intellectual freedom or hearing all sides - I think our concerns easily trump that argument. I think it's a cost/benefit issue; at this point, Koroshetz feels it's better to PO the ME/CFS community than to PO others in the NIH. That actually makes sense - we are going to get some goods news Koroshetz said, which should eclipse the Shorter issue - so while this leaves a bad taste in one's mouth this should blow over.

    I imagine that his talk is either occurring now or will start shortly.
    Last edited: Nov 6, 2016
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  17. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Good points! We can't be seen as trying to dictate research. That will get us nowhere and could actually hurt us badly.

    Shorter, as you so well point out, doesn't even acknowledge the disease exists - and he denigrates people who have the illness.

    That's very different. A code of conduct or a code of acceptability for the ME/CFS community could start with something like
    • This is a serious disease which greatly impairs the functioning and quality of life of those who have it
    • People with this disease deserve respect
    People who don't meet these criteria shouldn't speak at the NIH on ME/CFS or work on it.
    Shorter obviously doesn't meet either criteria. It's too bad that we even have to think of something like this - few diseases do - but its clearly where we are at. FM is in the same category. I imagine based on the brief comments that Shorter believes the same about FM.

    He probably feels the same about IBS, interstitial cystitis and others.
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  18. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    You don't have much faith that this is a biological disorder ?
  19. Katrina T

    Katrina T New Member

    Yes, I don't get the reasoning either, so there must be something going on we don't see. People have pointed out that he's not a doctor, but that's not really the point--he's not a scientist. He's a historian. Which is not to say that a historian of science can't have something to contribute to exploring society's understand of our illness, etc. But that doesn't mean he has anything to contribute to the scientific discussion.

    I was googling his background and found that he did attend medical school for two years to give himself more background as he shifted from social history to history of science. This makes sense. I majored in history of science and we took both science and history classes--the point is to create scientifically literature historians. But he appears to have an activist view of the role historians can play in psychiatry which seems very unusual to me:[/QUOTE]
    Last edited: Nov 7, 2016
  20. weyland

    weyland Well-Known Member

    You're joking right? I think the entire HIV/AIDS community would disagree with you. They were about 1000x more aggressive, with true direct action campaigns against the NIH that netted them billions of dollars a year in research funding. We throw some shoes on the ground and sit there in wheelchairs while people walk by ignoring us, and every once a while send impassioned letters to our public health officials when they very clearly cross the line, and you think this is too much? Give me a break.

    This isn't a popularity contest. Public health officials and government research employees don't have to like us. They receive money from the government to study diseases, not people. They can't not study us just because they don't personally like us. That's not how any of this works.

    We can and have to dictate research, because there is 3 decades of proof that it won't be done correctly if we don't. Should we really just quietly and politely lay in our beds slowly rotting to death over the next few decades while we wait for the NIH to get their act together?
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