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

[Tina]

This is Jennie's response to Dr. Koroshetz. http://www.occupycfs.com/

“Inclusivity of scientific thought” does not typically include hypotheses that have been disproven. NIH does not invite HIV denialists and anti-vaxxers as speakers because they add no value to NIH’s work. So if NIH is making sure an opinion is included in the conversation, then NIH has made a judgment that the opinion is worth thinking about. Extending an invitation to Dr. Edward Shorter means that NIH expects he will say something relevant to its work.

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

Until the National Institutes of Health – as an institution and as a collection of individuals – sees this truth of the matter, there is nothing more to say.

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.

 

[Cort]

Cort, you describe this execrable man as a psychiatrist, but as far as I can see he has no medical qualifications at all. He is a historian. How he has amassed so much power and apparent kudos is beyond me and extremely worrying. It isn't only ME/CFS he has such disdain for, he seems to specialise in creating controversy.

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.

 

[Cort]

Ed Shorter is very far from a medical professional; he's a PhD, not an MD.

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.

 

[Cort]

This is Jennie's response to Dr. Koroshetz. http://www.occupycfs.com/


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.

Well said by Jennie

People with ME/CFS are not delusional somatizers. The National Academy of Medicine (IOM) report was not junk science. Militant advocates did not hijack the committee. People with ME/CFS have not obsessed their way into disability.

Until the National Institutes of Health – as an institution and as a collection of individuals – sees this truth of the matter, there is nothing more to say.

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.

 

[JennyJenny]

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.

 

[Cort]

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.

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.

 

[JennyJenny]

Instead they gave their big study to a man who specializes in nervous system diseases caused by infections.

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.

 

[Thenmoli Rajendran]

This is disgusting! I feel like we're back in 1986! I wish this guy would get CFS!

I wish so, too.

 

[Erin]

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.

 

[Tina]

@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.

 

[Katrina T]

The letter from Koroshetz is pretty patronizing. And does not seem to be actually engaging with the argument.

 

[weyland]

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.)

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

 

[Cecelia]

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.

 

[Adelle]

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!

 

[Della Mae Johnston]

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.)

[fright]View attachment 2202 [/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 is 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.

[fright]View attachment 2204 [/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 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 "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.

_______________________

 

[Cort]

The letter from Koroshetz is pretty patronizing. And does not seem to be actually engaging with the argument.

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.

 

[Cort]

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!

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.

 

[Cort]

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.

You don't have much faith that this is a biological disorder ?

 

[Katrina T]

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

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: https://historypsychiatry.com/2012/04/26/how-i-became-a-historian-of-psychiatry-edward-shorter/[/QUOTE]

 

[weyland]

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

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?