Edward Shorter to give talk on CFS at NIH

[Denise]

fwiw - I received this email from NIH a few minutes ago
"Response to the community

NIH ME-CFS Working Group Questions

1:12 PM (0 minutes ago)


Below is a letter from Dr. Walter 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


On behalf of the Trans-NIH ME/CFS Working Group"

 

[Never Give Up]

fwiw - I received this email from NIH a few minutes ago
"Response to the community

NIH ME-CFS Working Group Questions

1:12 PM (0 minutes ago)


Below is a letter from Dr. Walter 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


On behalf of the Trans-NIH ME/CFS Working Group"

Ughrrrrrrrrrrrrrrrrrrrrrr!

 

[viggster]

I don't like that Shorter was invited, but it looks like Koroshetz is saying the ME/CFS group did not invite him. I wonder who did. Also, he's scheduled to talk in a small classroom - this is not a major event at NIH.

 

[Never Give Up]

No one with any brains is going to show up to listen to a non-scientist like Shorter anyway.

I don't know about that. If you had no personal experience with psychological theories blocking your access to effective care wouldn't you find his whole story interesting? He weaves a great story and it pushes all of the thank-god-that-could-never-happen-to-me and yeah-we're-doing-a-great-job buttons that make people feel better about things, unless of course they happen to be sick and SOL.

 

[Never Give Up]

I don't like that Shorter was invited, but it looks like Koroshetz is saying the ME/CFS group did not invite him. I wonder who did. Also, he's scheduled to talk in a small classroom - this is not a major event at NIH.

I hope no one shows up.

 

[Nielk]

If you thought my blood was boiling before - you should see me now!

No apologies from Dr. Koroshetz. The lecture is going on. The only thing they are changing is that it is not from the MECFS intramural group.

It is so important that he wants ALL NIH investigators to hear him!

 

[alex3619]

I thought that one is easy: stop dragging their feet, give more money for research and stop giving equal grounds to unscientific hate-mongers as they do to real scientists.

I would focus that further to a demand for adequate funding for biomedical research. Like a minimum of 20X as much.

 

[Dx Revision Watch]

No one with any brains is going to show up to listen to a non-scientist like Shorter anyway.

Papers by Shorter (from PubMed)

https://www.ncbi.nlm.nih.gov/pubmed/?term=Shorter Edward

Among others, he has co-authored with David Healy, the late Bob Spitzer, Bernard Carroll, Max Fink.

He's part of Allen Frances' psychiatry chums circle, too.

Edited to add: For readers not aware - James C Coyne also gave a platform to Shorter in April and promoted Shorter's books and Shorter's blog hosted on the Psychology Today blog platform.

 

[Nielk]

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.

Scientific? What is scientific about Shorter's somatoform beliefs? He hopes that we will endorse this? Is he delusional?

 

[akrasia]

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.

Shorter has said, There have been no convincing new studies...& there never will be. One of the great scientific utterances! So inspiring.

Perhaps, he is there to deliver the annual Nostradamus Memorial Lecture.

 

[Mary]

@Wildcat - well, I came up with this - I'd appreciate any comments from you or anyone else. I just saw Koroshetz's non-response to Jenny Spotilla - they are clueless, or worse. Let me know if you think this is too inflammatory. FWIW, Jenny's letter was perfect, so I cannot imagine getting any better response to mine:

On November 3, 2016, the NIH Intramural Research Program posted that you will be sponsoring a lecture, "Chronic Fatigue Syndrome in Historical Perspective", to be given by Edward Shorter, Ph.D. on November 9, 2016 (https://webcache.googleusercontent....s-and-events/events+&cd=1&hl=en&ct=clnk&gl=us

I don’t know where to begin. Inviting Edward Shorter to talk about ME/CFS is tantamount to asking the KKK to lecture on the history of civil rights.

Here is the opening paragraph of something Mr. Shorter posted on February 19, 2015, on the Psychology Today website (https://web.archive.org/web/2015022...essed/201502/chronic-fatigue-syndrome-is-back

"Just when you thought a stake had been driven through the heart of Chronic Fatigue Syndrome (CFS), it comes roaring back, propelled this time by a committee of the Institute of Medicine (part of the National Academy of Sciences). It’s a committee that the CFS patients’ lobby has roped, captured and hogtied. How the Institute of Medicine could have let itself in for this embarrassment is a mystery. Their report is valueless, junk science at its worst."

And it goes downhill from there. Here is the second paragraph written by the speaker scheduled to appear before you on November 9th:

"CFS came out of that whole brew of toxic beliefs about being tired all the time that arose in the 1970s; it became crystallized with the diagnosis "Chronic Epstein-Barr Virus Infection," then morphed into Chronic Fatigue Syndrome (Myalgic Encephalomyelitis, or "ME," in the UK). Finally, the wind went out of this particular sail late in the 1990s when it became apparent to the patients that nobody believed they had a distinct organic disease, as real as mumps, called "CFS."

I could not make this up if I tried. You can read the rest of it here: https://web.archive.org/web/2015022...essed/201502/chronic-fatigue-syndrome-is-back

There is no legitimate reason for Mr. Shorter to address the ME/CFS Special Interest Group. Besides knowing nothing about ME/CFS and, even worse, harboring false and dangerous beliefs regarding same which he feels free to espouse in a public forum, he is openly hostile to and contemptuous of ME/CFS patients. He is the embodiment of the forces of ignorance and ill will which have stopped open inquiry and research into this most disabling of illnesses for the last 30 years.

I hate to say it but this is exactly what was feared by the ME/CFS community when it was announced that Brian Walitt was going to be lead clinical investigator of the NIH ME/CFS intramural study. As you know, Walitt has published statements and harbors beliefs similar to Mr. Shorter, only he says it nicer. (http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/

There is a very deep and well-founded distrust of the NIH and the CDC by the ME/CFS community, due to 30 years of neglect and abuse by Shorter and his ilk, and misallocation of funds earmarked for ME/CFS research. We were asked a year ago by Francis Collins to start trusting the NIH and to believe they are finally sincere about wanting to tackle this horrible illness. I’m afraid having Mr. Shorter speak will seriously if not completely fracture the fragile goodwill towards or trust of the NIH by the ME/CFS community.

I cannot conceive of any basis for believing that Mr. Shorter was invited in good faith. His views are out there for everyone to see. And if he was invited in error, then whoever invited him is guilty of breathtaking incompetence and should not be in a position to do things like this.

Mr. Shorter’s on-line ramblings referenced above were pulled 5 days after publication on-line, and replaced with a milder version, stating the same things, only nicer, like Mr. Walitt: https://www.psychologytoday.com/blo...c-fatigue-in-the-context-the-history-medicine

Please cancel this speaking engagement.

And also it would be greatly appreciated if you would launch an inquiry into why, despite handing out $2.8 billion in RFAs, the NIH failed to allocate a single dollar to any RFAs pertaining to ME for the fiscal year ending September 30, 2016. Goodwill and trust are hard earned, and are eroding fast.

 

[Stewart]

So if Shorter wasn't invited by the ME/CFS Special Interest Group, who was it that invited him? And what does that person or persons hope to achieve by having him share his ill-informed opinions about CFS with NIH staff?

I appreciate Koroshetz taking the time to respond to patient concerns, but frankly I have more questions now than I did to start with.

 

[Yogi]

So if Shorter wasn't invited by the ME/CFS Special Interest Group, who was it that invited him? And what does that person or persons hope to achieve by having him share his ill-informed opinions about CFS with NIH staff?

I appreciate Koroshetz taking the time to respond to patient concerns, but frankly I have more questions now than I did to start with.

Yes need to chase this up and find out who " incorrectly invited" him? How does one do that?

 

[Denise]

Just as a heads up - Not everyone has been following this concern. And Koroshetz's response does not mention Shorter by name. I therefore think it is likely that there will be questions in the community (among patients, advocates, researchers, clinicians, etc.) about who the letter refers to.

 

[akrasia]

I appreciate Koroshetz taking the time to respond to patient concerns, but frankly I have more questions now than I did to start with.

I thought the letter was disingenuous condescending boilerplate, a potted lesson in how science ostensibly goes about keeping a question open and a tactic to calm without revealing anything of substance.

While I still don't feel it's time to head for the exit, or that this is prologue to an embrace of a view compatible with the BPS nonsense, it is troubling. I don't think it was an accident that he ended up on the M.E. speakers list.

 

[Karena]

@Wildcat - well, I came up with this - I'd appreciate any comments from you or anyone else. I just saw Koroshetz's non-response to Jenny Spotilla - they are clueless, or worse. Let me know if you think this is too inflammatory. FWIW, Jenny's letter was perfect, so I cannot imagine getting any better response to mine:

Great letter, Mary! I don't think it's too inflammatory.

Maybe I'm just having a stupid day, but I don't understand where Koroshetz is coming from. It sounds like a lot of gobbledygook and double-talk to me.

Shorter is a social historian (http://www.dredwardshorter.com/bio.html). How do his observations and beliefs benefit the "scientific enterprise" NIH researchers are engaged in? Does "inclusivity of scientific thought" mean NIH will listen to anyone who professes to have an opinion on CFS/ME? Maybe they'll invite a painter or poet next time

It's so discouraging. Can't the NIH just spend my tax dollars on real scientific research into this terrible disease?

 

[caledonia]

Great letter, Mary! I don't think it's too inflammatory.

Maybe I'm just having a stupid day, but I don't understand where Koroshetz is coming from. It sounds like a lot of gobbledygook and double-talk to me.

Shorter is a social historian (http://www.dredwardshorter.com/bio.html). How do his observations and beliefs benefit the "scientific enterprise" NIH researchers are engaged in? Does "inclusivity of scientific thought" mean NIH will listen to anyone who professes to have an opinion on CFS/ME? Maybe they'll invite a painter or poet next time

It's so discouraging. Can't the NIH just spend my tax dollars on real scientific research into this terrible disease?

You're not having a stupid day. You nailed it - the letter is a classic example of government doublespeak, aka gobbledygook aka bureaucratese. It's confusing on purpose and intended to deceive. Unfortunately, the government runs on this type of language and you will probably never get a plain spoken answer from them.

https://en.wikipedia.org/wiki/Doublespeak

William Lutz video

William Lutz article
http://www.cusd80.com/cms/lib6/AZ01...318/The World of Doublespeak-William Lutz.pdf

 

[Forbin]

"In fact the study of one condition not infrequently leads to clues to the treatment of another in totally unpredicted ways."

Yes, I could see how the study of ME/CFS might eventually lead to promising treatments for those who continue to stubbornly deny the biological reality of the disease.

 

[Mary]

I realized what was bugging me about the letter I drafted - the reference to the Klan - it's inappropriate to compare Shorter's stupidity to the reign of terror inflicted by the Klan, so I'll change that, will think of a better analogy.

 

[AndyPR]

Ron Davis (and Janet) aren't impressed

https://twitter.com/i/web/status/794647737358643201