On Thursday, November 3, Dr. Maureen Hanson shared a screenshot revealing a planned talk on November 9th at the NIH by the historian Dr. Edward Shorter titled “Chronic Fatigue Syndrome in Historical Perspective.”
Dr. Shorter has a long history of treating patients with ME with disdain and denial, as illustrated in an article he wrote for Psychology Today after the IOM report was published last year. He described the IOM report as “valueless, junk science at its worst” and described the IOM committee as a “wacky committee” that “the CFS patients’ lobby has roped, captured, and hogtied.” In the article, Shorter mentioned his 1992 book From Paralysis to Fatigue: Psychosomatic Illness in the Modern Era and wrote, “Nothing has changed since then in scientific terms. There have been no convincing new studies, no breakthrough findings of organicity, nothing. And there never will be.” He stated that many patients suffer from a “delusional somatization, the unshakeable belief that something is wrong with their bodies rather than their minds.”
[Shorter] described the IOM report as “valueless, junk science at its worst” and described the IOM committee as a “wacky committee” that “the CFS patients’ lobby has roped, captured, and hogtied.”
#MEAction advocates immediately wrote to Vicky Whittemore to express outrage about the planned talk. They made it clear that his defamatory comments and publications spanning decades make him a completely unacceptable and offensive presenter.
Jennifer Spotila wrote a powerful open letter to Dr Koroshetz. Many other advocates and organizations, including the Solve ME/CFS Initiative and Cort Johnson, also contacted the NIH or wrote about the offensiveness of the planned presentation.
Although the NIH removed the event from the event page shortly after the tweet, they do not appear to have cancelled the talk and have not responded directly to #MEAction’s emails. The head of NINDS, Dr. Walter Koroshetz, did email members of the community on Friday morning to explain NIH’s position, making it clear that the NIH had no plans to cancel the talk. In his email, Dr. Koroshetz wrote that “We know so little about the biological causes and nature of the disease that inclusivity of scientific thought will be critical to our success.” However, Dr. Shorter is not a scientist but a medical historian who has consistently denied that ME has any biological cause. He has dismissed the biomedical findings that have been documented in published research as “microfindings” and denied the very possibility of future findings. His work stands in sharp contrast to the previous four presentations about ME/CFS at NIH, which have been done by respected experts in the field. There is no conceivable rationale for having a disease denialist present his antiquated, baseless, and biased viewpoint.
Dr. Ron Davis contacted Vicky Whittemore today to express his opinion regarding the planned presentation. Afterwards, he wrote that if the NIH doesn’t dis-invite Shorter he “will advocate for a congressional investigation as to why they invited him.”
In response to Dr. Koroshetz’s response to her open letter, Jennie Spotila responded with another powerful post titled “Enough is Enough.” Her sentiments represent the feelings of many in the community who have been stigmatized and marginalized by attitudes such as those of Dr. Shorter for far too long.
This comes in the wake of a superficially positive open conversation between the NIH and patient advocates, in which Koroshetz emphasized the importance of patient involvement in NIH research every step of the way. “We can’t do this without the support of patients,” he stated.
Patients and allies have been discussing protest options if NIH is to go forward with the presentation, including showing up in person at the presentation to protest. Please join us in discussing ideas at https://www.facebook.com/groups/1089624171080402/.
13 thoughts on “Shorter invited to NIH to share perspective of disease denialism”
Well said!
“However, Dr. Shorter is not a scientist but a medical historian who has consistently denied that ME has any biological cause. He has dismissed the biomedical findings that have been documented in published research as “microfindings” and denied the very possibility of future findings.
His work stands in sharp contrast to the previous four presentations about ME/CFS at NIH, which have been done by respected experts in the field. There is no conceivable rationale for having a disease denialist present his antiquated, baseless, and biased viewpoint.”
His views belong in Greek mythology not in modern day understanding. I do not have toxic ovaries or caustic tongue. I have truth, honesty and integrity. I firmly believe are still learning and this man wants to stop that process!
I am really wondering what internal politics are going on inside NIH that have caused this to happen. Frankly, that’s what it feels like to me…… there are people working on our behalf to move things along (like Vicky Whittemore), and I wonder whether this guy was invited to appease those in NIH who (we know) still think that ME is psychosocial. That’s what I”m reading in between the lines in the letter from Koroshetz. The trick is what to say and how to say it when we respond to this ridiculousness, so that it supports those within NIH who want to help us, and neutralizes those within NIH who seek to dismiss us and demean us. Thought Jennie Spotila’s letters were right on.
Does NIH have a position on misogyny? Shorter derides CFS (doesn’t really mention ME) as a delusion woman are attracted to. Here are some of Ed Shorter’s blog posts on women and mental illnesses, as well as CFS:
https://www.psychologytoday.com/blog/how-everyone-became-depressed/201502/depression-role-women
This one was already mentioned in the text, but read it again through the lens of a male with very outdated attitudes towards women:
https://web.archive.org/web/20150220123853/https://www.psychologytoday.com/blog/how-everyone-became-depressed/201502/chronic-fatigue-syndrome-is-back
Shorter wrote:
“What drives this process? Patients hate having a diagnosis that nobody believes in; they dread the words, ‘Madame, it’s all in your head.’”
Clearly he sees this as an affliction of women.
Just read Dr. Shorter’s article in Psychology Today “Chronic Fatigue is Back!” What an insult. Can’t believe a Ph.D. can write such coarse and crude drivel. And NIH invites this man to speak to them about something that he knows nothing about? I’ve just typed out a two page retort to Dr. Shorter and will put it in the mail on Monday. Feel better already!
This article was hurtful to say the least. I remember the year the day the place I suddenly became I’ll, very I’ll. I have newspaper articles from 1987 reporting on a strange illness affecting people all over the country. After 30 years of being I’ll I am disgusted to hear the NIH would listen to this man . I was an active woman working for the VNA in my community, a job I loved . I’ve missed so much of life…not because I think I’m sick psychologically. I keep praying scientists will discover what causes ME so people like Mr. Shorter will be silenced.
Ed Shorter is an equal-opportunity slimer, and for an historian strangely ignorant of past events. E.g. In one essay he dismisses PTSD as a cultural construct arising out of the social conflict that surrounded the Vietnam war.
Uh, duh… seems a few chaps left the trenches of World War I with something called shell shock. Ditto World War II, and Korea. In fact, I’m willing to bet that with a little effort one could dig up examples of something approaching PTSD all the way back to Caesar in Gaul. Or ancient Greece. Or Joshua, who fit da battle of Jericho. Lotta guys musta left starry-eyed after those walls came tumblin’ down.
The following is a suggestion from Ron Davis to people who have asked him for advice on what they can do:
“Keep tweeting, emailing and calling Koroshetz and Collins. Let them politely but firmly know how devastating this will be to the ME/CFS community and how inappropriate it is for NIH to have such an opinionated man who is not a scientist and not looking at data speak there. This is not a scientist that will spark ideas that they should listen to. This is a man who has a ridiculous uninformed opinion that data has shown to be wrong long ago. Use my words if you like!”
Been tweeting all day.
I suggest that he is behind on current research, so did call him today Sunday for 2 minutes.
He says he is open minded, no hard reproducible data on biological basis, just many one off studies with poor reproducibility. So I did send him PNAS Naviaux reference and mentioned Maureen Hanson work, Griffith work, Japanese work etc that find biologically major biochemistry changes. Suggests in next two days, people send him the most definitive and most recent biochemical references you know.
1) Either he will take the opportunity to read these, or
2) realize he has pulled the tigers tail, and may want stop expounding old ideas in light of new data.
Suggest e-mails him your best technical references to:
[email protected]
and other address to be sure he get this at:
[email protected]
or Tweet to:
@DrEdwardShorter
He is a Harvard Ph.D and may have contributed over decades, but now behind on the current R&D etc. and might be locked in opinion, but hope we can enlighten him by sending current refs.
We did talk for two minutes, then he said he had to go since preparing for NIH trip, so this trip is still on. I did then e-mail him asking who invited him to NIH, but have not received reply
I sent him this document: https://m.box.com/shared_item/https%3A%2F%2Fapp.box.com%2Fs%2F9s4coexxtys5bnz33i6gvqqygu67ex5o
Please, nobody else do this! He will just use it to make it look like he’s up-to-date. (Tho if we’re lucky, he’ll trash the research)
You can’t educate a misogynist. Certainly not in two days.
Unfortunately, as we know, there are lots of cold hearted dinosaurs like Shorter still roaming the earth and showing little regard for the voice of those suffering from me/cfs.
As long as we allow so-called experts the power to determine the legitimacy and acceptability of our lived experience, folks like Shorter will continue to pose a much greater threat then denialism. The threat is to civil society and the rights of man. If the only definition of what is real or what matters is determined by a few select individuals- then we are living in a Brave New World where Big Brother tells us not only what we can and cant have but will tell us if our experience is real or not. And is quite remarkable to me how a narrow minded, overconfidant and undereducated individual like Shorter is so brazen to believe he alone stands in the light of nature and that those who disagree are stuck in Plato’s cave. If that isnt Chutzpah I don’t know what is. He must have been a Doberman Pinscher or Rottweiller in a previous life. Lets hope soon some alien religion beams him up t their spaceship and takes him to a planet where he belongs.
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