The following text is an open letter that I sent to Dr. Walter Koroshetz, Director of the National Institute of Neurological Diseases and Stroke.
A plea for sanity, respect and science
Dr. Koroshetz,
I write to you tonight to personally ask for your intervention for the sake of people with ME/CFS.
Today, we learned that Dr. Edward Shorter has been invited by the ME/CFS Special Interest Group to present an historical perspective on CFS on Wednesday, November 9th at NIH. I ask you to reverse this decision.
Dr. Shorter authored a commentary on the IOM’s report and diagnostic criteria for ME/CFS in February 2015. In his original article, he said the following:
- The IOM committee was “a committee that the CFS patients’ lobby has roped, captured, and hogtied.” The IOM report was an “embarrassment . . . valueless, junk science at its worst.”
- “Nothing has changed since [1992] in scientific terms. There have been no convincing new studies, no breakthrough findings of organicity, nothing. And there never will be.”
- “[B]ringing militant advocates into such a discussion is equivalent to a committee of geographers that includes members of the Flat Earth Society.”
- “[I]n the several public hearings the CFSers appeared in mass to pour out their tales of woe.”
- “The public hearings were a circus, with moaning and groaning victims right and left.”
- “[W]hat many of these patients have is a kind of delusional somatization, the unshakeable belief that something is wrong with their bodies rather than their minds.”
Psychology Today rightly pulled this highly offensive and wildly inaccurate article. Five days later, Dr. Shorter published a heavily edited version of his opinion, putting forth the same argument with less explicit insults. CFS is “a psychic epidemic,” and patients have “delusional somatization” or depression. “[T]hese illness beliefs may lead to disability, as people obsess about their symptoms, entrench themselves in the conviction of organicity, and become disabled.”
Dr. Shorter’s opinions have no place in discussions about and research into ME/CFS, a disease which the IOM and the NIH’s P2P Panel reports declared unequivocally to be a physiological disease, not a psychological disorder. There is nothing to debate here; there are not two sides to this argument. NIAID would hardly invite Dr. Peter Duesberg to speak on the question of whether HIV causes AIDS. Nor would NICHD invite Dr. Andrew Wakefield to argue that vaccines cause autism. Discredited hypotheses should not be cast as valid views in the face of data that disprove them.
Just yesterday, you addressed people with ME/CFS during an NIH telebriefing. You emphasized the importance of partnerships between researchers and the community. You assured us that NIH sees our involvement as critical for success. Surely you must understand that an invitation extended to Dr. Shorter is a slap in the face to people with ME/CFS. You cannot expect trust, cooperation and partnership from the very people that your invited speaker calls “militant,” “delusional,” and “moaning and groaning victims.”
Dr. Koroshetz, please, if you sincerely want to move ME/CFS science forward, Dr. Shorter cannot be a part of that effort. If you are sincere in your request that people with ME/CFS work with you, then do not insult us by listening to a view of our disease that has been thoroughly discredited by NIH-funded science.
I ask you, Dr. Koroshetz, to lead ME/CFS research forward, not backward. I ask you to lead by example, and accord people with ME/CFS the same respect that you show to people with epilepsy or Parkinson’s disease. Follow the conclusions of the IOM and P2P reports. Follow the data. It is time to set aside the psychogenic hypothesis of “chronic fatigue” and step firmly forward, towards the answers that await us in biomarker and pathophysiological research.
I am ready to partner with you and any scientist who will follow the data forward. Will you partner with me?
Sincerely,
Jennifer Spotila
Wow, that’s outrageous!
THANK YOU for sending this excellent letter!
I had not heard about this. It is unconscionable that Dr. Shorter would be asked to give his input on ME/CFS. It is truly an unspeakable insult to all of us with this disease.
Thanks for constantly holding their feet to the fire!
If this were psychosomatic, I wouldn’t have gotten it in the first place! Why would a Princeton physics researcher who had FINALLY gotten to the physics side of the Princeton U. Plasma Physics Lab’s research, and was digging deep into computational physics where I was doing useful work in the nice niche between experimentalists and theoreticians, suddenly pick up a psychosomatic illness at a conference where I was presenting a paper? And mess up the next 27 years of my life – so far?
ALL of us want to go back to work, to life, and are SICK and can’t. We are not crazy – ask the people who know us well.
It makes me very unhappy to see things like the PACE ‘trial’, and this guy speak as an ‘expert.’
Keep it up.
How many thousands of £££’s Sterling do you think it would cost to set up a 52 seater Restaurant, with Wilton carpet, French Voile curtains (still have them, they were such good quality) a £1,800 dishwasher, and banquette seating for 25, and hand-made oak Spanish cushion seats/back, studded, at £39 each,and Oak tables… with turned central stands, ceiling lamps, screens for privacy, curtains, antique prints, Water boiler, steam injector cola dispenser…… need I go on ???? and 8 refrigerators, wine rack, 2 x 16 cu ft freezers, a butchers meat slicing machine. Shelving for stock, work surfaces, 6 ring gas range, Bain Marie, electric double griddle, Valentine fryers at £750 each 100 knives forks, etc. 100 cups and place settings, Teapots, trays, for afternoon teas. Pastries trolley, glasses, place mats, lavatories, storage heaters, potato peeler…….Cash register that cost £785 ,…… .I am sure I have forgotten something. all paid for in 1977, and have to sell it all because you could not work again…….
Thanks for writing this; I’m sorry you had to.
I glanced at Shorter’s work while writing my thesis, but could not bring myself to include his views in the paper. He makes Wessely look thoughtful.
What Joe said.
Inviting Shorter to address the NIH is an absolute outrage!
MEAction: Can we get a petition to stop this?
Thank you for the great letter, Jennie!
“Epidemic Hysteria Medical historian Edward Shorter of the University of Toronto calls related cases of psychosomatic illness “epidemic hysteria.” As a historian, he finds the GWS [Gulf War Syndrome] phenomenon tragic yet “fascinating.” Says Shorter, “Just as cholera is spread by water droplets, epidemic hysteria is spread by the media.” http://reason.com/archives/1997/03/01/gulf-lore-syndrome/6
One can find info on Dr. Shorter’s history by starting a search in the UCSF Big Tobacco Legacy Library.
I agree with the comments above. Thank you for your watchdog work and for an extremely cogent letter. I would be willing to sign a petition to have this man’s talk cancelled. The type of presenter they ought to be inviting is Dr. Peterson or one of the others who has concentrated on this field, knows it well, and is still making useful contribrutions.
Well done!
Science cannot move forward until illnesses stop getting psychologized!
“Shorter’s thesis is that since the dawn of modern medicine, sufferers of psychosomatic illness unconsciously produce symptoms of whatever disease happens to be fashionable among the more delicate members of the upper-middle class. Their behavior is reinforced, Shorter says, by pricey ‘society doctors’ who indulge them by accepting their patients’ self-diagnoses.” http://articles.latimes.com/1991-12-10/news/vw-44_1_psychosomatic-illness
Today I Learned: My from a Working class family poor as a pauper body and brain think they are “Upper Middle class”. O.o
Um…. They do realise most of the people with this diagnosis are actually poor right? Oh, wait, we just don’t know our place!
I’d much prefer to be working rather than having to rent part of my home to a lodger as I’ve been all but abandoned by the health services and the disability benefits system. But apparently I just don’t know my own mind and I’m just “delicate” and being reinforced by the NHS who agree I have this illness even if they treat it appallingly!
I’m to tired to rave as much as I want too about this.
Thank you !
Thank you for your eloquent letter. I don’t think mine would’ve been so nice. I have yet to meet one PWME (person with ME) that enjoys losing their job, friends, family, ability to think or talk because of cognitive impairment or lack of energy to do so. And live(?) with 3-5 different active viruses that are proven by lab tests. Or low natural killer cells also proven by lab test. I could go on and on But out of energy to think or even sit up Any longer. Oh, yes I just love that i am getting out of having a life and live my life out of my bed. DO NOT LISTEN TO THIS OUTDATED, UNETHICAL, INHUMANE PERSON IN REGARDS TO M.E./CFS.
Thank you on behalf of all of us with ME for this thorough and carefully crafted letter. It must have taken a lot of time and work on your part. If anything can stop the travesty of having this doctor address the NIH, this letter will. I’m deeply grateful to you, Jennie.
Toni
I second this. Thank you Jennie.
Yes, thank you from me and from all of us too sick and tired to keep up with these kinds of developments.
Well said, Jennie and Toni. Many thanks to you both.
Jennie, thanks again for keeping a watchful eye on all that is going on, and for spotting this and giving such an excellent reply.
The really appalling thing is that this “hysteria” notion has gotten such a firm hold, in spite of its many recorded disastrous results; for a while MS was known as “hysterical paralysis,” and some years ago a town in Cornwall UK was hit with an epidemic of disease after problems with the water supply; many became seriously sick, and one woman later died. S. Wessely and A. David wrote a paper on the episode, in which they said that “the perception of normal and benign somatic symptoms (physical or mental) by both subjects and health professionals was heightened and subsequently attributed to an external, physical cause, such as poisoning.”
Which is exactly what it was; 20 tonnes of aluminum sulphate had been accidentally dumped into the water supply. They had been poisoned. One woman later died, and the coroner stated that the death might have been a result of the poisoning.
In time this misinterpretation of ME will join the ranks of those other great pyschiatric inventions, like the masturbation theory of schizophrenia and the “refrigerator mother” theory of Autism, supported by Bruno Bettelheim as recently as the 1970s, I believe. In case it interests Shorter, I was hit by ME at the age of 74 as a male retired academic all set to continue my active and enjoyable life style of research, kayaking, cycling, and so on. I am not “among the more delicate members of the upper-middle class,” nor are most of the members I know in the local support group. Nor are our behaviours being reinforced by “pricey society doctors”–in fact, most of the doctors we see don’t have a clue. Like Edward Shorter, though as I understand it he is a historian and psychologist but not an M.D. doctor.I believe he has written on some of the many defects of the DSM V, which sounds good, but I see no excuse for his treatment of ME, and for the NIH to call him in for his account of the history is outrageous, as you say.
Thank you Jennie! Very well said!
Jennie, thank you for this thoughtful, excellent letter! Are there other things we can do to try and stop this?
Is there any way some of these eloquent, thoughtful comments could be forwarded to Dr Koroshetz?
As always, Jenny, you are spot on. Thank you so much.
Thank you Jenny.
My spirits soared to realise we PWME have such an intrepid, eloquent, cogent and fact-based advocate to be the voice we would all like to have.
You are a star!
His name is no longer on the list. https://irp.nih.gov/news-and-events/events
Whether he was uninvited or his name has simply been removed but he is still going to be speaking, I don’t know.
Interesting development…..
I wonder when and why that changed (the cache link in the post is from 1:46pm on 3 Nov.).
Thank you so much! But this is so upsetting that I am moved to tears.
What’s with all of the promises of Dr. Francis Collins of the NIH to take ME/CFS seriously? This is going backwards if this “doctor” is allowed to speak and spew
this horrendous outlook on our disease?
I would love to go to a museum, movie, concert, play. I live in New York City and can’t go anywhere to take advantage of its cultural offerings. I can’t travel, not even to another borough or even uptown. I’m trying to figure out medical appointments to doctors who are near my house. Last night as I worked on some financial papers, I “forgot” how to add long numbers! It was shocking.Bah
And I just almost fell down buying groceries as I was so tired.
This is just an outrage. It really is, after it has been well–publicized that so many people are seriously sick with this disease — even covered in the Washington Post, the NY Times, the Atlantic and online in so many blogs.
And to insult the IOM panel and its report is another outrage. Finally, a government-appointed committee took this disease seriously and issued real findings, a progressive step. And this guy insults it and dismisses the report.
I hope that your excellent letter causes this “doctor” to be stopped from speaking. I would hope we could do an email and phone call campaign in addition, if needed.
I’m for phone campaigns as I’ve seen them used effectively in a number of situations.
I”m hitting my 31st anniversary of having ME/CFS, which I got following a terrible case of Epstein Barr Virus, which showed in blood tests, and in symptoms found by my doctor.
And I agree that I’m not “upper-middle class,” worked hard to pay the bills when I was able to work.
This guy’s attitude is an insult to every person sick with ME/CFS. I hope your letter and other pressure stops this travesty from happening.
Thank you so much for staying on top of this and for writing your letter. I’m too busy imagining myself actually ill to keep up with what’s going on. So I’m immensely grateful to you for everything you do.
Harry Truman has been quoted as saying, “I never gave anybody hell. I just gave them the truth, and they thought it was hell.”
I think you’re doing the same.
Short, sweet, and to the point. Thank you for your ongoing advocacy efforts.
Jennie,
On behalf of my sane, bright, athletic, active, life loving, fun loving daughter THANK YOU. She is at home in a wheelchair and my husband and I are caring for her. ME has taken her life away.
Thank you for this excellent letter. I hope they listen.
Excellent letter, thank you.
You may not like Dr Peter Duesberg’s criticism about HIV and AIDS but the words of Kary Bank Mullis PCR Nobel Prize winner should settle the matter.
Words do not settle things in science. Data do. Dr. Mullis did not win the Nobel Prize for work on HIV/AIDS. He shared the prize for improving PCR. He has done no research on HIV/AIDS, and insists that climate change is a government lie. He settles nothing.
Jennie
That is one brilliant letter. You are always cogent and on the point, but this one excels.
I do hope the fact that his name has been removed from the speaker list is significant. Thank you for all the advocacy work you do on our behalf. So appreciated.
Gill
Thanks, thanks, thanks. Jennie, you are a marvel. And thanks again.
Thank you, thank you, thank you.
Holy cow. As bad as one thinks the mindset is regarding ME/cfs in the HHS – in this case the NIH – it is even worse. Even if this person is now off the list for the Special Interest Group, the fact that this man was even considered tells you all you need to know about how much they in the NIH know about the disease. As I said in response to the last blog, “I still think that most of these people in the NIH, CDC, and FDA do not really understand the disease and its horrific toll on people. They understand breast cancer, pancreatic cancer, MS, heart failure, etc. – what they are and how they can ruin lives. They do not have a real comprehension of ME, and so, no real sympathy or sense of urgency.” But this choice – removed or not – makes my statement a huge understatement.
Thank you, Jennie. Almost all of us would be without such vital information if not for your efforts and tenacity.
btw, IS he really off the list? If not, a huge community response against that appointment is called for.
Oh my goodness, this awful guy sounds like a sort of Donald Trump of psychology. What a nightmare.
Thank you so much for your letter, let’s pray it bears fruit.
Thank you, Jennie, for this excellent letter. I am extremely grateful for all that you keep track of and all that you do for us. It is outrageous that any of this needs to be done at all. Furthermore, it is immoral that it needs to be done, year after year, after year, after year, after year, as the decades roll on.
Well people need to step up and strongly speak out for us. I hope that the IOM panel, advocacy organizations, researchers and others will take a strong stand on this. We are not going backwards! We need real leadership to take us forward. Celebrities also need to step up and speak out for us too. This shouldn’t perpetually fall on sick, often poor patients.
People need to do their jobs; or be relieved of them. People need to stop blaming patients for everything; from being sick, to it being our fault that we haven’t gotten our researchers to write grants that the NIH will approve and fund. We are not the scapegoats of society. All we want is real, urgent, immediate, quality research and real, urgent, immediate, quality, care commensurate with disease burden, just like any other disease.
Thank you for writing this letter, Jenny.
Laurie P wrote:
“…Well people need to step up and strongly speak out for us. I hope that the IOM panel, advocacy organizations, researchers and others will take a strong stand on this (…) This shouldn’t perpetually fall on sick, often poor patients.”
Quite so.
Let us not forget that in April, this year, James C Coyne also gave a platform to Shorter and promoted Shorter’s books and his Psychology Today hosted blog:
https://jcoynester.wordpress.com/2016/04/30/experts-weigh-in-on-suzanne-osullivans-commentary-on-imaginary-illness-in-the-lancet/comment-page-1/#comment-2087
It’s important to think about who invited Shorter to speak and what this invitation says about current NIH policy. Perhaps we can get a clue from the ME/CFS Special Interest Group’s very own webpage:
“The ME/CFS SIG seeks to provide a forum … about ME/CFS. It is open to all interested intramural and extramural investigators seeking to learn more about ME/CFS. …
The SIG is led by Avi Nath, the NINDS Clinical Director and Primary Investigator of the Intramural ME/CFS initiative, and is moderated by his Lead Associate Investigator, Brian Walitt.” [1]
Please especially note that the moderator is our “old friend” Brian Walitt. Unless Walitt is completely incompetent at everything, he is most certainly familiar with Shorter’s views. So Walitt is still married to the idea that our illness is “psychosomatic”, and desires to spread his poison throughout the group of NIH researchers who are supposed to participate in the Clinical Center intramural study.
This invitation is just one more reason to oppose any NIH study that includes Walitt.
It is also clear that the 30 year NIH policy of non-research has not changed, and will never change until forced to by civil disobedience and/or court action.
[1] http://mecfs.ctss.nih.gov/sig.html
Thank you for another eloquent letter, Jennie. Dr. Shorter’s lack of empathy, compassion or knowledge about ME/CFS is breathtaking. A google search is all one has to do learn about the physiological basis of ME/CFS. His article was a long, gaslighting diatribe that has no place ANYWHERE, let alone in the realm of ME/CFS research.
fwiw – The following was sent as a mass email by NIH (4 November 2016)
“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”
The question remains – was Shorter EVER on the list?
Dr. K. should understand that, after 30 years of neglect, misspent funds, insulting attitudes, empty promises (and that’s just from the HHS), this community is APPROPRIATELY sensitive to continuing disparagement. And having someone on the study team with a published history of bias (Walitt) is not going to help but can only continue fostering distrust, no matter how much Dr. Nath thinks of him.
Thank you, thank you, thank you!
Thank you Jennie for a beautifully written letter.
NIH wants to “learn” about this illness and arrange just ONE presentation per month….at this pace, it will take them couple of years just to “learn”.
We, patients, have two issues…1. no therapy/cure and 2. our doctors don’t believe us, which sometimes can be more painful than the symptoms.
If NIH/CDC really believes our illness, they can fix the no. 2 issue quickly by contacting all practicing physicians and ask them to take it seriously.
I seriously believe that the breakthrough for this illness will come from outside NIH
first.
I think they should REQUIRE a one day conference for nurses and Drs to take re: ME. That’s the least they can do. Course then they have to have the right Drs to teach them also. And have some PWME there to tell there story as well.
Thanks again, Jennie.
And, agree that scientific data is needed here. And that requires funds, which the NIH well knows. And inclusion of researchers who have found biomarkers and symptoms, including about changes in the brain.
Thank you very much for writing this, and bringing this to our attention. How Shorter’s simplistic, outdated, unfounded, vicious opinions can be characterized as “scientific thought” is beyond me. I’d like to email Dr. Koroshetz as well, but I cannot find his email address on his NIH/NINDS bio page. Could you point me in the right direction?