Disparaged Speaker to Present at NIH Next Week

Yesterday, deeply troubling information was discovered on an archived National Institutes of Health (NIH) webpage. A lecture titled “Chronic Fatigue Syndrome in Historical Perspective” is scheduled for Wednesday, November 9, to be presented by the controversial and inflammatory history professor Edward Shorter, PhD.

A professor of psychiatry and history at the University of Toronto, Shorter is an outspoken skeptic about the biological nature of ME/CFS. He has referred to the disease as both a “psychodrama” and a “psychic epidemic” and called the findings of the Institute of Medicine’s report on ME/CFS last year “junk science.”

Shorter’s stance and use of degrading language toward patients (such as labeling them “moaning and groaning victims”) has caused his opinion pieces to be removed from public forums.

SMCI President Carol Head has reached out directly to NIH officials to strenuously object and seek removal of this speaker who presents a theory that has no scientific validity and is deeply damaging to ME/CFS patients.

Today, Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke (NINDS), who also heads the Trans-NIH ME/CFS Working Group, wrote to the ME/CFS community to address the concerns raised by ME/CFS advocates about this scheduled lecture.

Dr. Koroshetz emphasized the NIH’s commitment to reducing the burden of illness and the NIH’s effort to encourage a free exchange of information from many scientific opinions.

As of the afternoon of November 4, Shorter is still scheduled to speak—despite the recommendation from ME/CFS specialists at the NIH that he be disinvited. The NIH has not yet returned our calls to clarify the situation. SMCI will continue to monitor the situation closely and expresses the following:

Why we are deeply concerned

  • The idea that ME/CFS is a psychosomatic illness has no basis in rigorous scientific research and should not be offered up for NIH consideration. We support valid science, and inviting a speaker whose ideas are in direct conflict with accepted science is damaging.
  • The lack of engagement with and sensitivity toward the ME/CFS community to avoid mistakes, like this one, causes damage and mistrust of the NIH among patients.

Steps for NIH improvement

  • The NIH must accept and incorporate the IOM report findings that ME/CFS is a physical disease into its practice and approach and bring that stance into its programming.
  • The NIH must recognize the harm in stances already refuted by validated scientific findings and take an active role in repelling bad science, stigma, and misinformation.

SMCI will be reporting back to the community as we obtain additional information. We will not let this rest. Follow us on Facebook or sign up for our e-mail updates to stay in the loop.

November 4, 2016
  • Claudia

    This is the type of Neanderthal thinking commonly found in The Middle Ages. At one point in medical history, unseen entities that caused disease (germs) were also considered impossible. Oftentimes when medical “researchers” can’t figure out causation, they attribute the condition to psycho drama. It helps them save ignorant face.

  • shannah

    This is beyond ludicrous. What on earth is this man Dr. Koroshetz thinking? There is absolutely no way he can justify this no matter how far he stretches. This man Shorter speaking at this conference must be blocked. Dr. Ron Davis is threatening to call for a congressional investigation and I say it’s about time! We’ve had enough. I think we should also call for Dr. Koroshetz resignation! With a move like this, how on earth can he ever be trusted? It’s insanity such as this that has kept me imprisoned for over three decades! Enough Already!

  • Elle See

    Thank you for your endless work to raise awareness for people with ME/CFS.

  • Adam Wheland

    A congressional investigation is long over due. I’m not normally the militant type but I say we find anywhere on the internet we can sully Edward Shorter’s name. These people have been screwing the community for over thirty years. As far as I am concerned careers need to end.

  • Well done! The SMCI probably has more influence with the feds than any other organization – thanks for reaching out so quickly.

  • Two Simple Steps to Solve CFS & ME. 1) Halt HIV Spending. 2) Fund Gulf War Syndrome. Problem Solved. My NON HIV AIDS case goes up through the NIH, CDC, White House, WHO, to the UN. I testified federally in Washington-DC; sat on conference with the America Red Cross; have been flown out of the USA (twice now facilitated by the UN) to give my blood; and am published 35 times on 4 continents. Or simply google “NON HIV AIDS” and/or “CFS STRAIGHT TALK”

  • Luke

    Millions of everyday people.. doctors, lawyers, scientists, athletes, judges, authors, high flying executives, carpenters…people from every walk of life worldwide… claiming the same group of debilitating symptoms… and thanks to those explicitly physical symptoms are now unable to live anything close to a normal life. Not just severe fatigue.. but severe pain and severe sensitivity to light. The nervous system.. immune system… the human body… is incredibly complex and we know almost nothing about it… we have scratched the surface.. science recognises this fact. History itself shows every 200 years virtually nothing that was scientific 200 years ago is any longer valid. Its arrogant to say now that 2000 year long pattern is suddenly invalid and is different now because we have reached the pinnacle. Absolutley no surprise that this individual is a historian yet ignoring history with all the confirmation bias in the world…because.. hes a psychologist. There could be no way that there is many yet undiscovered physical diseases and complicated malfunctions of things like the nervous system or that technology is just incapable of identifying them yet.. could there! The history of science does not show example after example of technology not being advanced enough at the time to identify biomarkers… does it it! Simple logic shows that its possible to discover new things today with just available new machines and methods… that even a week ago were inpossible. Yet there could be no way today that a scientist could discover with new technology a new disease previously invisble without that technology. And history doesnt show that happening over and over again.. does it! Hey… a pretty a rational place to start would be millions of people worldwide all claiming to have their lives shattered by the same common physical symptoms… wouldn’t it? Nah… how about we just say its in there heads because we hold the psycological hammer to the cfs nail… and assert that science has discovered everything (implicit in their stance). Pathetic logic.. irrational.. arrogant… unscientific dogma… and damaging work by him and individuals like him. They think THEY are the rational ones.. the history of science.. science itself… shows the “rational” ones.. with popular beliefs.. are wrong. They may stagnate real science.. for who knows how long and prolong the suffereing of who knows how many millions.. us… but history will not be kind to these individuals and their irrational legacies in the long run. Its a shame for all of us living with these debilitating symptoms… because each day without a solution caused and delayed by the dogmatic unscientific ideas of these individuals… is another wasted day of our lives bound to a bed or lounge by our PYHSICAL symtpoms. The tide is turning today.. in fact.. i think history will say it has already turned.

    • JohnFabitz

      No idea why your response to my post was removed – put if you post something on You Tube please share.

      • Luke

        Hi i actually deleted it myself and then reposted it above as i hit reply in the wrong spot. So all good. Sorry for confusion 🙂

  • Tinga

    Of course this isn’t the first time something like this has happened and likely won’t be the last, but it is terribly demoralizing for those of us with ME/CFS to have to put up with it over and over again. Back in the late ’90s, there was actually a Senate Subcommittee which appropriated $12 million or so to study the disease by the CDC. The research organization for CFS at that time, CFIDS Foundation, started to inquire about what was happening with the research funding, but kept getting stonewalled. Finally, the facts came out — the person in charge had used the money for other purposes! My recollection is that some of it had been spent assuming the disease was psychological, but that may be erroneous. Here’s part of a news release of the time:

    Newsgroups: sci.med.diseases.lyme
    Date: 1999/05/14


    WASHINGTON DC – The Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)
    Association of America, Inc. today expressed its outrage at the results of
    an Inspector General’s audit of costs charged to the Chronic Fatigue
    Syndrome Program at the Centers for Disease Control and Prevention (CDC).
    The findings confirm the organization’s worst suspicions that money
    appropriated by Congress for research into CFS had been diverted into other
    areas and officials at CDC had attempted to cover up the diversion.

    “The findings included in the Inspector General’s report come as no
    surprise to us,” said Kim Kenney, CFIDS Executive Director. “We have
    suspected for quite some time that the funds we fought so hard for on
    Capitol Hill never made it to CFS research labs. This is a betrayal of
    trust — in medicine and government. Patients and their families are
    terribly angry at the CDC and demand action from the government.

    According to the report, during fiscal years 1995 through 1998, the CDC
    “…spent significant portions of CFS funds on the costs of other programs
    and activities unrelated to CFS and failed to adequately document the
    relevance of other costs charged to the CFS program.”


    The report goes on to say “…CDC officials provided inaccurate information
    to Congress regarding the use of CFS funds and have not supported the CFS
    program to the extent recommended and encouraged by Congress.”

    “Where is the trust? Where is the accountability? We were promised
    science, research and a high level of commitment to fighting this
    disorder,” added Kenney. “CDC officials went to Capitol Hill and lied to
    Members of Congress. Those were taxpayer dollars, not some CDC piggybank.”

    Several other items about this history can be found at this Google site:


    But all this — and now the news about Shorter getting a hearing at NIH and Dr. Francis Colliins’s budget containing zero funding for the coming year is yet more evidence of the lack of seriousness shown toward a disease that affects millions — and leaves those of us who suffer from it gravely discouraged. I greatly appreciate the work of Solve ME/CFS and whatever it can do to get more serious and correct coverage and research for the disease. Someone said to me recently, “Oh, if you only had a star of the quality of Michael J. Fox (who has of course worked tirelessly to support research in Parkinson’s disease) to get to work for ME/CFS. If only!

  • Kasha Dziewisz

    Wish I didn’t have to hear this anymore. I am just never even planning a viable treatment for ME in my lifetime beyond the use of stimulants like Nuvigil. I think a lot of other patient’s have like me, given up hope of ever being taken seriously. Does this Dr. Shorter realize that his opinion has infiltrated my own family so that my own mother and extended family believe that I am making it all up? Does he realize that my life is empty and alone because of him? My only salvation is that he has created a boatload of bad karma for himself that will take eons to wear off. He will be called to a higher court than the NIH. I hope they ban him from the conference. Age 57, now in year 26 of disability, and still waiting for a treatment for ME/CFS.

    • JohnFabitz

      This is exactly what I was thinking as I read this from my smartphone in bed last night. How could the NIH, of all places, give this guy a platform to spread his nonsense?

      All I could think of is the Climate Change Deniers Machine, Inc. who bring out their paid ‘scientists’ to deny the facts and confuse the public with simple explanations. That’s just great for the fossil fuel industry, but not too great for future generations who will suffer the consequences – or getting the government and world leaders to fund and promote solutions to the problem.

      I’m a a 64 year old male who first ‘came down’ with ME/CFS in 1982. It came on as a ‘flu-like’ illness that had me in bed, missing work, and wreaking in pain for over 2 weeks – and the symptoms at times improve but have never gone away. After 7 years of every test imaginable (some quote painful), 2 surgeries (for ‘deviated septum’, ‘tonsillitis’), and 2 biopsies (lymph nodes, liver ), and seeing over a dozen different doctors who witnessed my symptoms and had concerns for everything from AIDS to MS – I finally found a doctor familiar with the disease and had an extensive workup at The Cleveland Clinic by Dr. Leonard Calabrese, where I was diagnosed with CFIDS/Fibromyalgia in 1989.

      Throughout that time, and until 1994, I struggled to continue working – until it got to the point that I had been missing so much work from being sick that I was delinquent on bills and losing my home, unable to take care of my personal needs and still work full time – I just gave up on my career and filed for disability (which took another 6 years to win). No one gives up a blossoming IT career and job they love – and goes from a super-active social butterfly to a recluse – just for the sake of ‘faking’ an illness and going on ‘welfare’. My work ethics and history proved that wrong.

      In my early adult life I took two 2-week vacations every year and traveled the country with friends on camping, ski trips, and the like. I haven’t taken a vacation, nor had the energy to do so, in 34 years! I’ve learned to live with being ‘sick again’ for days or weeks at a time – but my biggest loss is coping with losing ‘my old self’ and the brain fog and cognitive problems – not to mention losing all my friends and no one in my family supporting me. That has turned me into, basically, a hermit – just so I don’t have to deal with them anymore.

      I have no idea how I’ve found the strength to stop myself from just ‘ending it all’ on numerous occasions – but it’s gotten to the point that I don’t see the expected cure coming in my lifetime – and reading articles like this only brings me back to those ‘dark’ times. Lord help us all.

      • Luke

        Replied to wrong comment

      • Clara Matthews

        Prayer lifted for you , I can relate to so much you said . I come from a working in healthcare , I’ve been blessed to have supportive dr’s who have assured me it’s not Depression or ” in my head.” Not making light of the seriousness of Depression at all but I remember when 1st diagnosed, I asked if it could possibly be that . Went to a psychiatrist on my own to be told I was experiencing situational depression ( grieving over losing my lifestyle ) but other than that which is normal was told depression was not the cause . I would gladly give up my disability check for my health & ability to return to work . I like you , just miss me , my friends have been kind but it is a very isolating as I rarely feel up to being out . Stay strong don’t give up hope . Days we feel alone but we are not . It’s a new normal of living chronically ill . Online support groups & online friends who can relate help ( & yes I realize they are days I’m not even up to that ) .

        • JohnFabitz

          Thanks for the kind words of encouragement.
          For years I too had supportive doctors. Then I moved from the Cleveland area to live with my brother in a much smaller city of less than 100K in NC. Initially there was a local CFS support group, however the only doctor who was taking CFS patients would not take any more Medicare patients. I did however find a wonderful psychiatrist who knew it was not ‘all in my head’ and helped me with the psychological issues – but he retired some 10 years ago. In recent years I have stopped even trying treatments or meds – as I’d been through them all and nothing really helped.

          When some dark days came upon me a few years back (after my brother’s death and since I’ve really been ‘alone’ with this), I asked my primary care physician to recommend a psychiatrist. To make a long story short, after taking 3 visits to even see the doctor himself, one of the first things out of his mouth was, “You don’t look depressed to me”. That was the last straw.

          I’ve come to the conclusion that few doctors or psychiatrists, believe this to be a legitimate disease, or anything other than psychosomatic – even if they vocally profess to you otherwise. I have accepted that as a ‘normal’ reaction to something that they, as ‘professionals’, cannot figure out. It is what it is.

          I know that I really should spend more time in online support groups. But I sort of gave up on that years ago too, because there was never anything but people like me ‘whining’ about their condition and the loss of their ‘old self’ – which never did anything other than make me feel all the more helpless or hopeless. So all I do today is keep an eye on research developments, hoping to read something someday of a ‘magic bullet’ or ‘cure’.

          When I filed for disability I never expected to still be struggling through this over 20 years later.

      • Don Fiore

        Wow, I swear I could have wrote this.

      • Special K

        You have literally described my life. I was a social butterfly too. Loved talking and meeting new people. Had a great group of friends. I was a single mom and working as an RN. I woke up one day and my life changed. I had red, painful swollen hands and knees. My son was 7 at the time. Went to the ER and was told to see a Rheumatologist. The
        only lab that showed anything was my inflammatory labs. After seeing her several times, she finally diagnosed me with seronegative RA. I was put on all those nasty meds and they never helped. The fatigue and body aches were really overwhelming. I finally asked my Dr. to run an EBV. That was positive. So at that time, I had seronegative RA, Fibromyaliga and ME/CFS.
        My life was in shambles. I was on LTD from work. I began to lose my friends and my family is pretty toxic so I only had my mom to help me and my son. I began to file for disability. My job found a way to fire me so I lost my LTD. I had to borrow money from my mom and dad just to pay the house payment, car payment and other bills. I had nothing. My poor son was put the ringer. He had to learn to cook, clean, do laundry etc. I couldn’t care for him and I couldn’t care for myself. I was doped up on tons of medications. After about 1 1/2 years I lost everything I worked so hard for. I had always lived in apartments growing up and so buying my own house at 24 meant the world to me. I was devastated. I lost my pride. We had to move in with my mom until I received disability. Me and the kid were finally able to get an apartment. Isolation began to sit in big time. I had no friends to call or talk too.
        I have lost so much of myself over the years. I don’t like my life at all. There is no great outlook on anything except to wake up and do the same thing everyday. I can’t wait for it to be bedtime so I can at least take my meds and try to sleep. I’m a hermit. My dog is my best friend. I have no car because I let my son have. He’s 20 now. I have nobody but him. I’m so used to being alone and that is not a good feeling to have.
        Oh well, enough about me. I just really hope with this new transition going into the White House will have some positive effects (I think it’s going to be pretty bleak looking). Hopefully the NIH and others will continue to fight for us and fight for funding for research.

    • Luke

      These ignorant, cold hearted individuals could care less about the suffering they are causing real people. Their ignorance and arogance makes them clueless to the fact that they ARE causing so much suffering. I empathise wholeheartedly with you. Im a 32 year old male, 5 years into severe me/cfs. I just read this ignorant professors article from 2015…. he (and psychiatrists in general) have and push fabricated ideas that arent even close to the reality that is going on in our lives. Its like his article is talking about depressed people.. and lumps us in with them. It exudes ignorance. Fact… i was highly successful businessman… i netted over $500000 in 2012 after tax… i was not a malingerer focused on my health nor did i ever have any mental health history …i was not influenced by the community or doctors or media to “think” i was sick… i got the opposite of being told by drs that i was sick… i was told i was not sick…yet i had severe pain and fatigue. I was ignoring them and pushing and telling myself i was NOT sick. Sry it doesnt help….. the symptoms do not go away. im going to be making a podcast on youtube and rebutting his article and beliefs based on my own experience and logic. if anyone is interested ill post the link here.

      • Bradley Kimberley Anne

        I too had a very good job. I was making excellent money. I had plans to travel and a good retirement. I have worked since I was 14. I had five kids and fostered children. I got a pneumonia vaccine then pneumonia then did not get out of bed for a year. I went back to work on amphetamines for 7 months part time. Working 4 hours and sleeping another 18. I had to stop work. I have been diagnosed with ME. I was asked my symptoms and every single one lined up..every one. This is not in my head. I am not a malingerer. There are still days many when I cannot open my own eyes all day. On the days I have energy trying to clean and batch cook so I can live. I am not lazy or looking for attention. I want my life back! FIND some damn physiological answers! We do not need this psych guru undoing years of fighting for recognition that we are truly chronically physically ill!

        • Luke

          My health went down hill with regular bouts of severe fatigue for 2 years.. but i was still functioning and working (to rebut Edward Shorter i wasnt diagnosed and thus did not have my symptoms validated and also never read anything about me/cfs and thought i was going to recover soon and kept running my business KNOWING id get better.. im a fighter and nothing beats me! And there was no validation i was sick from anyone other than a few close family members and the way i felt… the same way you feel when you have an extreme hangover.. or are very sick with a flu…apparently id imagined these symptoms into existence though.. your migraine though Edward is a real one. Funny how when i presented myself to a doctor 10 years earlier very sick… because i felt very sick… and was diagnosed with glandular fever. Funny how my whole life whenver i had real symtpoms and presented myself to a doctor it was always something and showed in a blood test.. i.e. i never just inagined up some illness and decided i would show up at the drs… funny how i was always confirmed as being right.. but now i have suddenly imagined into existence symptoms when i had no history of doing that in the past). Then i got a tetnus booster vaccine and i literally got so sick the same evening and following days (like a flu) and i went from regular bouts of fatigue over last 2 years and difficult but not debilitating symptoms… to becoming housebound and chair bound from severe fatigue every single moment of my life. My symptoms changed over the next 2 years.. first with me getting severely senstive to light literally overnight and then a year or so later getting severe muscle pain to the point where i can spend no more than 60min.. if that.. in total each day on my feet or the pain gets so bad. I just thought id chime in since i saw you mentioned a vaccine.. and if one is a rational logical person who will hear facts.. you can only conclude the immune system and nervous system is involved in this disease. I hesitate to even mention my experience with the vaccine…. (due to many silly ideas floating around about them which i dont subscribe to) and no i do not think vaccines cause me/cfs.. i was already sick with me/cfs before i got one..albeit undiagnosed officially. But it triggered a much more severe case of me/cfs for me. I can just imagine Edward reading my post here and dismissing it sentence by sentence and sitting their all smug that he is so right about “these people”. How incredibly wrong he is. No biomarker is neccasary to see that me/cfs is real..today.. there are enough facts so that if you are rational person you can see that something more than people essentially imagining they are sick is at play here. It is no excuse to say it wasnt clear yet in 2016 as to whether this was a real disease. Saying that a disease isnt real because no biomarker has been found means that the 1000s of other diseases that exist in this world never exisited before a biomarker was found… which is irrational. All the other facts… namely patients presenting with common symtpoms worldwide… is enough evidence. There is enough evidence that this is a distinct disease.. and sufficient research and funding are needed!

      • Special K

        Luke, I agree with you all the way. I am 42 and began to feel sick when I was 28. I was an active, healthy registered nurse. I woke up one day and my life changed forever. I would love you have a link to your youtube discussion! I don’t know how this forum works but if you ever need to talk feel free to message me anytime.

  • Kasha Dziewisz

    Here is Dr. Shorter’s email address: history.medicine@utoronto.ca Tell him, like I just did, how he has hurt the ME/CFS community in the US.

  • Tracee Arsena

    And the majority of us were very busy, active, hard working people before being stopped short by this. People don’t just decide to stop all of that. It’s not in our life plan to lose jobs, money, friends and family relationships, along with our pride. I hope if this awful excuse for a doctor shows up, he receives the welcome he deserves.

  • George

    Thanks for fighting for us. This isn’t a person with a scientific difference of opionion, this guy is all opinion and no science.
    Extremely disappointing that the NIH is having him speak.
    Presumably he is behind the Canadian government rejecting a grant application relating to biomedical research.

  • Megan

    Wonderful. Who’s next — Andrew Wakefield?

  • Cheryl Verhey


  • Cheryl Verhey



    What’s on November 9th is that a Live Hanging ? Sign me up immediately

  • Cheryl Verhey


  • Cheryl Verhey


  • Cheryl Verhey


  • Cheryl Verhey


  • Cheryl Verhey


  • K. Brown

    It is psychiatry itself that suffers from an existential ‘disorder’ according to one of their own in this article in The Atlantic:
    There are enough valid “real” scientific studies now showing the
    multiple problems in multiple systems in our bodies that we no longer need to be defined by those who don’t keep up with the discoveries of their more educated and diligent medical contemporaries. The truths are being told by empirical science as it should be, albeit slowly and still without cure or much in the way of relief.
    His name will soon be forgotten as the archaic non thinker he is. He “moans and groans” about his patients too much.

  • M. Ratcha

    Poor guy. Imagine how insecure and desperate a person you’d have to be, on the inside, to keep flogging your cruel and inaccurate theory even after both science and anecdote had proved you mistaken. It’s hard to man up and apologize for mistakes, especially for older white dudes in a macho culture like medicine.

  • Adam Wheland

    Read this and consider the damage this man will do!


  • Noneuknow

    Lyme Disease put me in my permanent state of Chronic Fatigue along with other debilitating issues like Nerve Pain. There are probably hundreds of reasons a person could have Chronic Fatigue, but PSYCHOSOMATIC, my ass. I am so angry, because like Kasha says, this filters into our lives from our family and friends who read it isn’t real. Add this to the fact that Lyme Disease is an “invented illness” by even those who discovered it. SMH OFF!!

  • Tulipa

    A psychiatrist is not a scientist, what is he doing there at all?

  • Bethany Yagci

    Just when you think you can begin to trust the NIH even a little, and hope for having a coming out of the dark ages, you find that we keep returning back to square one. The National Institute of ‘We Don’t Care’ is more like it. Someone in medicine needs to stand up to these arrogant people for us! We can’t defend ourselves.