ME activist calls on NIH to "get back to science" at Shorter Talk

M.E. denier, Edward Shorter, called CFS the modern version of hysteria in a presentation chronicling the history of 19th century hysteria before approximately 20 people at the National Institute of Health (NIH) on Nov. 9th. Shorter is a professor of the history of medicine at the University of Toronto.
In his presentation, Shorter showed a picture of the classic “fashionable sufferer,” a Victorian woman resting on a bed of pillows, as an example of what he claims is a continued trend of women describing psychosomatic symptoms throughout the decades.  
He concluded his presentation with the claim that hyper-sensitive patients reinforce each other in support groups, calling it a “toxic diagnosis.”  
Shorter dismissed recent research as “nothing new,” ignoring the Naviaux paper that shows the metabolites of people with ME have entered a protective hibernation state as a response to infection or other stressors.
ME patient and activist, Loetta Vann, attended the lecture, which she called “childish.” Vann was on her way to the NIH when a patient coordinator slipped her a note about the talk.  After Shorter had concluded his presentation, Vann stood before the room to share her perspective.
“The first time I came to this campus was in 1998 and they brought me here by ambulance …..  You are rooted in science, please go back to science and recognize a picture show of the 19th century as an old story,” Vann told the room.  
Vann also reported that Dr. Brian Walitt, a researcher in the Division of Intramural Research at NIH, spoke after Shorter’s presentation. Dr. Walitt said that many ME patients experience a specific and sudden point-of-onset to their disease. He also said that although many ME patients with post-viral illnesses do rebound there is a percentage that do not, similar to the percentage in cancer patients that continue to struggle from brain chemotherapy. Walitt remarked that cancer patients are individuals and not grouped together in a “social can,” referring to Shorter’s claim that ME patients are just reinforcing each other’s symptoms.     
The event was hosted by the National Institute of Nursing Research (NINR). The Solve ME/CFS Initiative wrote a letter to NINR Director Patricia Grady to highlight the concerns and to call for balance to Shorter’s presentation if the presentation could not be cancelled.
Following Shorter’s lecture, the Trans-NIH ME/CFS Working Group sent a letter to the ME community on Nov. 10 to clarify that NIH invites dozens of speakers each week to share ideas and that Shorter’s ideas “do not reflect the ideas, opinions, or policy of the NIH or the scientists now working on this disease.”
“The most important thing that we wish to share is that NIH remains firmly committed to using scientific methods to uncover the biological mechanisms that cause ME/CFS and to improve the lives of people who have been suffering for years, and even decades… It is fair to say it will have no impact on NIH’s interest in doing everything we can to advance the science of ME/CFS.”
The ME community had called on the Director of NINDS, Dr. Walter Koroshetz, to cancel Shorter’s presentation but Koroshetz replied with a letter saying that all “scientific thought” is welcomed even though Shorter is a medical historian and not a medical doctor or researcher. (NINDS is the National Institute of Neurological Disorders and Stroke housed in NIH.)
Shorter has a long history of treating people with ME with disdain and denial. He believes that many patients suffer from a “delusional somatization, the unshakeable belief that something is wrong with their bodies rather than their minds.” While extreme, Shorter’s views reflect the widespread disbelief and stigma that patients have faced in the medical community.


12 thoughts on “ME activist calls on NIH to "get back to science" at Shorter Talk”

  1. As the saying goes- they jest at scars who never felt a wound. The views of Shorter reflect the disempathic moral disengagement and the prejudice that elitist and snobbish folks with titles hold toward people they prefer not to know, understand, or converse with in a respectful manner.
    Shorter’s orientation reflects a deeper malaise in the medical community- discursive imperialism, lack of humilitas, and eliminative materialism. Is it no wonder that the biggest complaint people who seek medical care have is the lack of respect and the lack of listening from providers. And what good can be served by views that attempt to relegate people who suffer to moral and civil vagabondage? No good at all. Shorters position is one of moral cruelty and has n place in civil society.
    Shorter represents the worst not only in medicine but in civil society. I regret that i wasn’t their to expose his motivated cognitions for what they are.

  2. Mr Shorter’s breathtaking arrogance and ignorance of current scientific research shows how he is stuck in the past.
    Members may like consider going to his web site and placing polite comments on his views, I already have.

  3. It is too bad Dr. Shorter was given this forum to air his misinformed opinions,, but i am filled with gratitude to
    Loetta Vann and Dr. Wallitt for speaking out about their real need to utilize
    science to uncover the physiological basis of ME.
    Thank you, Adrienne, for this article

  4. Thank you very much to Loetta Vann for your representation of all of us at NIH.
    It is well known that some in the medical profession generally view women as psychosomatic complainers. Studies have been done that indicate this. From the summary of Dr. Shorter’s talk: “…continued trend of women describing psychosomatic symptoms throughout the decades.” If we take Dr. Shorter’s theory to its “illogical” conclusion, then all women imagine all their ailments all of the time. If this were true, then women would never need any biomedical treatment, because they would never have a physical illness. We would live forever!
    I would like to ask of those misogynistic medical practitioners who view women as just psychosomatic complainers, when does it occur to them that their patients might actually have a physical illness? I would assume the light goes on when diagnostic imaging and lab tests show a problem, but perhaps not even then? Of course, women can be so disdained during the medical consult that no tests are ordered, therefore delaying findings of perhaps a very dire health emergency. If a woman is already diagnosed with ME, and has an unrelated health concern, no matter how pressing, this too may be ignored, because it is wrongly assumed it is imaginary.
    ME Research UK has an article entitled “Misdiagnosis on a Grand Scale?”
    This article says they get about 400 calls per year, and some of them are from people who were diagnosed with ME, but instead had conditions such as Addison’s, MS, sleep apnoea, primary mitochondrial disease, primary liver disease and paranoid schizophrenia. After their diagnosis of ME, these people were left untreated until lucky enough to be seen by a specialist who diagnosed them correctly. Appalling that physicians are allowed to be so sloppy. Of course they could be using the Oxford case definition for CFS. However, It is astounding that they miss diseases such as the ones listed here. The ME Research UK article also notes two studies that found about 50% of those with a diagnosis of ME had another condition entirely. Alternate conditions noted included: endocrine problems, primary sleep disorders, cardiovascular disease, infections, and GI disorders.

  5. It’s pretty disappointing that the fact that it was Walitt who gave the introduction to Shorter’s lecture was left out of this article.

  6. This is shocking abuse again to pwme! How can this keep going on? Would they have someone speak bad / bully, about a disabled relative in their families?. I can’t believe, this will never end Nightmares!. Its not good for ME health ?

  7. I believe in free speech- so let Shorter rave on- for he helps to remind us of the all too common prejudices that exist thruout government and health care when it comes to “contested illnesses” like me and Lyme. Its, of course the height of immorality for Shorter and others like him to not take people at their word or to disregard the voice and lived experience of anyone.
    Evidentialism, verificationism, expert consensus etc should not “trump” persons voice and lived experience. No doubt since advisory cmmittees at NIH poorly represent the voice of people with me or LYME- there wiil continue to be folks like Shorter around. Its time to change advisory boards at NIH and the leadership at NIH- for too long they have given preferential treatment to experts and made people with illness a permanent underclass that has to fodm social movement organization to be respected.

  8. Thank you Adrianne for picking up the ball on this and getting the article written. You did a good job pulling together some rough notes. I would like to make one correction to the sentence, …. Vann was on her way to the NIH when a patient coordinator slipped her a note about the talk… It was acutally the NIH Patient Liaison rather than the [working group patient coordinator] who sent me a text, probably in response to the many requests for confirmation of the lecture and protocol on how to RSVP if one was needed. You are all an amazing group to be helping to pull patient efforts together in a coordinated manner.

  9. As women are the larger volume of all Autoimmune conditions sufferers, its really no surprise that Shorter would use this as a vehicle to attack sufferers of ME as malingerers. Afterall, haven’t MS, Behçet’s, and Lupus been dismissed as “psychosomatic”? Even non-seizure epilepsy has been dismissed this way. Its simply a way to dismiss the fact that they have no idea what is wrong with the person and refuse to admit they just dont know. Instead, its a way to blame the ill person for whats wrong with them. And its no doubt because of the prevalence of women in this illness that Mr. Shorter clings to in order to gain notoriety in refusing to legitimatize this illness. Again, he is no medical doctor, or even a mental health provider such as a Psychologist. He still longs for attention and validation in his dismissing people with illness. Hes a parasite of the worst kind, attaching himself to the wave of people who want to deny the validity of the condition. People like those involved in the PACE trials, who seek to deny financial support and reduce the burden of very ill people on the health services. Its disgraceful this charlatan was provided any time or attention at all by the NIH. It will only make him louder, more certain of his fallacies and leave him feeling validated in his misogyny.

  10. Jen Bacon, I like your reply. I am gathering data for a proposal to National Organization for Women (NOW) that they pick up Health as a feminist issue. If you have any data about Autoimmune condition sufferers, MS and other illnesses you write about, can you get that data to me? I have met with one NOW group in my area and they want me to present more accurate info. Footnotes. If you have this, do send it to me.
    bobbi dot thattakesovaries at gmail dot com.

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