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.
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