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/.