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.