The following text is an open letter that I sent to Dr. Walter Koroshetz, Director of the National Institute of Neurological Diseases and Stroke.
A plea for sanity, respect and science
I write to you tonight to personally ask for your intervention for the sake of people with ME/CFS.
Today, we learned that Dr. Edward Shorter has been invited by the ME/CFS Special Interest Group to present an historical perspective on CFS on Wednesday, November 9th at NIH. I ask you to reverse this decision.
Dr. Shorter authored a commentary on the IOM’s report and diagnostic criteria for ME/CFS in February 2015. In his original article, he said the following:
- The IOM committee was “a committee that the CFS patients’ lobby has roped, captured, and hogtied.” The IOM report was an “embarrassment . . . valueless, junk science at its worst.”
- “Nothing has changed since  in scientific terms. There have been no convincing new studies, no breakthrough findings of organicity, nothing. And there never will be.”
- “[B]ringing militant advocates into such a discussion is equivalent to a committee of geographers that includes members of the Flat Earth Society.”
- “[I]n the several public hearings the CFSers appeared in mass to pour out their tales of woe.”
- “The public hearings were a circus, with moaning and groaning victims right and left.”
- “[W]hat many of these patients have is a kind of delusional somatization, the unshakeable belief that something is wrong with their bodies rather than their minds.”
Psychology Today rightly pulled this highly offensive and wildly inaccurate article. Five days later, Dr. Shorter published a heavily edited version of his opinion, putting forth the same argument with less explicit insults. CFS is “a psychic epidemic,” and patients have “delusional somatization” or depression. “[T]hese illness beliefs may lead to disability, as people obsess about their symptoms, entrench themselves in the conviction of organicity, and become disabled.”
Dr. Shorter’s opinions have no place in discussions about and research into ME/CFS, a disease which the IOM and the NIH’s P2P Panel reports declared unequivocally to be a physiological disease, not a psychological disorder. There is nothing to debate here; there are not two sides to this argument. NIAID would hardly invite Dr. Peter Duesberg to speak on the question of whether HIV causes AIDS. Nor would NICHD invite Dr. Andrew Wakefield to argue that vaccines cause autism. Discredited hypotheses should not be cast as valid views in the face of data that disprove them.
Just yesterday, you addressed people with ME/CFS during an NIH telebriefing. You emphasized the importance of partnerships between researchers and the community. You assured us that NIH sees our involvement as critical for success. Surely you must understand that an invitation extended to Dr. Shorter is a slap in the face to people with ME/CFS. You cannot expect trust, cooperation and partnership from the very people that your invited speaker calls “militant,” “delusional,” and “moaning and groaning victims.”
Dr. Koroshetz, please, if you sincerely want to move ME/CFS science forward, Dr. Shorter cannot be a part of that effort. If you are sincere in your request that people with ME/CFS work with you, then do not insult us by listening to a view of our disease that has been thoroughly discredited by NIH-funded science.
I ask you, Dr. Koroshetz, to lead ME/CFS research forward, not backward. I ask you to lead by example, and accord people with ME/CFS the same respect that you show to people with epilepsy or Parkinson’s disease. Follow the conclusions of the IOM and P2P reports. Follow the data. It is time to set aside the psychogenic hypothesis of “chronic fatigue” and step firmly forward, towards the answers that await us in biomarker and pathophysiological research.
I am ready to partner with you and any scientist who will follow the data forward. Will you partner with me?