Copyright 2016 Hillary Johnson All Rights Reserved
How does one explain the phenomena of self-styled experts in the field of myalgic encephalomyelitis who claim as their expertise mere opinions or theories as opposed to scientific evidence—theories that are compounded by what feels to patients like overt and inexplicable hostility, even willful cruelty, to those who suffer?
That list of nattering nabobs is not short. One could legitimately begin such a list by naming a handful of people at the Centers for Disease Control and the National Institutes of Health who held policy-making positions during the early 1980s, but in fact, the list reaches around the world, to the psychiatric cabal in the United Kingdom that includes Simon Wessely and Esther Crawley, who promotes exercise for M.E.-afflicted children, to New Jersey’s Princeton University, home to Elaine Showalter, a professor often bewilderingly described as “feminist,” who wrote a book that equated M.E. sufferers with people who believe they have been abducted by aliens. “Delusional” was the operative word in Showalter’s theory. The latter bragged in a 1996 appearance on CNN’s Crossfire that she had deliberately avoided reading any scientific literature about M.E. so as not to “bias” herself.
Canada has its own collection of elites who have exploited this disease for their own gain and, it sometimes seems, their personal amusement. Edward Shorter, among this Canadian group of science-avoiders since the late 1980s, published a book in 1992 called From Paralysis to Fatigue: A History of Psychosomatic Illness in the Modern Era. He is a professor in the psychiatry department of the University of Toronto and has written several books. His publisher of the 1992 book in question was Macmillan’s The Free Press, generally considered one of Macmillan’s more high-brow imprints. The book’s final chapter, which had the feel of prose added at the end of a project to jazz up a book that might otherwise have garnered limited interest, rips into the notion that what was then called “chronic fatigue syndrome” was a real disease. Shorter, with the enthusiasm of a jungle cat that had just been slung several pounds of raw meat, portrayed the malady as a manifestation of neurosis (mostly female) and an extension of faulty organic diagnoses provided for “psychosomatic” diseases going back centuries.
Here’s an excerpt from a Kirkus review of From Paralysis to Fatigue: “Using CFS as an example, the author traces how a psychosomatic illness becomes fashionable as the mass media, supplanting medical authority, disseminate pseudoscientific information about genuine, difficult-to-diagnose organic diseases to suggestible individuals with quite different symptoms. Whereas the ‘stifling intimacy of family life’ in Victorian times increased the propensity for certain psychosomatic illnesses, he explains, today social isolation and exposure to media sensationalism produce others.”
One might argue that Shorter, part of the mass media he spurns, is himself supplanting medical authority by his own dissemination of pseudoscientific information. Certainly, his views were unlikely to have come as a surprise to anyone who knew much about him. Before his 1992 book, he wrote a book about the National Institutes of Health (NIH), called The Health Century in 1987. That book was part of a deal with PBS, a tie-in to a documentary series dedicated to the notion that the most meaningful advances in medical science in previous decades had occurred at the U.S. health agency in Bethesda. In synch with the celebratory tone of the documentary, Shorter’s reverence for and adulation of NIH scientists rendered the book’s pages as sticky as the glue children use to build balsawood airplane models.
For many M.E. sufferers, adulation of NIH as an institution has been elusive if nigh on impossible. Throughout the 1980s, just one NIH scientist worked on M.E., Stephen Straus. The latter’s opinion that M.E. sufferers were, as he suggested publicly, “…people who need our help to get behind the wheels of their BMWs,” was a bitter pill patients were forced swallow, repeatedly. In spite of a flood of letters to the agency requesting that Straus be fired, the latter was vigorously protected throughout his career at NIH by Anthony Fauci, the director of the National Institutes of Allergy and Infectious Disease and unofficial “AIDS Czar.” Fauci is revered by AIDS patients. M.E. patients? Among those who lived through the era, not so much.
Ed Shorter has been mostly quiescent on the topic of M.E. in recent years though he has on occasion posted virulently anti-M.E. blogs on Psychology Today’s online platform. On February 19, 2015, in a piece with a frustrated-sounding title “Chronic Fatigue Syndrome is Back!” Shorter ravaged the Institute of Medicine’s report on M.E. He claimed M.E. was a “psychic epidemic” and concluded the IOM had been a victim of what he called “agency capture.”
“Regulatory bodies occasionally become captured by the industries they are supposed to regulate,” he wrote. The “industry,” in Shorter’s mind, was apparently a psychosomatic malady of perhaps two million people and a tiny percentage of its most vocal sufferers who had mislead the committee. Shorter complained: “This particular committee included several CFS advocates at the table, and held two public hearings at which advocates and patients had ample opportunity of expressing their views. Critics were not invited.” (Presumably, nabobs like Shorter.) Shorter’s piece was so harsh Psychology Today asked him to rewrite it as the sludge of tart comments poured in and then did him the courtesy of publishing a second, less contemptuous version four days later. (Read Shorter’s blogs for Pscyhology Today about the IOM report at the end of this article.)
Nearly two years have passed since Shorter opined on the failings of the IOM report. Then, approximately three weeks ago, according to a source at the National Institutes of Neurological Disorders and Stroke (NINDS), an announcement of Shorter’s appearance at NIH appeared online on the Intramural Research Program’s News and Events calendar. In case you haven’t kept up with the complexities of the NIH organizational charts, the NIH Intramural Research Program is defined on is website as “the internal research program of the NIH,” including all 27 institutes that comprise the NIH. According to the NINDS source, who agreed to speak without attribution, the NIH hosts “dozens of lectures every day” and “NIH scientists are exposed to a constant flow of people. Dr. Shorter’s [lecture] is in the same vein.”
As most may already know, the neurological institute is planning an in-house study of 40 M.E. patients who have been ill for less than five years and 40 healthy controls. That study has been under fire by some critics since NINDS publicized the involvement of Brian Wallitt, MD. as the lead clinical investigator. Wallitt has published on fibromyalgia in the past and made comments that some have interpreted to suggest he believes fibromyalgia is psychosomatic.
The invitation went unnoticed until on November 3 an academic M.E. researcher noticed the announcement of Shorter’s appearance. The researcher decided to Tweet the notice. Hours later, however, the Shorter announcement disappeared from the NIH’s Intramural Research Program’s calendar. https://irp.nih.gov/news-and-events/events Needless to say, M.E. patients familiar with Shorter’s decades-long disparagement of the legitimacy of the disease were stunned that any individual or entity at NIH had invited Shorter to come to Bethesda to educate government scientists in the “history” of M.E. As Carol Head, the Solve ME/CFS Initiative’s president said: "The NIH's values are data-based and scientific. Would the NIH invite someone who believed the earth was flat to speak at NIH?"
According to the NINDS source, the invitation was not extended to Shorter by any member of either the intramural or extramural staffs of that agency. To clarify, the NINDS extramural staff is devoted to developing requests for grant applications (RFAs) and appointing grant review panels; it includes Vicki Whittemore, popular for reputedly championing the M.E. cause within NINDS. The intramural staff at NINDS is responsible for performing research on the Bethesda campus and includes Avindra Nath, who is director of the M.E. clinical trials at the NIH Clinical Center.
When Walter Koroshetz, the director of the neurology institute, learned of the Shorter invitation, he decided that his institute would not be a sponsor of the lecture, according to the NINDS source, and the institute sought to communicate to outsiders that, as the source said, “It wasn’t us.”
If no one in the intra or extramural sections of NINDS invited Ed Shorter to the NIH lecture series, who did?
According to Solve ME/CFS's Carol Head, the invitation was issued by the National Institute for Nursing Research. However, another highly-placed source at NINDS told me that the Institute for Nursing Research is now “disavowing any involvement in that decision” to invite Ed Shorter to the NIH. (My email inquiry to the NINR on the subject has so far gone unanswered.) At any rate, it appears that two distinct institutes in Bethesda—or their leadership—are running as fast as they can from any association with the Shorter invitation.
In the Twitter storm that followed the November 3 news that Shorter had been invited to share his theories with NIH scientists, the patient advocacy group MEAdvocacy brought the blame to the door of none other than Brian Wallitt. But on what evidence? I soon discovered where the suspicion lay. I had assumed that Wallitt was a doctor who worked on the staff of the NIH’s clinical center. However, in my online search for Brian Wallitt, it became quickly apparent that Wallit’s true home was none other than the Institute of Nursing Research. He is named there as a staff clinician: https://www.ninr.nih.gov/researchandfunding/dir/irorgchart
"(Wallit's) appointment is in (Nursing Research)," NINDS grant officer Vicky Whittemore confirmed. "He's on loan from that institute to help Dr. (Avindra) Nath at the Clinical Center."
When I asked Whittemore if Brian Wallitt issued the invitation to Shorter, she responded: "Your notion is probably correct but I have no way of proving that one way or another."
I proposed the same scenario to my source at NINDS, who responded firmly, “I can neither confirm nor deny that.”
Head said she had no knowledge of whether Wallitt had extended the invitation to Shorter or not.
My direct call to Brian Wallitt resulted in a message that his mailbox “was not in service.” I sent an email to Dr. Wallitt at asking him if it was his idea to invite Ed Shorter to deliver a lecture to NIH staff, but the email bounced back. I will report back when and if I hear from him.
In the meantime, the lean, white-haired Shorter delivered his lecture to about 20 people Wednesday morning in a classroom on the Bethesda campus, according to Head. Word was NIH was not going to allow anyone other than NIH staff to attend, but in fact, Head reported, at least one M.E. patient was in attendance. That patient reported on Facebook yesterday that she had stood to ask those in attendance to focus on science rather than “a childish slideshow of 19th Century hysteria with a view that CFS is the modern version.”
Thus, indications are that the Shorter lecture, and the invitation, have been an embarrassment to the NINDS, which has been seeking to persuade M.E. sufferers it is serious about pursuing M.E. in a scientific fashion.
“The people we work with at NINDS were blind-sided by this as well,” Head noted. “Certainly the folks we work with have been dismayed that this has occurred. They want to move on from it and focus on the good work that is indeed being done at NIH and they find it a deeply unfortunate distraction. I’ve emphasized to Vickie Whittemore and others at NIH why this is just so stinging to patients. For us, it’s like going back thirty years. Despite the fact that this was put on by a different institute (the NIH Intramural Research Program) many patients don’t understand the organization chart of NIH.”
Head continued, "It's done deep damage within the ME/CFS community--I felt there were at least some inklings of trust with NIH, as is appropriate, but this situation moves that level of trust backwards, which is tragic."
Head and her organization responded rapidly to news of Shorter’s visit.
“We sent an open letter to the woman who heads the Institute of Nursing Research (Patricia A. Grady) and copied at all the usual people—(NIH director) Collins, (NINDS director) Koroshetz—then we sent out to our full mailing list a call to action for folks to contact their congress person, asking them to express their dismay to NIH.”
Although she was obviously frustrated by the consumption of energy required to respond to the Shorter fracas, she added that it had served to once more put NIH on notice that the M.E. community is attempting to monitor events at NIH.
“This has been a time-consuming situation for us and for them (NINDS). They would prefer to avoid these sorts of situations in the future. We’ve proposed that we and others are here to provide insights before they take actions—sometimes they can do that and sometimes not. I’m hopeful that everyone’s painful experience in the last week will result in additional communication. This just emphatically strengthens what was already there—the realization that they are under scrutiny and that they only invite speakers who move the thinking and the science forward.”
A reasonable concern is that the alarm among patients over the Shorter lecture may result in even less transparency at NIH rather than more, however.
Inviting a flat-earther like Shorter, whose moment in the sun has been over for more than two decades, was an egregious plan from the start. People who have been disabled for years and even decades by M.E. can be forgiven their outrage over an utterly inappropriate, insulting and even hurtful event. That it should have occurred at ground zero, the location of the government’s first initiative to focus on the disease after thirty years of effectively disappearing the disease, makes it all the more unspeakable.
Three decades ago when Shorter and his ilk began milking the M.E. epidemic for their sensational claims, M.E. sufferers had few advocates. That's changed.
Stanford scientist Ron Davis, whose son suffers from severe M.E., read some choice excerpts from Shorter’s book and columns about M.E. and fired off an email to NIH director Francis Collins in protest, calling the choice to invite Shorter to the NIH to speak “a very big black mark on NIH.” Davis told Collins that Shorter’s belief that “there is nothing wrong with ME/CFS patients” was “barbaric.”
“When will NIH start advocating the use of leaches again?” Davis asked.
Davis also earlier suggested to Collins that if the lecture went forward, he would seek a congressional investigation into the matter.
Davis’ umbrage aside, the fact that the top bureaucrats at NINDS appeared to recognize they had blundered, even if they cannot fully comprehend to what degree, seems to this observer like moderate progress, at least compared to the NIH's negligence of past years. That not only NINDS but a second institute at NIH are fleeing from responsibility for the invitation is also somewhat heartening. If the blame for Shorter’s appearance in NIH lies with Brian Wallitt, M.E. patients may need to revisit their initial reservations about his involvement with the clinical study and make their concerns known yet again. If the blame is not Wallitt’s to shoulder--and he remains innocent until proven guilty--it’s back to my favorite board game. Was it Colonel Mustard or Professor Plum?
Post Script: Today, November 11th, the Trans-NIH ME/CFS working group issued what is probably the closest attempt at apology--short of actually apologizing--to the M.E. community by posting the following:
"Dear Members of the ME/CFS community,
You have written to express concerns about the NIH lecture by Edward Shorter that took place on November 9th. Thank you for sending us your thoughts.
Please know that the lecture you asked about was not sponsored by either the ME/CFS Special Interest Group or the Trans-NIH ME/CFS Working Group, which means that it does not reflect the ideas, opinions or policy of the NIH or the scientists now working on this disease. Given the professional and learning environment that NIH promotes, dozens of people come each week to the NIH to exchange ideas with NIH scientists; the scientists who attended these lectures frequently challenge or disagree with the speakers' ideas. In scientific circles, disagreement with what is said is often more scientifically more productive than agreement. The exchange of information and divergent opinions, followed by critical analysis, is essential to moving any field forward. 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 only to improve the lives of people who have been suffering for years, and even decades. Comments made in a seminar will not undermine the progress at NIH.
Several of you have asked why the lecture was not mentioned during the telebriefing that NIH hosted on November 2d. The telebriefing was intended to discuss the efforts of the Trans-NIH ME/CFS Working Group and the progress made in initiating the NIH intramural research clinical study. The lecture was not part of those efforts.
The speaker shared his viewpoint, the scientists who attended asked questions, and perspective was provided by a patient and a community physician. The lecture was attended by approximately 15 scientists, including some who are part of the clinical study investigative team. 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 Trans-NIH ME/CFS Working Group"
Given that so many people inside the NIH appeared to know the lecture was a bad idea before it happened, it's surprising no one at the agency, not even the director, interceded to cancel Shorter's invitation, in spite of pleas from so many quarters to do so. Rather than cancel Shorter, the agency chose to welcome him and follow up with a non-apology apology after the fact. Among the 15 scientists present were "some who are part of the clinical study investigative team." Bad news they were there, bad news they apparently thought they might learn something by attending.
When will real communication with M.E. sufferers override saving face at the U.S. health agencies? When will M.E. patients receive the respect that victims of other equally serious or even less serious diseases receive from U.S. government scientists? When will NIH scientists start acting less like politicians and more like impartial scientists?
Edward Shorter's website:
The revised version of Shorter’s 2015 Pyschology Today piece about the Institute of Medicine’s report on M.E.:
Shorter’s original 2015 Psychology Today essay on the IOM report, beginning, “Just when you thought a stake had been driven through the heart of Chronic Fatigue Syndrome, it comes roaring back….”
Copyright 2016 Hillary Johnson All Rights Reserved