Can a Leopard Change its Spots?
To those who have been following the Edward Shorter flap at the National Institutes of Health, which centers around an invitation to author and professor Edward Shorter to lecture scientists at NIH, it might be of interest that Shorter says he doesn’t “remember who made the invitation” to him to speak and that he “doesn’t know Brian Wallitt.” Arcane sounding information on its own, assuredly, but if you’ve been attentive to the saga, you probably already know this controversial lecture featured one of the most widely-published disease-deniers aside from Simon Wessely and was delivered to NIH scientists who claim to be in learning-mode on the history and science of M.E.—as well as poised to conduct a clinical trial of moderately afflicted M.E. patients. For many M.E. sufferers, the notion was next-to-intolerable and came like yet another tone-deaf and insulting blow to VSPs (very sick people) who have watched the NIH alternately ignore and belittle M.E. sufferers for decades.
Shorter is a professor in the psychiatry department at the University of Toronto. He wrote the 1992 book: From Paralysis to Fatigue: A History of Psychosomatic Illness in the Modern Era. He has been a three-decade proponent of the theory that M.E. is a “psychic epidemic.” The phrase suggests he’s got it half-right.
Brian Wallitt is the coordinator of the first clinical study of M.E. patients at NIH since 1987. Not surprisingly, Wallitt has been under scrutiny by the patient community. The last time NIH undertook an on-site M.E. study Ronald Reagan was president. The late investigator Stephen Straus sought to determine whether Acyclovir, a drug with activity against Epstein-Barr virus, was a helpful therapy. Straus concluded the drug lacked efficacy, contrary to success reported by practicing MDs. But Straus didn’t stop there. He went on to publish an influential paper suggesting patients had higher levels of psychiatric diagnoses than the general population. Straus’ psychiatric data were derived from a non-blinded verbal interview administered to patients in the acyclovir trial while they were hospitalized at what was then the Warren Magnuson Clinical Center, a.k.a., Building Ten. (In 2004, a new research hospital, the Mark O. Hatfield Clinical Research Center, was dedicated at NIH.) Diagnoses included fear of spiders and agoraphobia; when independent researchers assessed the data, they concluded psychiatric diagnoses were actually higher in the general population than in the little squadron of M.E. sufferers in Bldg. Ten.
Some patient advocates have worried Wallitt may view M.E. as a psychosomatic illness, but there has been little clarity on this matter from either Wallitt or his colleagues.
During a telephone interview last Friday, November 18, Shorter was pleasant if terse on the subject of his appearance at NIH.
“There were thirty to forty people there,” Shorter said. “I gave my take on CFS—I reprised my first ideas on CFS that I stated in From Paralysis to Fatigue. Certainly,” he continued, “there were no hostile questions, no challenges. There were a couple of patients there. They did not challenge me, which surprised me. Everything went smoothly.”
One patient who posted her account of attending the meeting to Facebook—a post that migrated to Twitter—the day of the meeting, November 9, made no mention of a second patient.
“I don’t remember who made the invitation,” Shorter continued. “I got a phone call from somebody—I couldn’t even remember the institute and then I found out it was the NINR (National Institute of Nursing Research).”
Wallitt is a medical officer at the NINR. Asked if he had been invited by Wallitt, Shorter said, “I don’t know him.”
Wallitt, by reports, introduced Shorter to the group. According to one scientist familiar with the protocol of this lecture series, whoever extends the invitation is considered the host and introduces the speaker at the lecture. Other Wallitt invitees who have presented their findings are Staci Stevens and Mark Van Ness of the Workwell Foundation. They were introduced by host Wallitt.
In response to email and phone queries, Wallitt wrote that his schedule “did not allow time” for interviews and recommended that his superior, the lead investigator for the clinical study, NINDS researcher Avindra Nath, was better suited to respond.
Shorter, asked about the Institute of Medicine report on M.E., which he excoriated in a Pyschology Today blog in 2015, continues to feel contempt for the I.O.M’s work in this area.
“I’m sure there was embarrassment at NIH over this report because it was unscientific,” Shorter said. “IOM normally is a respected organization, but this was totally one-sided. They considered the evidence that these patients put in front of them. I’m not surprised they were intimidated by the evidence that the patients put before them. These patients didn’t just testify,” Shorter continued, “there were advocates on the committee. This is not scientific.”
When it was pointed out that during the American AIDS epidemic, patient advocates were integrated into the scientific hierarchy in the federal health agencies, Shorter said, “I can’t really comment on them, but this is not a scientific way to proceed.”
Shorter equally disparaged the objectivity of Stanford geneticist and M.E. investigator Ron Davis, who was a member of the I.O.M. committee that provided the report Shorter said was unscientific. Davis’ task was to scour the M.E. literature for biomarkers, a task Davis has said resulted in his disappointment with earlier studies.
“(Ron Davis) has a son who reportedly has this and he totally moves within the movement and he’s in no sense an objective scientist," Shorter said.
For his part, Davis warned prior to Shorter’s lecture that Shorter’s appearance at NIH would be a “black mark” on the agency and pointedly asked when NIH would start advocating the use of leeches. Davis even suggested he would call for a Congressional investigation should Shorter’s lecture go forward.
Given Shorter’s tacit acknowledgment that his work on M.E. was a body of “ideas” as opposed to scientific fact, it was unfortunate Shorter ended the conversation due to time constraints. He precluded an obvious next question: does he believe that his ideas about M.E. no longer seem to be a majority view—25 years after he originally published them?
Call it much ado about nothing. Perhaps. The Shorter lecture has revealed once more that the science bureaucracy in Bethesda has yet to change its spots given its continued lack of transparency and its refusal to respect patient appeals on an issue like the Shorter lecture. Shorter’s views may seem prehistoric in 2016, but there is a symbolic aspect to the fact that NIH sought them out anyway, a symbolism that NIH officials fail to appreciate. There seem to be a few well-meaning people standing behind the curtain at NIH but they obviously need to choose their fights wisely if at all, suggesting the NIH as an institution is not entirely on board yet. These allies may be new to the struggle but they need to recognize that hundreds of thousands of patients ran out of patience—and some number of them simply ran out of time—years ago.
Addendum: Please check the math, but $17 million, the figure NIH claims will result in a 200 percent spending increase on M.E. in 2017, means the agency will spend $6.80 per patient next year, assuming you chose 2.5 million as your head count, the IOM's estimate. Again, check the math. Adjust that figure based on your best guess of how many people are sick with M.E. in the U.S., since no one really knows. By comparison, the NIH was spending $75,000 per AIDS patient in the early 1990s.
More on how NIH spends its money: NIH was awarded $1.1 billion by Congress six months ago to combat the Zika emergency—except that last week the World Health Organization has declared Zika—although serious—no longer a global health emergency, according to an article in the New York Times by Donald G. McNeil, Jr. on November 18. McNeil reported that the money was being used by Anthony Fauci’s institute, the National Institute of Allergy and Infectious Diseases (NIAID), to develop a vaccine; Fauci indicated in the article that “His agency would not slow down the effort to develop vaccines.”
On November 16th, the Centers for Disease Control, which has made Zika infection a notifiable event, posted on its website that thus far 149 people had become infected by Zika carrying mosquitos in the United States. For math freaks, that amounts to $7,382,550.36 for every known mosquito-infected Zika virus victim in the U.S.