Can A Leopard Change its Spots? ME and the NIH
In 2016, just as the NIH was gearing up for its first ME study in decades, Hillary Johnson talked to pop historian and ME-denier, Canadian Edward Shorter.
The outcome of the National Institutes of Health’s eight-years-in-the-making study of 17 mildly-afflicted ME patients was predictable. I have dreaded the project’s results since NIH publicized its undertaking in November of 2015 with the hype and swagger that characterizes that agency. That announcement followed a February 2015 report by the Institute of Medicine, commissioned by the NIH, which offered yet another definition of ME and claimed to have “redefined an illness.”
I knew well the history of contaminated thinking about ME that seems unshakable, as if in the institutional DNA, inside this agency. That history unfolded in real time for me as I reported my book Osler’s Web over a period of nine years (1986-1995).
The head of the snake was de facto NIH chief and AIDS Czar Anthony Fauci, who gave succor and provided mafia Don-like protection to his ME lieutenant Stephen Straus beginning in the early ‘80s until Straus’ death from brain cancer in 2007. In 2020, Fauci told the Wall Street Journal that his keen interest had always been diseases with the power to kill—that’s the challenge that turned him on—not, to use Fauci’s own adjective, “annoying” diseases with no apparent endpoint.
I’ve long wondered: why is a disease that steals its victims’ futures with the sudden blow of a random murder any less dramatic than a protracted death? As the late ME advocate Tom Hennessey once said about fatal diseases, “At least you can make peace with your God.” Hennessey’s “annoying” disease drove the 59-year-old to suicide in 2013.
The study released to the public on February 21, 2024 was the first attempt by NIH to investigate ME since 1989. The flaws and absurdities and grandiosities of this study will be explored in another column. For now it’s probably enough to say that the effort by brain infection specialist Avindra Nath and 74 other scientists, costing $8 million, was rife with the illogical and prejudicial misreading of ME that has thrived within the US federal health research establishment for over three decades. The agency’s money-wasting, blinkered goal turned out to be finding an explanation for “fatigue.” But as any patient could have told the folks who lurched ahead blindly on their fishing expedition, the question has never been what causes “fatigue”—it’s what causes the DISEASE, dummies. “Fatigue,” a most unsatisfactory descriptor to begin with, is but one symptom.
I’m reminded of the late clinical genius Paul Cheney’s comment to me many years ago about researchers who practice science at the engineering level. He was referring specifically to the NIH’s Straus, a virologist in the National Institute of Allergy and Infectious Diseases. Straus took on ME with a cudgel, hacking and smashing his way through the thicket, ignoring subtleties, missing clues, despising and fearing his challengers in medicine, defaming women sufferers, never asking the obvious questions. His was a testosterone-soaked ramble lasting years and costing lives. It’s clear now that Straus has a group of spiritual descendants at NIH who continue to be influenced by his rage at the disease and distrust of patients.
The last time NIH tried to conduct an ME study was thirty-five years ago, more than a generation. Then, Straus performed a psychological assessment of twenty-one ME patients. These patients had enrolled in an Acylovir trial under Straus’ supervision. In a remarkably devious fashion Straus turned a drug trial into something entirely different. Ultimately, he claimed ME patients were plagued with histories of mental illness before acquiring ME.
Straus’ report appeared in an obscure psychiatric journal in 1989, but the NIH public relations office sent a press release touting the study’s conclusion to 500 press outlets. NIH, in other words, armed with what it considered adequate proof, raised its bullhorn to claim ME was psychiatric. When I asked the public relations person with responsibility for ME why the agency felt compelled to send a press release about a study of twenty-one people to 500 press organizations, she told me: “Well—We know there’s a lot of interest in (ME). It’s the number one inquiry from the public that we get at NIH.”
Needless to say, the press had a field day. Straus’ conclusion, a fun fantasy ripe for comedy, rippled through the culture.
Johnny Carson, host of the Tonight Show, joked, “It turns out chronic fatigue syndrome is pretty serious. Apparently Yuppies are so tired now they don’t have the energy to tie their sweaters around their necks!”
His expression deadpan, Carson pantomimed a half-hearted, failed effort to knot the arms of a sweater below his neck. The studio audience roared.
Time magazine published a cartoon of a man in black tie falling asleep at a dinner party—face down on his plate. The disease was hilarious but, paradoxically, according to Time, it was “fashionable,” too.
Before the NIH papered Straus’ conclusions wall-to-wall, the legitimacy of ME remained an open question. Straus ended the dialogue, shoving the intellectuals in the field toward the edges of the discussion, an injustice that made the smart doctors look like quacks and the quacks appear “in the know.”
Anguished patients wrote to members of Congress, begging for Straus’s firing or reassignment. (The Internet did not exist.) AIDS Czar Fauci took time to respond to at least one grieving patient’s letter with a brief cover letter and a copy of a paper by Connecticut psychiatrist, Peter Manu. Maybe Fauci took the time because the patient was a medical doctor. The doctor copied me on Fauci’s tone-deaf letter. Manu, a skeptic in Connecticut, was garnering press attention with his unfounded claim that ME was psychosomatic. Fauci’s message seemed to be, “See, it’s not just our expert Straus who thinks (ME) is bullshit.”
Fast forward to autumn 2015, when NIH announced its scientists were embarking on the biggest, best clinical study of ME patients undertaken in the history of humankind—in other words, the first NIH effort since Straus’ 1989 article in the psychiatric journal. For a moment, NIH basked in the goodwill of people who assumed the agency was making a sharp turn in the direction of reason. For those watching events unfold, however, the picture was less rosy than the NIH public relations machine let on.
For one, a few NIH researchers were making a show of attending a series of private, on campus lectures from putative ME experts. Understand: no one at NIH really knew much about ME beyond the agency’s own propaganda. Clinical expertise had been perpetually unwelcome at NIH. After all, if you took the disease seriously and actually saw patients, you were biased. Additionally, uncamouflaged hostility toward ME patients still raged inside NIH even in 2015. Two years earlier at a scientific conference with a large contingent of ME patients in the audience, I asked newly retired retrovirologist Frank Ruscetti, a Gallo lab veteran, how NIH scientists actually felt about people with ME.
“They hate you,” Ruscetti responded.
NIH’s Brian Walitt, who was coordinating patient selection, was in charge of inviting speakers to help familiarize NIH researchers with ME. Walitt hailed from the NIH’s National Institute of Nursing Research at the time. Soon thereafter, in 2016, he became director of the “interoceptive disorders unit” of the National Institute for Neurological Disorders and Stroke (NINDS). An online Cambridge Dictionary describes interoception as “the feeling of knowing what is happening in your body, for example if you are hungry, thirsty, warm, cold, etc.”
A problem with Walitt’s learning sessions was that at least one of the lecturers wasn’t a doctor or scientist, he was little more than an angry, if influential, theorist some readers may remember from the previous century: Edward Shorter. The latter was a Canadian pop historian who had been an NIH shill ever since he was hired to write a sycophantic book to accompany a PBS series about the history of the NIH in the early 1980s. Shorter was among Canada’s most vocal proponents of the notion that ME is fakery. In 1993, he published a 400-page book defending his theory. Pardon me if I don’t provide a link to that book.
Edward Shorter
Brian Walitt
Given that the NIH study of 17 patients—make that 13 patients since four miraculously recovered—is in print, I decided to re-publish an interview I did with Shorter in 2016. I called Shorter after I heard he had given one of the first lectures to NIH employees. Despite the passage of thirty years, Shorter had not changed his mind about ME.
This piece first appeared in November of 2016 on a subscription website that I published from 2016 to 2020.
Herewith:
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 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 Walitt.” 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 ME-deniers aside from Simon Wessely of the UK. Shorter delivered it 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 vocal three-decade proponent of the theory that M.E. is a “psychic epidemic.” The phrase suggests he’s got it half-right.
Brian Walitt is the coordinator of the first clinical study of M.E. patients at NIH since 1987. Not surprisingly, Walitt 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 an unblinded verbal interview with patients in the acyclovir trial while they were hospitalized at what was then the Warren Magnuson Clinical Center, a.k.a., Building Ten. Put another way, these patients were Straus’s bedridden captives who innocently responded to queries from a shrink. The shrink failed to tell them he was collecting data for a paper about their mental health at Straus’ behest. Diagnoses of fear of spiders and acrophobia predominated; when independent researchers assessed the data, they concluded these psychiatric diagnoses were actually higher in the general population than in the tiny squadron of M.E. sufferers who had been held hostage by Straus. They also challenged the categorization of such widespread phobias as mental illness.
When the study was published, one of those patients, a psychotherapist named Susan Simon, decided to sue Straus for malpractice. When I interviewed her, she seemed fairly well along with her lawsuit. The next thing I heard about Simon shocked me. A truck had struck and killed her while she was crossing an intersection in Manhattan. She was on her mobility scooter.
Some patient advocates have worried Walitt may view M.E. as a psychosomatic illness, but there has been little clarity on this matter from either Walitt or his colleagues. In print, however, Walitt has described psychobabbler (as they used to be known) Shorter as “distinguished.”
“(Ron Davis) has a son who reportedly has this and he totally moves within the movement and he is in no sense an objective scientist," Shorter said.
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).”
Walitt is a medical officer at the NINR. Asked if he had been invited by Walitt, Shorter said, “I don’t know him.”
Walitt, 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 Walitt invitees who have presented their findings are Staci Stevens and Mark Van Ness of the Workwell Foundation. They also were introduced by host Walitt.
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.
In response to email and phone queries, Walitt wrote that his schedule “did not allow time” for interviews and recommended that his superior, the lead investigator for the clinical study, a specialist in brain infections, 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. The IOM issued a report on ME in 2015 that offered yet another definition of ME. Its participants were asked to do a literature review of ME as preparation.
“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 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.
Copyright by Hillary Johnson, 2024. All Rights Reserved.
It's evident to me that these individuals at the NIH don't want to find the real cause of ME/CFS, or maybe they're being told not to. My husband and I both have ME/CFS with immune deficiency and I can pinpoint exactly how and from whom I caught it and the exact date. Even though both of us have identical symptoms, all institutions refused to see us, i.e. Mayo and Cleveland clinics, the Undiagnosed Disease Network, etc. I finally started to understand what we had after I read your book as well as Neenyah Ostrom's book on ME/CFS. How can the medical community ignore this serious biomarker of immune deficiency??? It is non-hiv AIDs and it is easily transmissible, i.e. saliva can transmit it!! My heart sinks further and further as each year goes by and I see that most of the individuals studying this are all going down the wrong path. They're not looking for the pathogen. So frustrating and disappointing.