Dr. Fauci's Nightmare

The National Institutes of Health's retired AIDS Czar got sick--and wrote an editorial about it for the New York Times. Sub-head: "What it's like to get the neglected disease"

Copyright 2024 Hillary Johnson. All Rights Reserved.

“It was terrifying. I could not swing my legs over the side of the bed to sit up without help from my wife and three daughters. I could not stand up without assistance and certainly could not walk. A very scary part of the ordeal was the effect on my cognition. I was disoriented, unable to remember certain words, asking questions of my family that I should have known the answers to. I was afraid that I would never recover and return to normal.”

Tony Fauci, writing in the New York Times on October 13, 2024

I.

Hmmm…Did I ever tell you about that time in 1989 when a former dentist, bedridden for years by ME, wrote Tony Fauci a letter begging him to ask NIH to stop labeling ME patients mentally ill? Fauci’s NIH colleague Stephen Straus, who could be described as Fauci’s errand boy, had just published a paper purporting to show that nearly everyone with ME had histories of mental illness. Straus’ study might have gone unnoticed but for the NIH’s decision to send a press release about it to five-hundred media outlets.

“For chronic fatigue syndrome (sic), there aren’t that many papers that come out of the National Institutes of Health. But it’s the second most popular inquiry from the public. It’s just behind AIDS. We know there’s a lot of interest in it,” a public affairs officer told me when I asked why NIH blanketed the US media with a study of 28 people appearing in an obscure psychiatric journal.

Fauci responded to the dentist by sending him a Xeroxed article by Peter Manu. The latter, a publicity-seeking Connecticut psychiatrist, had published a paper that echoed Straus’ fiendish effort.

Fauci included a curt note to drive home his point. Here’s a paraphrase: Our expert Straus is right about ME. His findings have been replicated—by a psychiatrist in Connecticut.

The dentist called me seeking my address so he could send me a copy. He rued the injustice of having a hostile, petty man like Fauci in charge of a major disease—with no clear avenues of appeal for those who were suffering from it. I recognized his poisonous mix of rage and grief. How very hopeless it was in those years for anyone with ME, given that Fauci was in charge of the disease at the NIH. Patients had no idea what they were up against.

A special relationship exists between congress and the National Institutes of Health that has seriously impeded progress in ME. Members of congress have no desire to tarnish the reputation of what they consider a national treasure and repository of the best of American science. Politicians tend to handle NIH administrators with kid gloves, in nearly all cases deferring to their judgements and assessments. “We are the politicians, they are the scientists,” is their unwritten motto. There are occasional departures. A very recent one has been Sen. Bernie Sander’s proposal that ten billion dollars be spent on Long Covid research, but then NIH scientists are fine with researching Long Covid so there is little need for strong arming.

But back to 1989, the year NIH declared war on ME sufferers. That same year, Fauci sat before Henry Waxman’s House Appropriations Subcommittee. One of its members asked him if he needed more money to conduct research on ME.

“No,” Fauci told the subcommittee members. “In the absence of a breakthrough (on ME), we do not know how to proceed.”

Que rim shot…

It's hard to know where Fauci thought that breakthrough might occur, since NIH's de facto policy was to refuse extramural researchers’ grant applications, a policy that lasted for decades and even now has eased only slightly. But that was the point. Fauci wasn’t looking for breakthroughs.

II.

One of Fauci’s most impressive acts of thuggery was his trip to Capitol Hill that year with his buddy Stephen Straus in tow. The two had some down and dirty business to conduct with Congressman John Porter.

Did the two travel from Bethesda to the Hill by limo? In my mind, that’s how I imagine it. Fat cat Fauci was for much of his career the most highly-paid federal employee, earning more than the president, more than the director of NIH, given his lengthy tenure that began in 1984 with Ronald Reagan’s presidency. I doubt the couple hoofed it out to Wisconsin Avenue to hail a cab. They obviously considered their mission to be not just worthy but exalted. Their purpose: to put their boots on the necks of thousands of very sick Americans and keep Straus’ fragile ego from fragmenting.

At the time, some unknown but exceedingly large number of patients was urging congress to address the Straus problem after his paper equating ME and mental illness. They were calling their representatives and showering the Hill with letters, mailed and Faxed. They were pleading, demanding and asking politely. They wanted NIH to fire Straus for his shoddy research or, if not fired, then reassigned to another disease. Compared to today, one might say the 1980s and early 1990s were the heyday of patient advocacy. This unorchestrated protest is the first and last example I can think of in which patient activism appeared to have threatened the inner-workings of the NIH or any other federal agency.

Fauci saw Porter as a key political figure for two reasons; Porter sat on the House Subcommittee for Appropriations and the congressman had a reputation as a proponent of the disease. Patients considered Porter, a Republican representing a tony suburb of Chicago, to be a friend of ME because he had in the past supported research. The congressman had a small roomful of four drawer file cabinets in his office suite stuffed to near-overflow with letters from ME sufferers to prove it. But Porter turned out to be a false friend.

Fauci complained to Porter that patients were applying undue pressure on Congress that, in turn, was being felt at NIH. Congress, Fauci insisted, had no business telling scientists how to perform their jobs. Nor would NIH tolerate patients attempting to define what diseases it should be researching or how NIH money should be allocated. Straus, Fauci added, wanted to be left alone to pursue his research as he saw fit, free from congressional scrutiny and demands.

Star-struck and overwhelmed by the appearance of the nation’s famous AIDS Czar and his side-kick Straus in his Capitol office, Porter agreed to Fauci’s demands. He would call off the dogs—those desperate people asking for unbiased, scientific research into their ailment.

Porter’s administrative aid, who actually had read some of the ME patients’ mostly-hand written letters that poured into Porter’s office, took a more provocative pose with the two. He raised the possibility that Straus was indeed mistaking an organic disease for a psychiatric one. Neither Straus nor Fauci was willing to consider the possibility. Instead, Fauci expressed puzzlement over CFS victims’ vehement reaction to being told their difficulties were psychiatric, according to the aide.

“Look if I tell someone they have an ulcer, they don’t get upset, but ulcers are related to the brain,” Fauci responded.

Actually, doctors incorrectly told patients for decades that stomach ulcers were caused by stress. In 1984, an Australian researcher proved a common bacterium, H. pylori, caused most ulcers. That widely heralded discovery, which eventually resulted in a Nobel Prize for the Australian doctor, was made five years before Fauci’s visit to Porter’s office.

III.

While reporting Osler’s Web, I asked Fauci for an interview every year from 1986 to 1994. Each time NIH staff told me that Fauci didn’t feel he knew enough about this disease to talk about it. By then, prevalence estimates suggested as many as two million Americans were sick. Finally, I told his staff that Fauci was going to look silly if, by 1995, he was still claiming to know so little about this common disease that he lacked the confidence to engage with a reporter. That’s when Fauci’s staff offered his deputy, James Hill, to me. The staff insisted Hill could reliably speak for Fauci.

Hill turned out to be a gray-haired, patrician man in Brooks Brothers-like garb who was unguarded and mostly friendly in his remarks. Certainly, his conversational style couldn’t have been less like Fauci’s enforcer personna. When I asked Hill what Fauci thought of ME, he replied with some enthusiasm: “Fauci wonders why patients are so upset about being labeled with a psychiatric problem.  He said to me, ‘Haven’t we come far enough along in our society that mental illness needn’t carry a stigma?’”

I noticed that the public relations woman sitting next to Hill shifted uncomfortably in her chair. Hill noticed, too. Had he erred?

A few minutes later, in response to a question, he told me ME patients should feel “lucky” Stephen Straus was working on their disease.

“He’s the only guy at NIH who is even interested in [ME],” Hill said, jutting his chin at me as if daring me to not feel lucky.

He added, “If it weren’t for Straus, no one would be working on ME.”

I refrained from uttering a response that came immediately to mind: Nothing is greatly preferable to what you’re offering.

IV.

In 1999, patients had reason to celebrate. Straus dropped ME to establish a Center for Complementary and Alternative Medicine at NIH, a.k.a., “CAM.” There, he would commit to investigate all the weird “alternative” therapies—including snake venom, he once told me—that he had been hearing about from the ME community. I found the word alternative not quite accurate since there were no first line therapies available.

Having lost his point man on ME, Fauci wanted to get ME out from under the purview of his infectious diseases institute (NIAID) as quickly as possible. The same year, 1999, he called upon then-NIH director Harold Varmus, an NIH administrator who, according to gossips inside NIH, was easily pushed around by the heads of powerful institutes within NIH.

Fauci advised Varmus to move “chronic fatigue syndrome” out of NIAID and into the dead zone of the ineffectual Office of Research on Women’s Health (OWRH) at NIH, a stunningly irresponsible and cynical decision, although in keeping with Fauci’s history in ME. Coincidentally or not, Fauci made this move on the heels of a General Accounting Office report critical of the NIH's history in "CFS."

Varmus did as Fauci asked.

The National Institutes of Health created ORWH to mollify women employees at NIH who had sued the agency in the 1970s for sex discrimination. The new office was supposed to guarantee that more money was spent on women’s health concerns in an agency that previously gave little thought to including women in clinical trials or medical research. Unfortunately, the women running ORWH demonstrated faint interest in ME, certainly when compared to their other interests in, say, menopause. Nor did this office have scientists, labs, authority to commission research or direct money within NIH. In other words, OWRH was akin to a janitorial closet where ME sat for years and years with the mops and brooms, out of sight and out of mind. In 2013, for instance, or fourteen years after ME came under the purview of this entity, NIH reported it had spent $5 million on ME that year, the price of a luxury studio condo in Manhattan.

Stephen Straus died of glioblastoma, an aggressive brain cancer, in 2006. The Fauci-backed scientist who had published mostly garbage science about ME, who had spread his false gospel about the psychiatric underpinnings of ME around the world in grand rounds presentations and speaking engagements before large gatherings of doctors, was silenced. The damage was done. Straus inculcated a generation of doctors and medical school professors around the world into the psychiatric theory of ME that still lurks like toxic dust in every hospital, doctor’s clinic and medical school lecture hall in the world. Straus’ larger than life, painted portrait hanging at NIH commemorates his contributions.

V.

Insight into Fauci’s brain was provided as recently as 2020 by the Wall Street Journal, which published an interview with Fauci by reporter Ben Cohen on April 16th that year, the first year of the Covid pandemic. Fauci was enjoying a moment of super-stardom, greater even than his AIDS Czar acclaim that began with the employment of antiretroviral drugs. “In Fauci We Trust” T-shirts and Fauci bobble-head figurines were the rage. Early AIDS activist and MSNBC journalist Rachel Maddow described him as “a singular figure in American history and in American public service. There has never been anyone else like him, and there never will be again.”

The Journal’s Cohen wrote the following:

"I’ve always wanted to be involved with diseases that were very, very serious,” Fauci once said. “I would rather be involved with patients who have fatal diseases than those with diseases that are just an annoyance. That just happened to be my bent. I wanted to be where the action was.”

Fauci’s medical philosophy as outlined above explains a lot. The tragedy is that Fauci got to decide for so long which diseases are just an annoyance and which were very, very serious—and yet he clearly couldn’t decipher one from the other. The fact that ME has a long history of female predominance cannot have helped the cause for the pint sized Fauci. In his mind, ME and, say, athlete’s foot were on par. Clinicians and bench researchers have unveiled remarkably similar, even identical abnormalities in AIDS and ME ever since the two maladies exploded in the mid-1980s.* I wonder if the prejudicial way with which government scientists chose to ignore these similarities would have been tolerated absent the wholesale indifference of the government’s top infectious disease doctor.

Considering that his job was to protect the public health, Fauci’s failure has been outsized, unspeakable. A disease hardly anyone had heard of in 1984 today afflicts more than one in every one-hundred US residents (1.3% to be exact). That’s the latest (Dec. 2023) head count from the Centers for Disease Control. By any measure, 1.3% is a phenomenal prevalence rate, equivalent to 3.3 million according to CDC, but that’s not counting the nine out of every ten patients CDC claims are uncounted. As if I have to tell this readership, most doctors have no idea what ME is or how to diagnose it.

Considering this outcome was by no means inevitable, the loss of human capital signified by CDC’s prevalence statistics is breathtaking. Among those millions who have spent so much of life in their beds, how many could have achieved instead an accomplishment equivalent to solving AIDS—or ME? Or written a novel with the cultural impact of Catcher in the Rye? Or emerged as another Basquiat or Hockney? Or sung like Jessye Norman? Few seem to consider these profound losses when the disease is ME. The notion that ME is, in some difficult-to-articulate way, volitional continues to rule the day. Any awareness that people with ME might have otherwise led productive, important lives had they not fallen ill is absent from public discourse about the disease. Compassion accorded to victims of other globally disabling maladies—cancer, heart disease, stroke, Parkinson’s—is missing, too.

If blame for this state of affairs can reasonably be placed at anyone’s feet, it must land on Fauci’s designer loafers.

Fauci is apparently blissfully unaware of the fact that millions of American children and adults have felt the same fear and physical devastation he describes, not for five days but for decades. Take Fauci’s week of West Nile, multiply by 52 and you get one year of ME. Multiply that by twenty or thirty or forty, and you face the real nightmare. ME sufferers would kill for a bout of Fauci’s West Nile in exchange for what they endure.

Not long ago, Fauci actually spoke the words “myalgic encephalomyelitis” publicly, the first time I have ever heard him do so, which let me know he knows how to pronounce its eleven syllables. But his mention was simply to point out that federal money was better spent studying Long Covid.

Classic Fauci.

But then, why would Fauci want to see ME recognized as the enormous medical crisis it is given his outsized role in submerging it? He can’t possibly rehabilitate his ME legacy at this late date by unwinding past deeds. In future assessments by medical historians, Fauci’s lapses in ME may overshadow his accomplishments in AIDS. One thing is certain: his place in the pantheon of public health heroes is forever marred by his career-spanning malpractice in the realm of ME. His outrage and shock over the fact that there is presently no cure for West Nile, a disease that in its neuroinvasive form has infected 741 people in the U.S. this year so far, is just so laughable.

* See Neenyah Ostrom’s new substack for her discussion of a new paper identifying AIDS-like immune aberrations in ME.

Copyright 2024 Hillary Johnson. All Rights Reserved.

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