A Disease Accorded all the Credibility of a Rape Victim

The National Institutes of Health brings forty years of anti-science baggage to bear on Myalgic Encephalomyelitis and claims dominance in the field

NIH clinical center, a.k.a. Building Ten, where researchers conduct clinical trials. Famous at one time for being the largest brick building in the world.

Before I move on to other topics, it seems imperative to address the long-awaited, long-overdue—by several years—NIH study results about Myalgic Encephalomyelitis published in Nature Communications on February 21, 2024. After all, this paper was the first effort in decades by the famous agency in Bethesda to address this disabling disease—conservatively estimated to afflict 65 million globally. As such and given the 800-pound gorilla status accorded NIH scientists by the world’s science press, the conclusions of this study already have and likely will continue to far outweigh their actual worth for quite possibly years. It’s happened before.

In broad strokes, one problem with the NIH effort is that the agency has managed to drag the scientific dialogue about ME into the distant past. Forty years after an epidemic of ME began in tandem with AIDS, the mediocre bros at NIH continued to doubt its existence well into the 2010s despite an avalanche of evidence to the contrary. Their hypothesis in their new case-control study of seventeen patients seems to have been driven by little more than the antediluvian query: “Is ME real?” As a result, NIH has reset the clock to 1984. We’re on Rip Van Winkle-time. Patients are back in that disorienting, degrading cardboard box again. Journalists had quit writing stories about “is it real.” Now they’re back at it.

Yet, this time the government’s scientists are reporting that ME just might be real. You can almost hear the quaver in their voices. Understandably, those who were in highchairs throwing their mashed peas at the wall in the 1980s or 1990s might ask, Isn’t that progress? To the long suffering, people who’ve lost most of their one precious life to ME, it’s a tough “Yes,” especially when the question “is it real” was answered definitively decades ago. Viewed through that lens, the paper is another reminder of how much time and human capital has been lost, and how intractable the federal health establishment has been.

In 2024, NIH scientists are still in the cave making handprints and drawing quadrupeds on the walls, but they’re calling their recently published handiwork a breakthrough.

NIH should have been aggressively pursuing the identity of a pathogen, modes of transmission, antivirals, and possibly a universal vaccine in the 1980s and 1990S. They should have provided billions of dollars to academic scientists who were infinitely smarter, more reality-based and less politicized than government scientists. When scientists like UCSF’s herpes virus expert Jay Levy, or the University of Pittsburgh Cancer Institute’s top cancer epidemiologist Seymour Grufferman and others of their caliber were clamoring for grant support to help them identify the cause of ME in the late 1980s, the NIH showed these heavy hitters the exit—and they reluctantly took it. You can’t run a lab or an academic department on fumes.

Executives at the NIH withheld funds for ME research as a matter of agency policy. When a senate appropriations committee—whose members were feeling the heat from patients and their families—offered Tony Fauci money to pay for ME research, Fauci cordially turned the senators down. Not enough was known about ME, Fauci explained, to merit investment in it. His testimony is on the record.

Not one senator on the committee challenged Fauci’s curious logic. That was how the dapper, 5’7” scientist shut down inquiries about ME at the highest levels of government for the next twenty years. That was how ME became the lowest-funded disease among all diseases, with male pattern baldness a notch above it on the NIH budget. Did the fact that an estimated four out of every five patients suffering from ME was female factor into the equation? Fauci certainly knew about that ratio. He directed NIH chief Harold Varmus to dispatch ME to the Office of Research on Women’s Health, a place I have long envisioned as a broom closet filled with mops, buckets and Pine Sol. The ORWH had no labs, no scientists, no ability to fund research, no power and no interest in ME.

Rather than promote research, government scientists coddled and promoted the Crazy Ladies theory at every turn, rewarding members of the press with access if they played stenographer, denying access to reporters seeking to understand the cognitive dissonance between what patients and their doctors were saying and what the government was saying.

NIH is DECADES late with its new study, which over the course of 24-pages of graphs, illustrations and prose leaves the reader scratching their head: "They devoted nine years and $8 million to this?” In 2024, NIH scientists are still in the cave making handprints and drawing quadrupeds on the walls, but they’re calling their recently published handiwork a breakthrough.

NIH has ignored ME for two human generations and now claims its study of seventeen people is definitive but prior research wasn’t. Here’s the press release language, dissing four decades of ME research with a grand sweep: “Many studies have identified immune, microbiome, and other abnormalities in ME/CFS, but the results tend to be inconsistent and exactly how these markers relate to, or cause fatigue and other symptoms is unknown.”

By all means identify markers, but their relation to “fatigue” is irrelevant. Fatigue is not the disease. ME is not fatigue. How many times and in how many ways can this be stated? The sly, state-sponsored renaming of ME that occurred in 1988 (“chronic fatigue syndrome”) when the Centers for Disease tried to calm nerves about the deluge of ME cases continues to warp research objectives.

ME is a central nervous system disease. All such diseases are notable for the exhaustion they induce in sufferers. What prevents ME patients from walking, or lifting their heads off their pillows, cannot reasonably be characterized as “fatigue.”

Coolly ignored by NIH is the fact that investigators have produced an enormous body of research since the 1980s about ME immunology, central nervous system abnormalities and more. These studies are not generally inconsistent as NIH claims. There also have been sophisticated papers by top scientists in their field that link specific immune, metabolic, hormonal and brain aberrations to specific symptoms. I’m thinking of UC San Diego’s mitochondria expert Robert Naviaux, Stanford’s clinician researcher Jose Montoya and immunologist Mark Davis, and Cornell’s molecular biologist (and National Academy of Sciences member), Maureen Hanson. NIH is just regurgitating old cliches ME deniers have used to discredit excellent work.

The agency’s own efforts to link aberrant biological findings to symptoms seems to have resulted in a new round of psychological appraisals with the use of psych-based phrases like “effort preference” a phrase that incorporates psychological factors into medical symptoms and appears no fewer than twenty-six times in this paper. For the most part, no matter what their objective experiments are telling them, the orchestrators of this study just can’t stand to let go of their dearly held superstitions about ME.

It’s not easy to take NIH’s deep dive seriously when its discussion of patients versus healthy controls begins this way: “There were no clinically relevant findings on physical examination…or laboratory testing in either group.” Nor were there differences in “sleep dysfunction.” Nor were there differences in “Head-up tilt table testing for up to 40-min.” And “No excessive orthostatic hypotension, no excessive orthostatic tachycardia.”

Nor did NIH find any differences in any of fifteen different neuropsychological tests (which despite the nomenclature are IQ tests, not psychological tests), nor any differences in NK cell frequency.

Perhaps because NK deficiency was identified in ME as long ago as 1987 and has been replicated so many times it could easily be named a biomarker in a clinical definition as a substitute for, let’s say, “fatigue,” the NIH authors make a rare admission that their sample size was so small as to put their findings in question.

“Previous studies suggest that NK cells function is decreased in ME, which may not be evident in our study due to small sample size.”

Nor did NIH find brain lesions, when in fact brain lesions have been commonly identified in the disease since Paul Cheney, on a hunch, ordered an MRI brain scan for a 12-year-old ballet prodigy who couldn’t balance on two feet much less one. That was in 1985. In 1992, the Annals of Internal Medicine published a study of 260 ME patients. Seventy-nine percent of the patients had brain lesions. Two Harvard neuroradiologists, who were blinded to the disease and to each other, looked at every scan. They agreed 100% of the time, a demonstration of unusual concordance.

Maybe the percentage of brain lesions in the Annals paper was an aberration. Maybe not. Thanks to a dysfunctional NIH, there has yet to be another study of similar size that looked for brain lesions or anything else. Unlike patients in the NIH study, thirty percent of these patients were either bedridden or living as shut-ins. The patients were not selected by committee or by an inept skeptic, but by the internal medicine specialists who treated them. My point is, zero lesions on MRI imaging suggests the NIH patient cohort was either invalid or not very sick.

Given that the NIH study was underpowered in terms of the numbers of patients who were studied, and that participants were well enough to travel to the NIH and undergo days of testing, the plethora of normal findings may be less than surprising. But the findings distort the reality of the disease, skewing toward the most mildly afflicted. The government-issued ME definitions that were used by NIH are woefully non-specific, lacking a single biomarker but including phrases like, “unrefreshing sleep” and “fatigue that is profound.”

Avindra Nath, senior author of the paper, “Deep phenotyping of Post-infectious Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” Section of Infections of the Nervous System, National Institute of Neurological Diseases and Stroke

Exceptionally telling is the fact that four among the seventeen patients spontaneously recovered after participating in the study. It’s remarkable that in this tiny population of seventeen, almost twenty-five percent of the total experienced full recovery. Do you believe in unicorns? Consider that almost 25% of the cohort likely weren’t ME patients. NIH might have considered excising that data and comparing them to the thirteen patients who didn’t recover. On second thought—GIGO.

If NIH was evaluating thirteen bona fide patients, then they spent $615,384 per patient. (Check my math.) I suppose when you involve close to seventy-five bench scientists that’s what happens.

Brian Walitt, who has been excoriated on Twitter and elsewhere for his view in 2015 that ME was a psychosomatic disease, was the selector-in-chief. Another five clinicians were paid to evaluate Walitt’s selection if doubt about ME bona fides arose. They were Dan Peterson, Lucinda Bateman, Ben Natelson, Andy Kogelnik and Anthony Komaroff. How many times these doctors, and which among them, were called on to adjudicate cases is not discussed.

One irony is that NIH desperately wanted to avoid being bashed for its patient selection criteria as so many others have been—frequently by NIH. The government investigators bragged about their selection techniques in 2015.

Although nearly five-hundred patients applied, somehow the forty patients NIH said they were going to study dwindled to seventeen. Today, they’re blaming the shortfall on the Covid epidemic, but NIH had four years to corral ME patients before the Covid epidemic began. Let it not be said that NIH rushed headlong into anything here. The millions with ME had already waited for decades—what was another nine years?

At one point during those early years from 2016 to 2020, investigator Brian Walitt took the stage at an ME conference at NIH and asked patients in attendance to persuade their friends and relatives to sign up as controls. I found Walitt’s plea alarming because it laid bare what I consider the most troubling bias at NIH: ME is not transmissible. However unpopular with patients and public health officials alike, that theory is far from being disproved. Indeed, logic dictates that transmissibility is the most rational explanation for the spread of ME, unless you think car accidents and divorce and viruses can cause ME. The immune system in ME has been screaming “virus,” not “divorce.”

In fact, for what seems like eons, the government has looked at the immunology of ME and pretended it’s in a supernatural category that excludes it from the precepts of germ theory. The fairy tale has hung around so long that it’s hard for people to think critically about it.

Were any of the healthy controls close friends or family members of patients? The paper doesn’t say.

If we had a federal health establishment that really wanted to eradicate ME, that’s where NIH would have spent its $8 million: epidemiology. Evidence for infection has been present for decades. But NIH researchers were too hung up on satisfying their perennial question: is it real? And, what’s causing the “fatigue?” As if those questions haven’t been asked and answered a thousand times already. And that’s just one way the government wasted nine years.

Here’s what I found to be significant about this paper. After the authors describe evidence for inflammation in women sufferers that is driven by “immune dysregulation” in the cerebrospinal fluid (which bathes the brain), they write:

“The cause of immune dysregulation is not clear but may suggest the possibility of persistent antigenic stimulation.” (italics added)

That’s code for infection.

And after describing all the hell unleashed on the body by ME, they reiterate, “One possibility is that these changes are related to antigen persistence of the infectious pathogen.”

And lastly: “…We posit this hypothetical mechanism of how an infection can create a cascade of physiological alterations that lead to the (ME) phenotype.”

Translation: Symptoms are caused by a pathogen.

Thus, NIH may be slouching, reluctantly, toward an understanding of ME that reflects what’s already known by those who have been studying the disease for years.

In 1992 authors of the Annals paper I cited above, who included Anthony Komaroff, Paul Cheney, Dan Peterson, and Robert Gallo, concluded: “Neurologic symptoms, MRI findings, and lymphocyte phenotyping studies suggest that the patients may have been experiencing a chronic, immunologically mediated inflammatory process of the central nervous system.”

They also wrote that their data provided enough evidence to suggest the disease was transmissible.

That was thirty-two years ago. A person could have been born, graduated from college and become a professor of literature, a junior partner in a law firm, a doctor, a movie star, a husband and father, or a member of the New York Philharmonic in that time. Unless they had ME.

Now that the NIH has gone at least halfway to assuring itself, one hopes, that ME is “real” will more federal money be lavished on this starving disease, which CDC announced this week had felled 3.3 million Americans (up from 2.5 million a decade ago)? Or will NIH, considering itself absolved or well-armored against accusations of negligence, move on to other pursuits?

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Final thought: From the beginning, NIH and it’s low-prestige sister agency in Atlanta, the Centers for Disease Control, imposed a standard of proof for ME that couldn’t be met, just as courts impose impossible-to-meet standards of proof upon rape victims.

When it came to ME, the question wasn’t, “What were you wearing?” It was, “Aren’t you depressed?”

Prosecutors ask rape victims: “Why didn’t you scream?”

Doctors tell ME patients, “You don’t look sick.”

Prosecutors ask rape victims, “Why were you walking alone?”

Doctors ask ME patients, “Have you been under stress?”

Prosecutors blame rape victims: “Why did you get in the car with X?”

Doctors tell ME patients, “You need to exercise more.”

Prosecutors intimidate rape victims: “There are no witnesses—it’s your word against his.”

Doctors intimidate ME patients: “I’m a doctor and I’m telling you there is nothing wrong with you.”

The likelihood of rape claims actually being prosecuted is 1.3 percent of all reported rapes.

Copyright Hillary Johnson, 2024

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