Copyright Hillary Johnson 2024. All Rights Reserved.
Last week, the NIH held a symposium for the purpose of elucidating its recently reported findings in a case-control study of ME. In 2016, researchers at the National Institute of Neurological Disease and Stroke (NINDS) undertook this study with fanfare, orchestrating press coverage that included a Washington Post front pager featuring a patient (and former NIH employee) sitting on a hospital bed, while NIH director Francis Collins sat next to him, a lanky arm draped around the patient’s shoulder. The plan in 2016 was to study forty patients. Ultimately, NIH scientists selected seventeen as bona fide.
Patients who tuned in to the NIH symposium online may have been surprised to find themselves the subject of a short sermon from Avi Nath, an expert in brain infections and principal investigator. In a commentary that seemed less than extemporaneous, Nath said:
“I really wanted to directly address the MECFS community. I want you to know that as physicians and researchers, we are deeply committed, and we have a very strong conviction to treating this illness and to finding cures for the disease. We’re your partners, we have the same shared goals, and I think that’s important for you to realize. If we walk together, I think we can achieve the insurmountable. But as in any partnership, healthy criticism and respect for one another will help us grow, because we are really on the same side.
All the same when you doubt our intentions, and pick apart every single word, you also tear us apart. It causes pain and suffering on both sides. And it demoralizes us and shatters our goals. But you have a phenomenal team of over seventy-five physicians and researchers who have devoted a huge amount of time and effort to understand the fundamental basis of ME/CFS. They are the world’s experts in the field and they took on this project on top of everything else that they were doing. When we asked them to lend their expertise to the project, each one of them said yes, and they delivered.
Together I think we can really make a huge difference in this disease, but it’s important that we work together and not against one another.
So, I think this is an opportunity to discuss our findings. And I urge you to not to miss the opportunity to thank these researchers when you get a chance. These researchers are really shining the light on the path that we need to follow, and holding hands together we will find treatments and cures that we desperately need.”
Taken in isolation, Nath’s words are poignant. But does Nath know enough about his institution’s history to dare ask people with ME to send thanks to the NIH staff involved in this study? His suggestion that patients should express gratitude for anything NIH does at this late date—especially a study many scientists and doctors, not just a few vocal ME patients, consider “underpowered”—is, as the kids say, cringe.
First, Nath’s comment that the scientists who participated did something over and above what they were required to do, is in itself an admission of the place ME holds today and has always held in the NIH cosmos. Why weren’t these scientists assigned to the work on a full-time basis when the study began? Why is it acceptable that a study of a disease that afflicts 1.3 out of every 100 Americans, causes profound, life-long disability, and is likely transmissible no matter how NIH wants to spin it, took nine years? This history suggests ME continues to stand at the end of the line, treated as a disease NIH will address only after important, more pressing research is accomplished.
“It demoralizes us and shatters our goals.”
To my ear, this admittedly mournful statement carries an undercurrent of “Your criticisms/analysis/commentary on our work is so painful that we may just stop here and go no further if you continue.”
Nath’s words speak of his own demoralization, but I’m unconvinced that he has the moral authority to snap at patients because they failed to stand up en masse in gratitude. Yes—ME patients took an intense interest in his study and a few vocal patients criticized it. Scientists criticized it, too, but Nath doesn’t mention he’s demoralized and shattered by critical scientists. Should it be a surprise that many ME sufferers are fully engaged in the outcome of the first intramural study of ME at NIH in decades? Given the way they have been treated by federal scientists, one might expect them to act like whipped dogs, but they didn’t.
I wonder how much Nath knows about the attitudes toward ME that pervaded the NIH beginning in the 1980s and the destructive, some might even say lethal, policies that resulted.
Here’s but one example that has always been a standout to me:
The last time NIH published a paper of any note on ME was 1991. NIH investigator Stephen Straus, writing in an obscure psychiatric journal, claimed ME sufferers were mentally ill long before they acquired ME. That study included twenty-one patients Straus had hospitalized at NIH for the purpose of conducting an Acyclovir trial. In Straus’ hands, Acyclovir failed. He nevertheless found himself with access to a captive group of ME patients and seized that opportunity to send an NIH psychiatrist to their bedsides. Straus failed to alert them that they were about to be subjects in a psychiatric study. Some patients admitted they had a fear of spiders or of heights or that they were depressed. Such were the “mental illnesses” Straus uncovered. NIH typed a press release with an all-caps headline, “LIFETIME HISTORY OF MENTAL ILLNESS IN PEOPLE WITH CHRONIC FATIGUE SYNDROME” and sent it to five-hundred media outlets.
Imagine the impact of such a paper on the lives of people with ME. What a bountiful gift it was to insurance companies, doctors, employers and anyone else looking for reasons to abandon clients, employees, friends and relatives with ME.
Paul Cheney, MD., told me at the time that he had spent three hours in a deposition with an attorney representing the husband of a patient. The attorney used Straus’ paper and other claims by Straus that ME was a psychiatric affliction of women as evidence against her. Cheney countered Straus’ claims, but the young woman lost her case and was left to the vagaries of the Social Security system.1
Cooler heads who examined Straus’ data discovered the rates of acrophobia and arachnophobia and depression that so impressed Straus were no higher in ME patients than the population at large. NIH failed to follow up with the 500 U.S. media outlets about the mistake.
Do the NIH efforts to publicize Straus’ conclusions sound like overkill? ME patients certainly saw it that way. When they papered congressional offices with letters begging for Straus’ firing or reassignment, Straus’ boss Tony Fauci whisked Straus from Bethesda to Capitol Hill. The two appeared like authoritarian behemoths in the office of an influential congressman. Fauci warned the congressman, who had a small room in his office lined with file cabinets stuffed with letters from ME sufferers, that he needed to tell patients to back off, Straus wasn’t going anywhere. And for that matter, Fauci suggested, Congress needed to back off all matters related to ME. I interviewed the congressman about this visit, but his administrative assistant who was present gave me a colorful blow-by-blow account of this meeting, too. The congressman, reportedly awed by the nation’s AIDS Czar sitting across the desk from him, dutifully complied. Coincidentally, in 2013 the the John Edward Porter Neuroscience Research Center opened on the NIH campus—named for the congressman Fauci and Straus visited in 1991.
Did I mention Fauci turned down offers of money from Congress to fund ME research, telling the politicians (who were hearing from their constituents) that not enough was known about ME to invest in the disease? Did I mention that this went on for years while more and more Americans dropped from sight, their lives effectively ended? Or that while Fauci was misleading—whether intentionally or not—Congressional appropriation subcommittees, tens of thousands of ME sufferers were committing suicide all over the world, death being preferable to life with ME?
I realize that for many these accounts may read like a tale from Middle Earth. But even if you don’t care about this history, consider that you might not be sick and disabled yourself right now if NIH had responded to a public health crisis in real time.
Forty years after an epidemic of ME began, NIH has taken its first serious deep dive on ME. The institute is using its research as a bragging point, claiming NIH has provided the first evidence to prove ME is a biological disease. And last week the lead investigator complained that criticism of the study by ME patients was shattering and demoralizing and asked patients to send thanks when they get a chance.
Nath may not realize he is upholding a four-decade tradition. NIH has a lengthy history of telling ME patients to sit down, shut up, and be grateful. Are cancer patients similarly admonished? Do NIH Alzheimer’s researchers ask for thanks from the families of Alzheimer patients?
In 1993, Fauci’s top deputy told me ME patients should feel grateful—his word—that Stephen Straus was working on ME because Straus was the only NIH employee who had any interest in ME. The deputy’s comment was so passive-aggressive, it did momentarily silence me as I parsed the layers of cruelty. He also told me Fauci couldn’t understand why ME patients were so “upset”—didn’t they realize mental illness had lost its stigma?
Many people who fell ill in the ‘80s, ‘90s, aughts and 2010s are still alive. They may have been impoverished and erased from the culture, but I’ll hazard a guess that many of them know enough about this history to understand they’ve been profoundly mistreated by the American federal health agencies. If you spend any time around medical personnel or scientists who are knowledgeable about ME, you’ll soon realize most of them think so, too.
Second, maybe patients would feel more optimistic about the NIH’s first foray into the biology of ME had there been some indication that NIH intended to follow up with increased focus and attention to the disease. But I notice the hoopla around the study stops short of any specific commitment to performing additional in-house research. Nor has NIH promised to start funding grant applications submitted by academics in sums proportionate to the ME crisis. If NIH has in 2024 proved to itself that ME is real, where is the multi-billion dollar set aside other major diseases get?
So far, I have read nothing in the discussion surrounding the NIH study to suggest the Bethesda agency plans to change its ranking of ME as the least important disease they know about. Instead of asking for thank you notes, show us the money.
NIH’s Vicki Whittemore let slip recently that Columbia’s Ian Lipkin will be funded again with a five-year grant, although she named no dollar figure. This will be the third time Lipkin has been funded. That’s great, on its face. But where are the other voices, approaches, ideas and interests of a wide variety of scientists that are clearly needed to make progress?
Instead, I read that in future NIH plans to invest a lot of money and staff-hours in long Covid, with a suggestion that doing so will somehow, magically, resolve ME. Fauci has advised that ME should not be studied, but long Covid should be studied because at least the pathogen has been identified.
If NIH really believed these diseases are so alike that one can be substituted for the other, why not reverse the order? ME has been around for at least ninety years. The scientific literature has burgeoned in the last three decades because the disease has burgeoned. Life expectancy of patients is said to be fifty-five years, currently about twenty-two years less than the rest of the US population. The attack rate is extremely high. Suicide is a leading cause of death. Why must ME perpetually sit on the back-burner—or not even have a place on the stove?
Lastly, I’m not impressed that attitudes about ME sufferers have changed at NIH. In fact, increasingly the stigmatization feels to me as intractable as racism. There seems to be a need to dehumanize patients to make the abuse seem justifiable. It’s handed down through the generations, the rhetoric barely changing. Nath himself is guilty of the need to corral ME victims into a corner with the language of contempt.
At a day-long homage to Ian Lipkin on April 3, for instance, where luminaries of the infectious disease world celebrated the career of the Columbia University virus hunter, Avi Nath joined a panel about ME. At one juncture, Nath praised the ability of Lipkin to inspire trust in “…even the population of ME/CFS as difficult as they might be…”
It’s disturbing that an NIH researcher of his pay grade is carrying this old trope into the present day to an audience of infectious disease specialists, especially after the study he just helmed found biomarkers. Government scientists have felt free to characterize ME patients as “difficult” or worse since Stephen Straus owned the narrative. Straus opined in countless grand rounds how “unpleasant” it was to address the complaints of ME sufferers. Simon Wessely and other British ME psychiatrists went further, in Wessely’s case claiming that patients were as dangerous as animal rights extremists. Wessely also told the BBC in all seriousness that he felt safer in Iraq and Afghanistan, where he was unlikely to encounter an ME advocate, than London.
Vicki Whittemore, sitting on the same April panel as Nath, volunteered that when she was hired in 2011 to take on ME at the NIH her superior asked if she would be willing to work with ME advocates “who are sometimes a little challenging,” in Whittemore’s delicate phrasing. Was interacting with difficult or, ahem, challenging, patients be a condition of the job? Would she, being female, be willing to be NIH’s patsy, leaving male scientists the freedom to proceed with the knowledge they would be relieved of contact with patients?
It’s fascinating to me that government scientists speak with admiration about AIDS activists of the 1980s and 1990s. The latter stopped traffic on Wall Street, burnt effigies, threw condoms filled with ketchup at the NIH scientists on the Bethesda campus, and labeled Tony Fauci a murderer. When a few ME patients criticize an NIH paper on Twitter, the lead investigator has a melt-down. Did he, in fact, threaten to pick up his marbles and go home?
Where are the heroes? Is EVERYONE so worried about obtaining grant money from NIH that no one will say anything about this hypocrisy? Or call out the denigrating, negative characterization of an entire patient population estimated to be near four million people in the U.S.? Is money really the bottom line?
Perhaps the government’s toxic characterization of ME patients persists because so many patients are women. Given the bro science that holds sway at NIH, maybe it’s easy to obscure the primary issue. But when you put the gender issue aside, there is still a disease that needs solving.
Being “difficult” is not part of the sign-symptom complex of ME. But informed patients cannot help but recoil from decades of malfeasance, negligence, defamation, poverty and physical agony in the face of an unresponsive federal health establishment. If anything, patients need to be greatly more “difficult” rather than less.
I’ve seen a glut of Jane Goodall quotes on the Internet lately. Here’s one: “It actually doesn’t take much to be considered a difficult woman. That’s why there are so many of us.”
How can anyone who knows very much about this terrible history look upon anything the NIH does today with a less than jaundiced eye, especially when the winking, defamatory banter remains unaltered and broad disrespect of patients continues?
It strikes me that before NIH can expect gratitude for anything, administrators at the highest executive level of the NIH must acknowledge that NIH made a profound, decades-long mistake with ME. Further, they need to issue a formal apology to the millions of patients who have been harmed by that mistake, as well as to the shattered survivors of patients who have died, including especially their children. NIH especially needs to abandon any effort to protect the legacies of men among their ranks who acted like thugs in past decades. As journalists and medical historians and medical ethicists peel back the reality, all will be revealed to the public, anyway.
No one individual need be named or blamed in this so-far imaginary apology. NIH need only say there was an institutional failure of scientific judgement, a harmful bias that spread throughout the agency. It needs to admit it took far too long to rectify these failures.
In short: biased, slanderous authority figures no more. The dysfunction has been inside the NIH, not in the patient population.
To be credible, the wordsmithing of this fantasy apology is up to NIH. One critical word must be employed, however: Sorry. As in, “We are sorry we failed. We have learned from that experience, and we will try not to fail you again.” The apology I envision would require sincerity equivalent to the depth of feeling Nath used to chastise patients and express his own trauma.
Nath is upset by criticism; he wants it to stop. Right now. But the scales of justice tell us who has the weightier grievance by far. Instead of asking for gratitude, Sorry might be the balm to start the healing.
The NIH may have the power to wipe the slate clean. Does anyone at NIH have the wisdom to do so?
Copyright Hillary Johnson 2024. All Rights Reserved.
In 1988, before he published his 1991 paper in the psychiatric journal, Straus wrote an influential editorial in The Journal of Infectious Diseases in which he solidified his view that ME was psychiatric. Staff at the Centers for Disease Control seemed delighted by Straus’ full embrace of the mental illness hypothesis. Not that they had ever been restrained, but they seemed freed by Straus’ editorial to expound and speculate as never before.
Gary Holmes commented to me at the time, “I liked the paper. Straus said it in such a way that he thinks this is what is going on—that it’s psychological…And there is, in talking to hundreds of people with this, a definite personality.”
Do tell, I said.
“They’re very aggressive,” Holmes told me. They’re very defensive. I’ve never really tried to put it into words, but I can picture the typical person. Frequently they make their symptoms sound so much worse that you would imagine from looking at them. These are not your average American citizens. They are out to get things done—and fast. They’re very compulsive. They’re very aggressive people. And they want this disease cured.”
Records I obtained from that year reveal that agency staff were highly focused on the possibility that ME was a character defect. One typical internal memo proposed organizing “…an effective battery of psychological tests aimed at processing possible roles of personality type” in the disease.
Brilliant article, brilliant writing. Hillary is so good on the politics of ME
Thank you for sharing details about the systemic institutional bias at NIH that has been rampant for decades. A sincere apology from NIH to patients would be a good place to start.