Anthony Fauci’s take on ME/CFS, long COVID, and other post-infectious diseases provides an informative counterpoint to Phillips and Williams’s stunning proposition that federal funders “prioritize care delivery over research” – thus essentially freezing those research fields – and the development of new treatment options – leaving millions of people hobbled to the present status quo – not a pretty sight.
Indeed, the author’s characterization of the ME/CFS field as being “singularly unproductive” with regard to treatment options is decidedly at odds with their aspirational goal of providing “comprehensive care, multi-disciplinary expertise, and professional empathy through well-described (but frequently inaccessible) symptom management and functional rehabilitation pathways” to people with long COVID, ME, post-treatment Lyme disease, etc.
Phillips and Williams’s clarification, later in the piece, of what their notion of ‘comprehensive care, etc.,’ indicates that it’s simply a focus on “prevention, improved prognosis, access to empathetic care and quality of life issues”.
The inescapable result given the poor treatment options available is a kind of long-term hospice care-like situation for millions of formerly productive Americans. With inconvenient diseases like long COVID, ME/CFS, fibromyalgia, PTLDS, and others out of the way, researchers can focus on other diseases.
Phillips and Williams’s proposal, then, essentially duplicates the paradigm under which the research efforts for diseases like ME/CFS, fibromyalgia, and PTLDS have functioned for decades; i.e., it will provide them with minimal funding guaranteed not to produce definitive results – or the interest of drug companies. Instead of shedding new light on these long-neglected diseases, their proposal will thrust them back further into the darkness; i.e. the so-called “invisible diseases” would become ever more invisible.
Into the Darkness
It’s in the darkness that we encounter Anthony Fauci, the former long-time head of the National Institute of Allergy and Infectious Diseases (NIAID). Interestingly, earlier in his career, Fauci appears to have duplicated Phillips and Williams’s path and gave up on ME/CFS. Over time, though, he’s come out the other end – and now strongly supports more ME/CFS, long-COVID, and post-infectious disease funding.
Fauci was interested enough in chronic fatigue syndrome (ME/CFS) in the mid-1990s to fund three ME/CFS research centers, but by the early 2000s, the same problems that have aggravated Phillips and Williams so much – the multisymptomatic, multisystemic nature and complex nature of the illness gave Fauci an “out”. Declaring that ME/CFS wasn’t a good fit for the NIAID – he booted it out – and shut down the three small ME/CFS research centers.
What Fauci failed to mention was that the multisystemic nature of ME/CFS made it a poor fit for any Institute.
As Fauci must have known would happen, the results were devastating. Thanks to the timely intervention of the Office of Research on Women’s Health (ORWH), the program found a home of sorts, but with no Institutes assuming responsibility for the disease, the funding mechanism employed – a Trans-NIH Working Group – was doomed to failure. As the NIH’s budget swelled and swelled over the next 20 years, funding for ME/CFS fell and fell until it reached its nadir about 6 years ago – only $6 million/year.
Fauci’s hobbling of the ME/CFS program made him a Darth Vader-like figure for ME/CFS community. He evinced no interest in the subject and made no public statements about it. He was simply a cipher – all we knew for 20-plus years was that he’d kneecapped the fledgling ME/CFS research effort – and we were all the worse for it. Our big hope was that he would retire and someone more amenable to ME/CFS would show up. Over time – thanks to Fauci and many others like him – ME/CFS became the most neglected major disease at the NIH – and it wasn’t even close.
Fauci, though, showed a different side in private. After several meetings with him, then Solve M.E. President’s head, Carol Head, reported that Fauci was polite, interested, and surprisingly well-versed in the research. Ian Lipkin reported that Fauci has long understood that ME/CFS is not a psychiatric disorder.
Fauci also supported the small 2015 effort to reinvigorate the NIH’s ME/CFS research effort and NIAID, with NINDS, became its two biggest supporters. When other Institutes dropped out of that effort last year, NIAID and NINDS picked up the slack.
Fauci never, though, assumed the kind of leadership role that NINDS director Walter Koroshetz has over the past five years. While Koroshetz frequently interacts with the ME/CFS, has produced blogs promoting ME/CFS research, and initiated the strategic plan effort underway, Fauci has remained a man apart.
Then came what Fauci said has been keeping him up at night for years – an airborne pandemic. It was always going to happen – an unavoidable consequence of rising population levels, the ability of modern transportation networks to rapidly spread deadly pathogens, and the ecological destruction that exposed humans more and more to animal-borne vectors.
The small post-infectious field had certainly provided warnings. The first SARS coronavirus, MERS, West Nile Fever, and the Ebola virus all left debilitated people in their wake. Studies indicated that Epstein-Barr virus, Giardia, Coxsackie, HIV, etc. could trigger mysterious long-term illnesses in a significant number of people. ME/CFS, of course, had been widely recognized to be a mostly post-infectious disease for decades. The emergence of long COVID was no surprise to those who’d taken the trouble to get acquainted with post-infectious illness.
Despite the fact that Fauci had been thinking about the consequences of a pandemic for years he, the NIH, and the medical system were caught completely flatfooted when its inevitable post-infectious consequences showed up, and millions of people are paying the price.
Fauci missed that boat entirely, but to his credit, he quickly recognized that a long-COVID/ME/CFS-like condition was showing up. In response to a question in July 2020, Fauci said that “some patients may have “post-infection syndromes” that resemble ME/CFS:
“You can see people who’ve recovered who really do not get back to normal, that they have things that are highly suggestive of myalgic encephalomyelitis and chronic fatigue syndrome—brain fog, fatigue, and difficulty in concentrating. So this is something we really need to seriously look at because it very well might be a post-viral syndrome associated with COVID-19.”
In 2021, Fauci knocked down the idea that the long haulers have a psychological disorder, stating, “A lot of times people think it’s a psychological disorder. It’s not.” In a special session about COVID-19 at the annual meeting of the American Academy of Neurology (AAN) in 2021, Fauci again brought up ME/CFS:
“We’ve been chasing myalgic encephalomyelitis and chronic fatigue syndrome without ever knowing what the etiologic agent was. Now we have an absolutely well-identified etiologic agent that should be very helpful now in getting us to be able to understand it. I hope we do; it’s been mysterious to us for years. Maybe this will give us a chance at a breakthrough.”
In October 2022, Fauci could have been reflecting on his own experience when he called long COVID a “public health emergency” whose insidious nature left it (like ME/CFS) open to neglect:
“(Long COVID) is very insidious beneath-the-radar-screen public health emergency because it isn’t that you have people who are hospitalized or dying but their function is being considerably impaired and, for reasons that are obvious, that doesn’t attract as much attention as a death rate.”
Demonstrating a clear understanding of the problems long COVID causes, Fauci asked:
“How come someone who is very sharp intellectually and very energetic all of a sudden can’t concentrate for more than half an hour on anything? And how come people who are polished athletes no longer have any exercise tolerance?”
Yet one wonders if Fauci really has gotten it about long COVID, ME/CFS, and post-infectious illnesses. The pandemic is over. Over a million people in the U.S. died, but we learned much about how to deal effectively with the coronavirus. Life had returned to something approaching normality for many of us – but it’s left behind many more sick people than it killed.
Yet, Fauci failed to mention the emergence of long COVID in the May “Five Lessons He Learned From the COVID Pandemic” article or in his Oct 18th Science article addressing the question, “What Keeps Me Up at Night“.
Despite its close connection to long COVID, NIH funding for ME/CFS is slated to decline about 20% this year. In January 2023, after 50 years at the NIH, the 81-year-old Fauci retired. Fauci subsequently became a Distinguished University Professor in Georgetown’s Division of Infectious Diseases.
Enthusiastic Private Citizen…
On Nov. 10th, in “What Tony Fauci Says about Long COVID and Other Postviral Illnesses“, Emily Mendenhall reported that as part of her research for a book on postviral syndromes, she’d interviewed Fauci, and Fauci was interested – very interested in the emergence of long COVID as well as ME/CFS. Despite the fact that as NIAID Director, Fauci did little to support ME/CFS research, he stated that he emphasized to her “how important it is to do more research on postviral syndromes.”
Fauci said that even before chronic fatigue syndrome had a name – back in 1968 – that he’d noticed people who’d failed to recover from a viral illness. In particular, “their ability to function” was compromised.
He provided something of a mea culpa about his unwillingness to support ME/CFS earlier in his career, stating that he had gotten “swooped up” in the HIV/AIDS crisis. He agreed that illnesses like ME/CFS don’t get the attention they deserve, leaving many people suffering without the possibility of a diagnosis, let alone a cure.
Mendenhall reported that Fauci emphasized how important it is to get “long-range, multiple-year funding that isn’t necessarily dependent on a result for renewal” (the kind he never provided, actually (lol)).
With that, Fauci came full circle. The man who’d booted the ME/CFS program out of NIAID because it hadn’t produced the results he’d wanted now called for a long-term committed effort that was not dependent on immediate results.
Contrast Fauci’s approach with that of Phillips-Williams who appear to be retreading Fauci’s path of two decades ago when he quickly, apparently to his regret now, tossed the ME/CFS program into the wilderness. Three years after the emergence of long COVID, and two years after calling for more research – they’ve already declared long-COVID research a lost cause.
Fauci led NIAID for over five decades and advised seven presidents, but in the end, he said, “I am just giving you my scientific opinion in my experience as an immunology, virology, infectious disease guy”, and that’s the point. Fauci battled HIV/AIDS and the coronavirus. He knows what a tough fight is like. He knows what the medical research field is capable of.
When Fauci was a friend of ME/CFS, he was never much of a friend and when he was an enemy, he caused a lot of damage, but he’s clearly changed his mind, and good for him for saying so. For me, I’ll take his expertise – not to mention his compassion – over Phillips and Williams, any day.
Here’s the thing, though. Fauci is always on the sidelines with ME/CFS. He’s never led with it, or long COVID, or post-infectious illnesses. If someone can get to Fauci, he’ll say all the right things, but has to be prodded. Phillips and Williams, on the other hand, are out there writing up their ideas and making waves.
Time will tell if Fauci will ever take a leadership role with these diseases, but one wonders if he’d like to exorcise some ghosts. To put it bluntly, a nation unprepared for long COVID happened on his watch. Asking the head of the NIAID to be prepared for every possible outcome is a bit much, but nevertheless, it did happen on his watch.
Time will tell what effect Phillips and Williams’s calls to turn off the ME/CFS, long-COVID, etc., research spigot will have. They appear to be a 2023 version of the naysayers who – as Fauci did 20 years ago – have been attempting to undercut the ME/CFS field for decades.
Fauci did it by kneecapping the ME/CFS program at NIAID, but it more often happens in more subtle ways. Mentors advise their students not to go into the field. Educators don’t teach about these diseases in their classes (or teach them poorly). Researchers who excel in getting grants for other fields suddenly find themselves shut out with ME/CFS, and now we have this call for an end to long-COVID and ME/CFS research efforts.
For now, long COVID is getting the funding. More long-COVID studies are being published all the time and the NIH’s RECOVER Initiative is finally starting to dig into long-COVID biology. We’re learning more all the time and the future actually looks bright.
The Phillips/Williams article – appearing in two major media outlets – though, indicates that long COVID has not extinguished the rot in the medical system that has allowed it to basically take a pass on millions of Americans who were simply unlucky enough to get the wrong disease. Surely we can do better.