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Has the Darth Vader of the ME/CFS Movement Changed His Tune?

fauci

Fauci’s done a great job with COVID-19, but his history with ME/CFS is not so positive.

Anthony Fauci has led the National Institute of Allergy and Infectious Diseases (NIAID) at the National Institutes of Health (NIH) for 36 years. The man must be doing something right. Neither HIV/AIDS, SARS, the Zika virus, nor the coronavirus pandemic has been able to knock him off track. In fact, Fauci’s emerging from the coronavirus pandemic more respected and undoubtedly more powerful than ever.

If you’ve been around ME/CFS long enough, though, you might have a different view of Fauci. It was under Fauci that NIAID withdrew support from the small NIH-funded ME/CFS research centers about 20 years ago. At the time, if memory serves, Fauci asserted that ME/CFS didn’t look much like an immune disease – that it was more a multi-system illness – and so he washed his hands of it – sending the single biggest ME/CFS research effort into oblivion.

It also tumbled the ME/CFS field into the darkness. After Fauci wiped his hands of it, the ME/CFS field existed in limbo at the NIH – unattached to any Institute or Office – until Vivian Pinn at the small Office of Research for Women’s Health (ORWH) took mercy and scooped it up. Pinn couldn’t do much for the disease, the ORWH didn’t get any funding for it, but she kept it alive at the NIH.

Research funding tanked, though. As Congress gave the NIH more and more money, funding for ME/CFS fell and fell until it reached a nadir at just $6 million/year in the mid-2010s.

As NIH funding tripled funding for ME/CFS dropped

Fauci never blinked. Fauci was like the man behind the mirror pulling the strings. What we knew for absolutely sure, though, was that he had no interest in this disease at that time.

Back then, we didn’t talk about the NIH director – we never dreamed we’d have a shot at him. Instead, we talked about Fauci, Fauci, Fauci. He was our Darth Vader.

When the tide started turning a bit for ME/CFS at the NIH, it was because of Francis Collins (Director of the NIH) and Walter Koroshetz (Director of the National Institute of Neurological Disorders and Stroke (NINDS)).

As Tracie White relates in her book, “The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son“, three things triggered Francis Collins’s interest: his personal relationship with Ron Davis, the “Brother Can You Spare A Dime” piece Brian Vastag wrote in the Washington Post, and the IOM report. Koroshetz’s interest is less clear – he did see ME/CFS patients at one time – but why Koroshetz has gone as far as he has – reinvigorating the Trans NIH Working Group, his visible presence at meetings and conferences, creating the NANDSC report, while his colleagues and peers ignored it – is unclear.

While we would all like more from Collins and Koroshetz, we should remember what it was like before they showed up. No interest from the top, very little support, certainly no public recognition. It was like we didn’t exist. It’s hard to imagine that the three small NIH-funded ME/CFS research centers and the NIH Intramural study would exist if it had been up to Fauci.

Things started turning for ME/CFS and Fauci a bit with the publication of the IOM report. Fauci and his senior staff meet with Carol Head, the leader of Solve ME/CFS in 2015. Carol reported that Fauci and his staff seemed knowledgeable about the illness, then, and followed up with them.  NIAID also played a major role in the XMRV saga, and since the NIH’s minor re-invigoration of ME/CFSD research, it’s been a prominent funder of the ME/CFS research studies. Several years ago, Ian Lipkin, who has promoted ME/CFS to Fauci, said Fauci understood ME/CFS was not a psychiatric disorder.

Still, Fauci has remained a leader apart. Until the coronavirus pandemic showed up there was little indication he had any interest in ME/CFS research. It’s also clear that he didn’t understand the opportunities ME/CFS research presented not just for the ME/CFS community but for others.

When Fauci was asked, “What keeps you up at night? What is your worst nightmare?”, he said he always replied that it was “a brand new (respiratory-borne) virus”. Feeling that one was coming, Fauci warned the Trump administration in 2017 that we were due for the emergence of a new and dangerous virus, and were ill-prepared for it.

Fauci missed a logical conclusion of a pandemic – long haulers.

Yet both Fauci and the NIAID were clearly not prepared for a logical outcome of a pandemic – the long haulers. As Fauci lay awake at night ruminating over the devastation a pandemic could wreak on an unprepared nation, he seems to have entirely missed the possibility that a pandemic could leave millions of debilitated people in its wake.

As the first SARS coronavirus, MERS, West Nile Fever, and the Ebola virus left debilitated people in their wakes Fauci apparently paid little attention. As studies revealed that Epstein-Barr virus, Giardia, Coxsackie, HIV etc. could trigger mysterious long-term illnesses in a significant number of people, Fauci was asleep at the switch. The poster child for post-infectious illnesses (ME/CFS) was clearly off his radar.

That was unfortunate. Fauci had all the resources he needed to tackle that problem: a $5 billion/year immune institute, and a post-infectious disease (ME/CFS) that advocates had been begging him to study for years.

Throughout the pandemic, it’s been mostly been the same. Even as dozens of COVID long-hauler stories circulated, Fauci didn’t mention it or ME/CFS until an ME Action advocate specifically asked him about the connection. Finally, in July 2020,  Fauci said that “some patients may have “post-infection syndromes” that resemble chronic fatigue syndrome.

“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.”

That was quite helpful. When Fauci speaks, the media listens, and dozens of media outlets picked up on that. They’re still referring to that statement today.

Since then, though, Fauci has rarely spoken of long COVID (or ME/CFS).  It’s odd that the great promoter of social distancing in the U. S. has never, that I can tell, used his bully pulpit to warn young people – the transmitters of so much COVID – that they were in danger of coming down with a long-term illness.

Just yesterday Fauci missed an epic opportunity to do that when Joe Rogen, a podcaster with an audience of millions, had opined that young people don’t need to get vaccinated because they would fight it off and be fine. According to news reports Fauci rebutted Rogen with the same trope he’s been using for the past year: that young people could pass the virus onto other people who could get really sick.

A recent study published in Nature found, though, that people with long COVID had a 59% increased risk of dying within six months. Another study found that six months after being infected, one in three people had experienced a psychiatric or neurological diagnosis. Fauci would likely have made more of an impact if he’d focused on that message.

Two months ago, in a short talk publicizing the NIH’s first efforts at long COVID, Fauci, whether intentionally or not, downplayed long COVID, stating that it can last “for months”. While Fauci stated that it could cause brain or heart disorders, he did not mention ME/CFS.

People can change, though, and Fauci has recently more publicly acknowledged the threat that long COVID poses as well as its link to its sister disease, ME/CFS.

Fauci’s statement that from 25-35% of coronavirus patients may come down with long COVID was helpful – and was used by advocates during the Solve ME/CFS Initiative’s Advocacy day this year. Fauci also 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.”

Recently, Medpage Today reported that Fauci explicitly linked ME/CFS and long COVID to some of the top neurologists in the world in a special session about COVID-19 at the annual meeting of the American Academy of Neurology (AAN). Fauci said:

“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.”

That was very promising. Walter Koroshetz, the Director of the National Institute of Neurological Diseases and Disorders (NINDS) then went further. First, he brought Francis Collins into the discussion, emphasizing that the director of the NIH himself wanted ME/CFS integrated into long-COVID research.

“Dr. Fauci and I’ve been asked by Dr. [Francis] Collins [NIH director] to really push on that…There are incredible parallels between the clusters of symptoms seen in those two conditions, and we’ve never been able to figure that one out.”

Citing the “very ambitious (long COVID) research” now underway, Koroshetz proposed that studying the long haulers could solve both diseases.

“Chronic fatigue syndrome is a real mystery but, in that case, you never knew what the virus was. A lot of people said they had a viral illness and then they had this trouble…(Now with COVID-19) we know when they had it, what it is, and we can actually try to trace the biology, and hopefully, get some clues that will help us understand and treat patients with post-acute COVID” and potentially, people with chronic fatigue syndrome.”

Koroshetz also clearly believes that NINDS, the big neurology institute at the NIH that he leads, will play a key role in that.

“Neurologists have to play a really important role in trying to get at the bottom of this problem, because it really is in many instances, a neurological problem,” along with dysautonomia, pain syndromes, abnormal sensations, and “big sleep troubles” that linger for months after COVID is first diagnosed.”

Having two NIH directors, including Fauci, as well as the head of the NIH himself link ME/CFS research to long COVID, is a good thing.

Still the devil is in the details. Four months after the NIH received over a billion dollars to study long COVID, much is unclear. A long-COVID grant opportunity focused on very large studies was released a couple of months ago with the news that more were coming. Two hundred and seventy-three applications were received –  seemingly a drop in the bucket when $1 billion dollars is concerned. (Awards will be announced over the next three weeks.) Since then nothing has been forthcoming and big questions remain.

Four months later, big questions remain about how the NIH will study the long haulers.

Is the NIH taking in the Long COVID Alliance’s suggestions into account? Will it call on long COVID researchers to expand on ME/CFS research insights into exercise, PEM, blood flows, metabolism, the autonomic nervous system, etc.?

Will it specifically call for studies that include both long COVID and ME/CFS patients? Will it, as Emily Taylor of Solve M.E. hopes, fund long-COVID/ME/CFS Centers of Excellence? Will ME/CFS researchers be able to get their grants funded, or will they have to continue to fight against the bias that’s historically pervaded these big research institutions?

Fauci and his NIH colleagues have a golden opportunity to make up a lot of neglect.

The long-COVID and ME/CFS communities have not been standing still. During Advocacy Week, a thousand or so advocates asked their representatives to support the $95 million COVID-19 Long Haulers Act to improve long-COVID and ME/CFS research, improve health care access for long-COVID patients, and educate doctors about long COVID and ME/CFS.

Alert! A Congressional hearing, “The Long Haul: Forging a Path through the Lingering Effects of COVID-19“, is underway at 11:00 am (EDT) this morning and will include Francis Collins, a CDC official and others. Watch the livestream of the hearing here.

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