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Game over for long COVID and ME/CFS research

Two public health officials assert that it’s game over for long COVID and ME/CFS: we will never understand these diseases and should stop trying.

Nothing speaks to the strangeness of the place long COVID and chronic fatigue syndrome (ME/CFS) inhabit in the medical sphere than two recent opinion pieces: Anthony Fauci – the man who cast the ME/CFS program out of the NIAID and into the wilderness at the NIH (where it remains today) – now completely gets it about the disease. He wants more research, not less.

The Defeatists…

“We believe a united America can win the fight against COVID-19.” The COVID “Collaborative”

 

“The current research directed at finding mechanistic clues to long Covid… is likely to produce further leads for more research, but with a low ultimate probability of success in helping patients. Focus should be on health services research and on … prevention, improved prognosis, access to empathetic care and quality of life issues.” Phillips and Williams – cofounders of the Collaborative Initiative

Two other newcomers to the scene – Steven Phillips, the Vice President of Science and Strategy, for the COVID Collaborative Initiative, and Michelle A. Williams Sc.D., the former Dean of the Harvard T.H. Chan School of Public Health and a co-founder of the COVID Collaborative, take a very different approach than people with ME/CFS, in particular, but perhaps any other disease, have seen before.

People with chronic fatigue syndrome, or ME/CFS, or long COVID, have seen their diseases belittled and not taken seriously. The chronic fatigue syndrome name itself, of course, has invited derision. The field battled through the “yuppie flu” tag and large, well-funded efforts to categorize it as a mental disorder. It’s never seen anything like this, though.

The authors don’t belittle these diseases at all – quite the opposite. In a 2021 opinion piece in the New England Journal of Medicine, they called long COVID “the next national health emergency“, acknowledged the resemblance to ME/CFS, fibromyalgia, and post-treatment Lyme disease syndrome, and stated:

“If the past is any guide, they (long COVID patients) will be disbelieved, marginalized, and shunned by many members of the medical community. Such a response will leave patients feeling misunderstood, aggrieved, and dissatisfied.”

More research, they felt, was imperative.

“Second, we need to continue to build out a formidable, well-funded domestic and international research agenda to identify causes, mechanisms, and ultimately means for prevention and treatment of long Covid.”

A mere two years later – a blip in the world of medical research – they’ve changed their tune. Bemoaning the fact that, 3 years after it appeared on the scene, people with long COVID aren’t really any better off, their response is to call it a day and give up.

In a series of articles, “How to End the Futile Blame Game Over Failed Long COVID Research“, and “Long Covid is a New Name for an Old Syndrome” in STAT News and Time, they advocate calling the search for the cause of these diseases off. The piece was subsequently picked up by Yahoo, MSN, World News and Bing News.

They adjure us – at least with regard to these two diseases – to give up our “blind faith” in the ability of medical research. The medical field, they conclude, is simply not up to the task. Better to admit defeat now, and use the funding to better employ what we know helps. That will serve the long-COVID and ME/CFS patients best, they say.

The Culprit – Chronic Fatigue Syndrome (ME/CFS)

Their prime exhibit for such a startling conclusion is none other than the (ME/CFS) research effort. “The established track record of ME/CFS research exploring cause and pathogenesis” has been not just unproductive, they say, but “singularly unproductive.”

Given that record, they assert that future research will be unproductive. “Either there is nothing to find, or currently available tools are insufficient to detect and validate mechanisms behind the myriad of symptoms.” In other words, both ME/CFS and long COVID are dry holes.

A Focus on Empathetic Care and Quality of Life Issues 

They propose putting research dollars to work on focusing on “comprehensive care, multi-disciplinary expertise, and professional empathy through well-described (but frequently inaccessible) symptom management and functional rehabilitation pathways”.

Hospice-care

Instead of moving forward with research the authors propose the medical system focus on providing “access to empathetic care and quality of life issues.”; i.e. something like hospice care.

The link to the “well-described symptom management, etc. pathways, leads to the Apple store (whoops), but we know what they are: drugs and behavioral management techniques that can reduce symptoms at times but rarely significantly move the needle on functionality – the great need in these diseases.

Indeed, the authors proposal that the medical establishment focus more on “empathetic” care and quality of life issues than research smacks more of a hospice care approach – a decades-long hospice care at that – than anything else.

Indeed, they have a pretty optimistic view of the efficacy of the current treatment regimens. The recent ME/CFS expert-aided Mayo Clinic Guidelines, “Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome“, are focused on “management”, not treatment. One wonders what the ME/CFS and long-COVID experts think of the idea that the current treatment options are good enough.

A Major ME/CFS Moment Just Occurred at…The Mayo Clinic!

The authors assert though, that focusing on the current treatments available is what the long-COVID patient community really wants or (should want). Writing off further attempts to understand these diseases will relieve the “controversy, finger-pointing, and patient disillusionment” that so burdens the long-term patient community. Embracing their path forward will produce a “less friction-filled forward path for research” that meets “the shared objectives of the research and patient communities.”

Needless to say, the idea that people with long COVID and ME/CFS, or any disease for that matter, would welcome cutting back on research seems more than a little out of touch. Long-COVID and ME/CFS patients are upset because they want more progress, not less. If you really want to agitate these groups – just try stopping efforts to understand them.

That, after all, has been tried. The authors might want to check out how it went when the UK focused its ME/CFS funding and treatments solely on cognitive behavioral and graded exercise therapy. That now abandoned effort left behind decades of resentment and anger, a remarkably combative patient population, and a lost generation or two of patients.

The Chokehold Behavioral Treatments Have on Chronic Fatigue Syndrome

 

Studies indicate that ME/CFS patients are significantly more functionally impaired than people with heart disease and multiple sclerosis. Nobody wants to have to live that kind of life – or anything close to it.

The Time article ends with the authors stating that:

“Long COVID research now reaching a mature stage, there is a realistic hope that patient and biomedical communities can collaboratively reset the national research agenda to mutual benefit under the umbrella of a new paradigm and sponsor”.

That sponsor would presumably be the organization Miller and Williams co-founded –  “The COVID Collaborative

Flawed Piece

All in all, the Time and STAT articles are so full of holes that one wonders why the editors of STAT, in particular, and TIME were willing to publish them.

The authors never attempt to explain why they believe that decades of pitiful research funding should be sufficient to explain a complex disease like ME/CFS, let alone any disease. The $13 million/year that ME/CFS is now getting from the NIH, or the $6 million/year it was recently getting, puts it at the very bottom of disease funding. Relative to its disease burden, it’s actually the most underfunded disease going.

Study Finds ME/CFS Most Neglected Disease Relative To Its Needs

Ravi Veriah Jacques Nov 15 on Twitter(X) said it well

“The great irony being that the lesson of ME is that if you profoundly underfund research into a condition, don’t be surprised if you never find out its underlying mechanism or develop effective treatments. It’s an astonishingly ignorant article.”

Projecting the future effectiveness of long COVID research efforts using a disease that gets several hundred times less funding a year is a mind-boggling stretch.

With biomarkers lacking and no mouse models available, the ME/CFS field has been virtually ignored by the pharmaceutical industry. Similarly, without clear criteria to identify the different long-COVID subsets, the long-COVID field, for its part, has essentially operated with one hand strapped behind its back. Still, significant progress has been made.

Despite the fact that the ME/CFS field has been underfunded and underpowered for years, it has actually proved an apt and prescient guide to long COVID. Herpes virus reactivation, endothelial cell dysfunction, microclots, impaired cerebral blood flows, autonomic nervous system problems, fatty acid metabolism, broken aerobic energy production, gas-exchange issueshypometabolism in the brain, brain stem issues, gut dysbiosis, endocrine issues, plasmalogen deficiency, and others all suggest that the issues uncovered first in ME/CFS – but never properly explored – are ripe for deeper examination.

Far from being unproductive with regards to treatment options, recent long-COVID and ME/CFS studies have opened up a panoply of options including Paxlovid, Metformin, guanfacine, rapamycin, oxaloacetate, Mestinon, anti-clotting and anti-platelet drugs. Instead of long-COVID research faltering, in its short life, it’s already proved a fertile field for experimentation.

Mature Research Field?

The idea that three years after long COVID burst on the scene, it or any other field could be considered “mature” is ludicrous.  Mature research fields contain “well-established bodies of knowledge, theory, and practice that are widely accepted”, have “a clear scope, definition, and identity”, a “rigorous and standardized system of education and training”, “strong and active professional organizations”, and have “significant and positive impacts on the health and well-being” of their patients.  The Long COVID field meets none of those criteria. One could add things like – is characterized by large, rigorously produced studies able to produce more or less definitive results.

A more reasonable interpretation would be that the field is in is gestational phase and it just getting started.

Science, after all, moves slowly – particularly when faced with quickly creating a new arena of endeavor. With precious few ME/CFS researchers available, and obviously, no long-COVID researchers to draw on, this large, complex field is, as a matter of course, only slowly starting to cohere.

At the first International Conference on Long COVID that recently took place, Dr. Steven Deeks noted how many of the speakers had never met each other before. Similarly, Dr. Gary Gibbons, the director of the Heart, Lung, and Blood Institute (NHLBI) at the NIH noted how many different institutes were working together on COVID that had never worked together before.

Finding the Keys to Long COVID? The Keystone Long COVID Conference Day I

Phillips and Williams may believe they have a crystal ball, but writing off the $1.15 billion RECOVER Initiative before it’s had a chance to show what it can do seems dicey. The  RECOVER Initiative’s publications have, until very recently, been focused almost entirely on electronic health records. With its most revealing work ahead of it, no one can predict what RECOVER will accomplish.

Besides, the idea that these diseases cannot or have not yielded to research efforts simply doesn’t wash. Even in its early muddled state, long COVID research has rapidly moved forward. Dr. Catherine Blish, an infectious disease specialist at Stanford University, stated:

In all honesty, we are so much further ahead at this relative point than for any other major disease in my lifetime as an infectious disease specialist“.

As Phillips and Williams urged researchers to give up the search for biomarkers, a recent Nature study found that a machine-learning model could distinguish long-COVID patients with 96% accuracy. This kind of result suggests these diseases can respond well to the kind of large, rigorously produced research studies that we’ve seen all too rarely in ME/CFS – and which the authors want to pull the plug on.

Ironically, just three weeks before Time published the author’s “give up on long COVID research article”, it published “Long COVID Research Is in Its ‘Most Hopeful’ Phase Yet“. In it, Christoph Thaiss asserted, “In the short history of studying this disease, this is probably the most hopeful moment we’ve ever had.

Steven Phillips, Michelle Williams and a Not-So-Collaborative “COVID Collaborative”

Michelle Williams

Michelle Williams is a former Dean at the Harvard School of Public Health

The authors are not lightweights. Michelle Williams is the former Dean of the Faculty at the Harvard T.H. Chan School of Public Health and was Chair of the Department of Epidemiology at Harvard.

Steven Phillips “has held leadership positions in global health and international development spanning private, government, academic and think-tank sectors over a three-decade career. He “serves on (6) global, national and community-service organization boards, holds two think-tank appointments, and is an independent consultant in global health strategy, policy, finance, and organizational effectiveness”.

While it’s filled with big names, the COVID Collaborative they formed is decidedly lightweight in its field of choice. Instead of a scientific advisory board, it sports a National Advisory Council which contains few COVID experts and may not contain any long COVID experts.

Steven Phillips

Steven Phillips has held leadership positions in global health and international development.

An examination of about half its 125 or so members found it to be heavy on leaders from the health industry including Mark Del Monte (CEO/Executive Vice President of the American Academy of Pediatrics (AAP)), Jocelyn Elders (former Surgeon General of the U.S.), Tom Frieden (former CDC director), Kathleen Sibelius (former Dept of Health Secretary and Kansas Governor), Bill Frist (former U.S. Senate Majority leader).

Business leaders abound as well. Suzanne Clark (Pres. Of the Chamber of Commerce), Jo Ann Jenkins (CEO of AARP), and Howard Schultz (Starbucks founder) make up a short list of business leaders. Nonprofits are well represented as well. The list also includes religious leaders (Rick Warren, Ted Wiard), and leaders in education Michael Crow (Pres. Arizona State University), Arne Duncan (former US Secretary of Education), politicians (Mitch Daniels (former Indiana governor), Chris Christie (former Governor of New Jersey), Michael Leavitt (former Gov of Utah), Civil Rights leaders (Janet Murguia – La Raza) military leaders Stanley McChrystal, etc. It just goes on and on and on.

THE GIST

  • The Great Divide series charts two opposing viewpoints. In one, former NIAID director, and long-time ME/CFS nemesis, Anthony Fauci proposes more funding for long COVID and ME/CFS research. In the second, two public health officials – Steven Phillips and Michelle Williams assert that we should stop trying to figure out these diseases and instead plow funding into what we now know to help patients.
  • Phillips and Williams acknowledge the seriousness of these diseases. They’ve called long COVID “the next national health emergency“, and stated that “If the past is any guide, they (long COVID patients) will be disbelieved, marginalized, and shunned by many members of the medical community.”
  • Instead of arguing for more, better research, though, they advocate for calling the search for the cause of these diseases off. The medical field is simply not up to the task. Citing the “singularly unproductive” field of ME/CFS research, they state either there is “nothing to find” or the medical field is incapable of finding what is. With Long COVID research reaching a “mature stage”, it’s time to call off the search.
  • Suggesting something akin to a very long-term hospice-like approach, the authors propose that the medical establishment focus more on “comprehensive care”, “empathetic” care, and quality-of-life issues.
  • The piece is fatally flawed. The authors never explain why they believe decades of pitiful research funding should be sufficient to explain a complex disease like ME/CFS. Relative to its disease burden, ME/CFS is the most underfunded disease going. Indeed, projecting the future effectiveness of long COVID research efforts using a disease that gets several hundred times less funding a year constitutes a mind-boggling stretch.
  • Despite the fact that the ME/CFS field has been underfunded and underpowered for years, it has actually proved an apt and prescient guide to long COVID through its ability to highlight many issues including herpesvirus reactivation, microclots, impaired cerebral blood flows, autonomic nervous system problems, fatty acid metabolism, broken aerobic energy production, gut dysbiosis, endocrine issues, etc. All these issues were uncovered first in ME/CFS – but were never properly explored – and are ripe for deeper examination.
  • Similarly, far from being unproductive with regards to treatment options, recent long-COVID and ME/CFS studies have opened up a panoply of options including Paxlovid, Metformin, guanfacine, rapamycin, oxaloacetate, Mestinon, anti-clotting and anti-platelet drugs.
  • Writing off the $1.15 billion RECOVER Initiative before it’s had a chance to show what it can do seems dicey in the extreme.
  • Their assertion that a new 3-year-old medical field could possibly be considered “mature” or that the field is not making suitable progress simply seems ludicrous. Dr. Catherine Blish, an infectious disease specialist at Stanford University, recently stated “In all honesty, we are so much further ahead at this relative point than for any other major disease in my lifetime as an infectious disease specialist“.
  • While it’s filled with big names, the COVID Collaborative they formed is decidedly lightweight in its field of choice. Instead of a scientific advisory board, it sports a National Advisory Council which contains leaders in the health field, business, and government but few COVID experts and does not appear to contain any long COVID experts. Despite the plethora of large long COVID organizations that have been created, none are listed as collaborators.
  • Phillips and William’s defeatist attitude is at odds with the American can-do ethos. Their lack of faith in the ever-growing ability of medical technology to explain diseases is shocking. Given their reasoning, the decades-long War on Cancer – which took over a decade to bear real fruit – would have been canceled years ago.
  • One has to ask what is it about diseases like ME/CFS, fibromyalgia, long COVID, postural orthostatic tachycardia syndrome, irritable bowel syndrome, etc., that seems to leave them perennially open to such bizarre viewpoints. Who, after all, advocates giving up on a major disease?
  • The tie that binds these diseases together is that these are very complex, fatigue and pain-producing, functionally-impaired diseases that often disable but rarely kill, are mostly invisible, and mostly afflict women. Something about those characteristics makes it okay for people like Phillips and Williams to treat them differently.
  • One wonders if any public figures have ever given up on a disease so quickly.
  • Next up – “A Leopard Changes its Spots. ME/CFS’s arch-enemy Anthony Fauci calls for more research into it and long COVID.

Oddly enough, it’s decidedly short in COVID-19 or long-COVID experts, though. Of the first 60 or so members I looked at, only Bechara Choucair (COVID vaccinations – Kaiser), Marla Dalton (Chief Staff Officer of the National Foundation of Infectious Diseases), and Charity Dean (MD) appeared to have any real-world experience with COVID-19.

Despite its name, the COVID “Collaborative” also doesn’t appear to be interested in collaborating with COVID or long-COVID organizations. Despite the plethora of long-COVID organizations that have cropped up, I could find only two small COVID organizations (Marked By COVID, 19 COVID Local – no website found) that are collaborating with it… (Walmart is, though.)

While with its many high-profile public figures, the COVID Collaborative probably swings a pretty big stick in the public realm, but it’s also clearly a lightweight in the COVID field itself. While it deigns to speak for the long-COVID research field, doctors, and patients, it’s not collaborating with researchers, doctors, patient organizations, or patients.

One wonders what the members of its advisory board think of Miller’s and William’s proposal to so quickly give up the ghost on long COVID research. Its National Advisory Board is full of prime movers and leaders who have, against all odds, produced results in difficult fields. Do they also endorse giving up the fight for long COVID and diseases like ME/CFS, fibromyalgia, post-treatment Lyme disease, and others?

Does Charity Dean, for instance, the hero of Michael Lewis‘s acclaimed book, “The Premonition: A Pandemic Story“, which charts the “woefully inadequate” government response to the pandemic, believe the federal government should stop trying to uncover the cause of long COVID?

What about  Dr. Ezekial Emmanuel, who in a 2022 Washington Post piece, stated that he “desperately fear(ed) living a debilitated life of mental muddle or torpor” and warned against dismissing long COVID? Does he too believe we should dismiss long COVID as a legitimated research entity?

Similarly, is Gabrielle Fitzgerald, the founder and CEO of Panorama, an action tank dedicated to achieving ambitious goals and solving the world’s toughest problems, OK on giving up so quickly on long COVID and associated diseases?

Does Martin Edmund, the CEO of “Malaria No More – an organization dedicated to ending malaria – a tough nut if there ever was one, embrace the “Long COVID Forever More” thesis? How about Suzanne Clark – Pres. Of Chamber of Commerce? Does the leader of the Chamber of Commerce really endorse essentially writing off the working lives of millions of Americans? How about Kaiser? Is it in Kaiser’s best interest to keep the status quo with regard to long COVID and ME/CFS?

Defeatist Attitude

One would hope not. Indeed, Phillips and William’s defeatist attitude is at odds with the American can-do ethos. Their lack of faith in the ever-growing ability of medical technology and artificial intelligence to explain diseases is shocking. Given their reasoning, the decades-long War on Cancer – which took over a decade to bear real fruit – would have been canceled years ago. So, too, the effort to combat HIV/AIDS. It took years, after all, of intense effort to come up with a suitable biomarker for HIV/AIDS. Once it was found, though, the drugs came quickly.

Phillips and Williams are unwilling the give long COVID and ME/CFS sufferers – and by implication anyone suffering from diseases like fibromyalgia (FM), or post-treatment Lyme disease syndrome (PTLDS) – the same chance. One has to ask why the authors felt a strange conclusion would be embraced, let alone tolerated. Asserting that we give up the fight for other diseases would be condemned in other diseases yet the authors clearly feel the medical research establishment might accept it.

One has to ask what is it about diseases like ME/CFS, fibromyalgia, long COVID, postural orthostatic tachycardia syndrome, irritable bowel syndrome, etc., that seems to leave them perennially open to such bizarre viewpoints. Who, after all, advocates giving up on a major disease?

The tie that binds these diseases together is that these are very complex, fatigue and pain-producing, functionally-impaired diseases that often disable but rarely kill, are mostly invisible, and mostly afflict women. Something about that set of characteristics makes it okay for people like Phillips and Williams to treat them differently.

Despite their agreement that long COVID and ME/CFS are functionally disabling diseases, indeed even “national health emergencies”, Miller and Williams believe they’re not worth the struggle and the effort.

One wonders if any public figures have ever given up on a disease so quickly.

  • Next up, in Pt. II of The Great Divide: a very public figure with decades of experience with ME/CFS changes his tune in “The Leopard Who Changed His Spots: Anthony Fauci on ME/CFS and Long COVID.

 

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