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”.
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.
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.
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.
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 issues, hypometabolism 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.
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 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 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.
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.
Thanks for writing this Cort. No doubt it made your blood boil as much as it does the rest of us, but I so admire your ability to write so eloquently regardless! Thanks for putting into words what we all think and feel on this topic.
Thanks – I have never seen anything like this – giving up on an entire field! It’s so bizarre – they lay out how terrible things are – and then recommend giving up! Who does that?
Someone with ulterior motives. A cynical person might say a bunch of clinicians bitter that they couldn’t get their snout in trough of the research money, so why not try to white-ant the research and create a new industry based on perpetually cultivating a chronic disease.
Alternatively, reading:
“However this is a false dichotomy. Scientific evidence shows that post-infectious fatigue syndromes (including long Covid) can have a spectrum of inseparable pathobiological and psychological components. Acknowledging this is culturally unifying and will generate more light than heat in helping chart society’s path forward.”
might mean the psychologist stooges are back in town.
How hypocritical is it to read “However this is a false dichotomy.” in an article making the case for reducing research to fund patient care:
“It prioritizes care delivery over research in the expenditure of government funds.”
Is anyone, of consequence, falling for this? I suspect there is going to be a lot of grief from the new enemies they will have created in the medical research community. And that isn’t just the ME/CFS research community but also all those alleged NIH long Covid band-wagon-jumpers.
Keep one thing in mind – you wouldn’t want to be one of these folks when a research break through occurs. Risking looking like a total fool due to a career limiting own goal that raises serious questions about your professional integrity is an interesting strategy.
“functionally-impaired diseases that often disable but rarely kill”
I think you hit the nail on the head of the lack of continuing interest and funding. If covid-19 hadn’t killed people, no one would have gave a crap about it either.
We don’t die, we just suffer. The world doesn’t care much about suffering. Death makes headlines. Suffering is hard to look at people turn away.
This must have been a very frustrating piece to write – thank you.
Well, it REALLY got me going. The nice side of all this, though, is the NEXT piece – on Fauci’s really remarkable turnaround. Honestly, if I had to choose who’s got more clout, I’ll take the opinion former head of NIAID over these guys any day of the week. I hope I’m right!
I wonder of Fauci was constrained by regulatory capture in his entire career, and only now in retirement is allowed to question a special interest imposed party line he had to toe at NIAID.
The only thing I can think is there is some reason for them to put forth this idea and attitude, that they can stand to make money from it somehow through their COVID Collaborative. Seems like a big group of republican-thinking, science-eschewing corporate greed and religious bigot types, though I can’t explain how someone with Michelle Williams science degrees and background could hold this belief. But it makes no sense.
I had the same thought. Although it’s hard to follow the money on this one. And I think Cort is also right that long covid is a kind of disease that emboldens people to ignore it.
I just don’t understand. Take the fact that they called the field “mature” just three years after it popped up. I’m scratching my head wondering who would say such a thing. So far as I can tell, it’s had just two scientific conferences thus far. Many of the people in the field still don’t know each other. The NIH doesn’t even have a funding mechanism for long COVID. Like ME/CFS the NIH doesn’t know what to do with it; i.e. it hasn’t been assigned to any specialty or Institute. Despite the fact that long COVID is almost certainly riddled with subsets it lacks criteria for diagnosis and there’s no way to ferret out those subsets; in other words – this field is the opposite of “mature”.
How can you accurately study something you don’t have a set criteria for? Everybody could be studying different groups of people.
I asked the BING AI what constitutes a “mature medical field”.
It said the possible factors are:
Some examples of mature medical fields are cardiology, neurology, oncology, psychiatry, and surgery. These fields have evolved over many years and have achieved a high degree of excellence and recognition in their respective domains.
Forget about the silly “big pharma is hiding a cure for cancer” conspiracy, why is nobody but us worried about the “if it affects mostly girls and/or isn’t usually deadly, medicine doesn’t care” mess? This is completely ridiculous and they’re about to eat their words in 5 years when american social security is bankrupt from all the long covid cases unable to work
It seems to me that many people in the long COVID field still haven’t caught onto the fact that many of the long-term symptoms are autonomic. They certainly don’t mention it.
Meanwhile, dysautonomia specialists have been plugging away, trying to help long COVID patients and stretching their already thin budgets to do research on long COVID.
I forget what my point is … I think it’s that a mature field would know that a lot of its research subjects have dysautonomia and take advantage of the knowledge there.
Agreed! For the long COVID field to become mature, it needs a mature dysautonomia field. Despite the ubiquitousness of the autonomic nervous system dysautonomia is a surprisingly small field that has not gotten much research funding. Hopefully that will change.
As always, an insightful and informative post. Thank you.
All I can hope for is that these folks get this illness for say, one month or two–at a severe level, and then let them talk. Disgraceful. Remember when MS was viewed as hysteria. And ulcers was viewed as stress.
Nah they deserve severe cfs for the rest of their lives, see how they like being given up on. Unfortunately we’re 100 years behind the times in medicine, still living in the dark ages of everything being unbalanced humours or nonsense like that… The only consolation is that at some point cfs will end up on the list in medical ethics textbooks along with the tuskegee experiments as examples of major screwups in medicine
Try herbalism
Thank you, Cort. This is crushing and unfathomable. Thank you furthermore for listing their names to help the millions of people suffering grievously for most likely the rest of their lives to know who to blame and hold responsible. I’d love to see them stand at a podium and present this to the actual people they’re making decisions for consequentially being creators of pain and suffering. This is what they stand for. This is what they got from all the education received at some prestigious universities? Shame on them. You’re a hero, Cort.
Thanks, Shea – I’m hoping that word of these articles leaks down to some of their collaborators. I can’t imagine they agree with giving up on diseases.
This is another example of business taking over healthcare in the US. The richest country in the world now has the 24th ranked healthcare system. Who pray tell is going to provide the proposed care for all the long Covid/ME/CFS sufferers they’re talking about? The system is currently so broken, understaffed, just try to get an appointment if you don’t live in a major metropolitan city! As you point out, these are not actual experts, but bureaucrats, probably with no actual first hand experience with actual patients.
Notice that they said Long Covid is not “caused” by the virus, but rather “triggered” by it. They specifically make that distinction. If you read through it carefully, they’re not giving up on figuring it out – they’re saying it’s psychosomatic or a “functional” disorder. They’re basically saying that we all need to go see a psychiatrist. One of the links is to a single (outdated) study in England that found people who developed ME/CFS were more likely to have previously been diagnosed with anxiety or depression. They say Long Covid is clearly the same as ME/CFS, and then say that similar conditions have been described for centuries. The corresponding link is to “Old wine in new bottles: Neurasthenia and ME.” While the term is no longer used, it was considered a Somatoform Disorder – and guess what the recommended treatment was? You guessed it -CBT and graded exercise therapy! You can read about it here: https://www.sciencedirect.com/topics/medicine-and-dentistry/neurasthenia
One wonders if that’s what underlies this.
Yes, what Susan writes makes the most sense to me. After all, the Western medical establishment has misunderstood ME/CFS probably since the 19th century and psychiatrised the phenomenon. Doctors are not good at seeing clearly when they make mistakes. To me it sometimes even seems that in order to become a doctor you have to be able to develop the trait of being able to notoriously lie when you make mistakes. Therefore I wouldn’t speculate too much on sophisticated theorys about how they are all consciously and intentionally doing so much harm to patients because they make money from it.
The problem is rather that the medical establishment has a very powerful position in the modern bourgeois nation state. Thus they have the power to define what’s true about their patients and there are no real checks and balances. It is rather like the fight of David against Goliath. The state funded medical system on the one hand and patient advocacy groups on the other.
People with ME/CFS are not the only one that are not taken care of properly or even harmed by doctors. The same is going on in the field of psychiatry. There we also have constantly rising numbers of chronicity and disability despite always more medical attention and money that goes into the field. If you haven’t heard of it you’re invited to read some of the coverage on psychiatry over at Mad in America.
As a historian the situation is not coming as a surprise to me. Two hundred years after the first university were founded in the 12th century the way that knowledge was produced and tought had become empty rituals. And this went on for the next 500 years. This is just what’s going on here too.
My belief is that if an unethical special interest wants to make a particular disease which cannot be objectively proven, and which medicine simply doesn’t understand, “go away” badly enough, they spend about US$10 million to set up a fake institute which makes grants to psychologists / psychiatrists and gets a bunch of papers published in the peer reviewed medical literature saying the syndrome is psych. For a bit more they PR the hell out of this message to physicians, and for a bit more than that lobby the (US) state level medical licensing boards.
This was done for MCS in the 1990s by ESRI, then NCAHF
It was done circa 2010 in the PACE program, funded almost entirely by disability payers. Think about it. For a US$10M investment they were able to shirk on the order of a trillion dollars in lifetime disability income, and it’s all fact since it’s in the peer reviewed medical literature. (Go back and think about the basic design of PACE given the hypothesis it was designed from the beginning to provide disability payers cover to deny all claims for ME/”CFS”.)
It didn’t need to be done for GWS, the docs were simply given orders to diagnose as “malingering”.
I bet you can think of 5 other conditions medicine really doesn’t understand for which this has been done in the last 30 years. (I can’t document any more, but did encounter evidence that an industry committee was being used to whitewash EHS back 25ish years ago.)
I agree Steve. It is all about the money. The other big player is insurance. They are scared to death that this will become another HIV/AIDS, with fantastically expensive drug cocktails that they will be forced to cover. Much better to just make it a psychosomatic illness which is not covered.
It’s already another HIV/AIDS. People are suffering to an extreme and nobody cares. Now how do we skip ahead to the part where we make everyone mad at the government about it?
It’s not another HIV/AIDS. The insurance companies are forced to cover their drugs 100%.They spend billions on their treatment.
The insurance companies will do anything to make sure that CFS/ME is seen as a psychosomatic disease that isn’t covered.
I mean this part, the bit where a bunch of people suffer without a treatment and people aren’t spending money looking for one
It’s ludicrous! The first thing that comes to mind is the common, “someone needs to do something about this “… problem is we’re all too sick to advocate for ourselves and many can’t even read! How did these individuals get put in these positions? Time for someone healthy enough to call them out using every media outlet that exists.
I volunteer for this job. I have pretty bad symptoms that are disabling. But I think I could muster the energy from sheer anger alone, after having dealt with this load of crap for more than 25 years.
Thank you for volunteering as tribute! And I’m very sorry you’ve had to suffer for 25 years.
Are we sure they don’t have long covid fogging their brains? Senseless. This is as ludicrous as me saying to all of them, we don’t understand the future illness you’re going to eventually die from so based on our credibility in the field of nothing related to what you will have we’re going to cut the funding for the hospice you desperately need when you’re suffering the absolute most. Obviously that’s the opposite case but is a good example of the level of stupidity we’re dealing with. I would love to ask them all the meaning of money during the days they’re lying on their death beds.
Senseless, indeed. One can’t help but hope they get a taste of their own inadequate medicine some day.
SHOCKINGLY STUPID!!!! Are these people trying to shift funding to their own preferred projects? I object, given my 41 year period of suffering with FMS, CFIDS & ME. Such a gift from these medical people to have our lives dismissed…our lives, our endurance, our hope that they would some day open their eyes…being laughed at by doctors, being shamed for years and years, and having to pay them for it. TRY HARDER, we have all had to as patients.
Yes. THIS.
If there is any chance that finding the cause of ME/CFS/Fibro/Long Covid would lead to a cure – and perhaps the cure to other chronic disease(s) – then there would be no financial incentive for the Medical Industrial Complex (those who profit from chronic illness) to find its cause. Rather, the incentive would be to suppress the cause (and/or research to find it), so a lifetime of more profitable temporary symptom suppressors can be sold.
In another scenario, if there is any significantly profitable synthetic chemical (or combination of synthetic chemicals) that is implicated in cause(s) of ME/CFS/Fibro/Long Covid, then we could only expect this connection to be suppressed, which may include suppressing a search for the cause(s) and contributing factors.
At a lower level, if Physicians are (effectively) paid a commission per patient visit, they are incentivized to push thru the maximum number of patients per hour to maximize their income. Thus, they don’t want to hear about 30 obscure symptoms – that all beg for more time and investigation (and learning to understand). They want to hear one (or very few) symptoms – that indicate a problem that they are already familiar with, so they can quickly look up and offer the already approved temporary symptom suppressors from their medical manual/recipe book. “Next patient please!”. This is how to monetize assembly line medicine. Note that this is the fault of the system, not the individual doctors who must work within it.
There are many systemic mechanisms at multiple different levels within science and medicine that can act to suppress the search for core causes and real solutions. IMO, the commonality is that when profit or self-interest is in conflict with science (in our current culture), profit usually takes precedence. When profiteers (eventually) hijack the entire research and medical system, nothing that threatens a cash cow will get adequate funding. Just my take.
Thx Cort, and well written!
Great post Dave and I agree that all of this is due to the medical/tech industrial complex which is part of the global “managerial state”. The thing with the medical/tech industry is that they create what will bring in the most money—which currently is being funneled into “behavioral health”. Billions are being allocated toward all the maladies they can list under this category (opioid and other substances disorders, life stressors and crises, aging, and stress-related physical symptoms, etc.) And of course the tech companies are all over it —with finding addressing behavioral health via telehealth a better bang for their margins.
So, ME has never left this psycho babble place even after all the latest research. And yes, I agree, incentivizing is the evil that comes from managed “care” via capitated payment systems, where providers are paid upfront money per month per patient. Value based “care” is one such scheme where capitated payments facilitate cherry picking and lemon dropping so they can meet their “quality metrics.”
And this article came out recently, i’ve seen it quoted a couple times already.
So its an industry-heavy consort too light on actual experienced people, let alone experts. And new CBT claims coming out. I think I see what’s going on here…
Or maybe they actually do know what causes these diseases and just dont want it to come out? Easier to let patients take the blame for being ‘weak’ and just tell us to get over it.
https://medicalxpress.com/news/2023-11-cognitive-behavioral-therapy-beneficial-patients.html
It’s funny ,ya know.
Just the other day I called to get an appointment to see my Dr. Who claims to be a “specialist” in me/cfs.
Upon calling his office, the front desk clerk tells me “he’s booking into late november”.I was shocked as usually I can get in quicker, like a month or so.
Something inside me ,after hanging up my phone,said to myself, “wait just a minute”,and I thought….”hmmm” funny, there’s never anybody sitting in the waiting room ahead of me, or, after me when I leave his room”
So, I decided to ,one day, because I don’t have a job, sit in my car and watch that clinic to see just how many patients this guy sees.
Well, guess what…from 9 am to 12noon, AND 1PM TO 5PM,not one person entered his clinic. ” booking into Nov. From 2 1/2 months..
YEAH RIGHT
I’ve had this illness since ’93.prior to my blow up in 93 I went to many, many, many, many, many doctor visits and I was told many, many, many many different things and sent to many ,many many, many specialists only to be told absolutely a bunch of hogwash.
Now, if we look at these medical systems, they are set up like money making machines….plain and very simple to see if we look at how the system is run by higher ups.
I believe a cure for cancer could have, should have been found long ago.
Our next red flag should be the rate of people being vaccine injured and long haul covid and how non of this makes the news or how many people have died of these diseases, never makes the news.
People, WE ARE BEING DUPPED!!
a lot of Dr’s. Made a lot of money from my litterally hundreds of visits, I got a big fat ZERO in return…in fact, in hindsight I got lied to.Cort, it’s time to change your web name from health rising to something more……forward ,shall we say
We can’t make a hubbub about vaccine injuries because it’s a small percent of people and any tiny smidgen of ammo you give to the antivaxxers just screws us all over, especially since our immune systems ain’t doing so great. (Besides, it’s likely that if a vaccine triggers it, the virus would get you as well so the issue is less vaccines and more not understanding immune systems fully)
I appreciate your brilliant post, Cort.
I saw the Time article two days ago and have been sick over it since. I hope its thesis doesn’t metastasize to other media.
I am reminded of that study regarding the economic impact posed by LC, as reported by Harvard’s David Cutler last year. 3.7 trillion dollars. I remember him saying in the WSJ that the government simply can’t spend too much money trying to solve this problem. It’s that big.
These Harvard folks need to talk to each other!
The Time article is the most pernicious, cynical attack against our community I’ve seen in years.
Horrible. My conclusion is that our medical leadership is insane. And/or corrupt.
(Though I don’t see how anyone gains financially from suppressing research and treatment for these disorders. Anyone opening a clinic for me/cfs, long covid, etc would be flooded with clients. Pharmaceutical companies could sell treatments like hotcakes. Seems like they’re denying a huge market, and revenue source.)
So maybe I’ll just go with insane.
:). I wonder how many people agree with them. Some people must otherwise they would have never dared pen such a troubling piece I wouldn’t think. Thankfully, the antidote to this blog is coming up soon.
I don’t agree with them, but I think there is something in medical science not being up to these illnesses, and giving ghese people the platform. And I have long thought that the answer to ME/CFS lies in the brain. Not a psychosomatic illness, but structural and biochemical issues in the brain and CNS. The brain is obviously very complex, and hence the struggle for scientists to get to grips with it and ME/CFS.
But to jump to where they jump to in terms of next steps, no way!
What I would say is that we have been let down over decades by many researchers. Far too much time has been wasted on fruitless viral and immunological searches, up to quite recently. The fact that study after study has come up with very little has given credence to the notion that the illness is psychosomatic. Yes ME/CFS is all in the brain! But biochemical not psychological!
At least now we are starting to see more on the brain, with the excellent German study earlier this year. And perhaps Younger might come up with something meaningful?
Thank you Cort for being a caring voice of reason and logic.
I’ve read your blog for a few years now since my partner became ill and housebound with ME.
This article filled me with dread and sadness, but I still have faith and hope that more are on the side of good than ignorance, greed or alterior motives, for what feels like political spin.
So from over here in Scotland I send you our thanks for all that you do.
Jo
Thanks, Jo
I wonder if this is just the kind of pushback one would expect as more resources are put into efforts explaining the physiological nature of diseases like ME/CFS, long COVID…
I assume they are sincere but the fact that they go to great lengths to acknowledge how difficult these diseases are position themselves as concerned supporters and then turn around say give up on the research is singularly appalling.
To me its like giving food laced with poison to someone who’s starving…It likes great until you eat it.
I agree it is in the brain. No abnormalities have ever been found in ME/CFS. All blood tests are normal. I just had a week of tremor and jerking awake at night. It then suddenly disappeared! Work that one out if you can. It is the brain playing tricks. That’s what ME/CFS is.
I’m SURE the brain is heavily involved. Like to point out though that while routine blood tests are rarely abnormal researchers do regularly find abnormalities using tests that are available only to researchers.
I predict when AGI arrives (hopefully very soon) it’ll just take it a year or two to solve ME/CFS and most other diseases.
Excellent study, research, and analysis, best I’ve seen. Thank you.
I believe the talking point “NIH has spent US$5 billion looking for a physical cause for Long Covid, and failed, so there isn’t one, and we should stop trying” which turned up around a year ago is a talking point from some payer of disability income, terrified that an objective test (a biomarker) for Long Covid will be found.
My back of the envelope suggests the lifetime disability income exposure, just in Europe and the western hemisphere, is in the neighborhood of US$5 trillion, which is the GDP of a mid size country. Even the national payers can’t find this kind of money. They must be in an utter panic.
Which is a long winded way of me saying I think the defeatist message is special interest led disinformation, benefitting some payer of disability income. I do not accuse the authors of knowing it’s disinformation, just think they were persuaded to that viewpoint by people who know exactly what they’re doing.
My letter to Time in response, which has no chance of being published, is linked on Twitter @fstevenchalmers and posted on Medium, again @fstevenchalmers
Thank you again for a thorough analysis, and for a great deal of background information I did not know. Well done.
BINGO!!! Disability payers panicking. Seems they’d want to find answers in order to get us back to health and reduce their exposure; but then again maybe those answers would validate the disabling nature of these diseases and increase their exposure while we all wait for working treatments (I dont believe ‘cures’ are profitable in the long run, so they wont likely be found).
The numbers are so big, that if a biomarker is found and accepted by mainstream medicine, the private insurers will all be bankrupted that day, and the national programs will have to ask for staggering amounts of money which politically can’t be found.
Yes, a cure (a real cure) is the only way out of this mess for society.
But the payers of disability income can’t see that far into the future, they are cornered animals knowing that if either ME/”CFS” or LC is objectively provable, they’re out of business.
Hence the disinformation campaigns denying / trivializing both.
I don’t need better ‘care’ – I’ve received none in 34 years, and can keep myself going in my tiny world just fine. Ludicrous, but fine.
What I want is CAUSE (mechanism), effective TREATMENT, and CURE – hoping it applies to those of us who have been sick for decades (with no help), but ESPECIALLY for the new ME/CFS etc. people AND the new long covid people – so even if I can’t be helped any more, the world will stop producing MORE sick people.
That and acknowledgment and THEN maybe ‘help’ (an assistant I pay for myself is a huge help), along with belief and acceptance from the medical and governmental organizations that have done SO much to make coming down with this disease and similar ones horrible for the patients.
Surely we can do research AND help those who are permanently ill at the same time?
Thanks for diving into what an absurdly bad idea that is. I am an undergrad hoping to go into researching post-viral syndromes because I am fascinated by the topic and the more I read about it the more I realize there is to be discovered. I also believe that discoveries about ME/CFS and long Covid *could* have implications in diseases such as MS, which we know has a viral link, and Alzheimer’s and Parkinson’s, which have been suggested to have a viral link. There’s only one way to find out. The idea of writing off the entire field shows a chilling lack of intellectual curiosity, which has to be the most important trait for a scientist to have.
Yes, not to mention fibromyalgia, post Treatment Lyme disease, irritable bowel syndrome, migraine and on. Systrom recently found evidence of post-exertional malaise and connective tissue problems in rheumatoid arthritis. A similar fatigue network in the brain is believed to be present in multiple sclerosis. Let’s not forget the EBV connections in MS, ME/CFS and long COVID, the basal ganglia connection with Parkinson’s – it just goes on and on.
Would you mind linking the Systrom study showing PEM in RA? I have a family history of RA/lupus as well as benign joint hypermobility (connective tissue) and we are very physically active but I would like to be aware of anything suggesting we might develop something ME/CFS-like. Thank you for sharing all this scientific information. It’s fascinating and seems to all be parts of a massive puzzle that I would love to be part of solving.
Yes, it is a massive puzzle. An effort to get a grant to assess genetic susceptibilities to ME/CFS, autoimmune, etc. diseases was just denied at the NIH. What a loss! My mother, by the way, died from the complications of Sjogren’s Syndrome.
We are going to have much more on this. Here’s a link to the blog – A Similar Kind of Exercise Intolerance is Found in Connective Tissue Diseases, ME/CFS and Long COVID – https://www.healthrising.org/blog/2021/12/19/exericise-intolerance-long-covid-chronic-fatigue-connective-tissue-diseases/
And there’s this blog as well.
https://www.healthrising.org/blog/2021/07/18/is-the-exercise-intolerance-in-rheumatoid-arthritis-and-me-cfs-similar/
To cover one’s rear is considered a slang term, meaning to make preparations or take precautions to ensure that a person is not blamed or punished for his or her conduct;
to take such action as one considers necessary to avoid censure, ridicule, etc at a later time.
As we’ve seen, giving up and repeatedly bandying terms like “poorly understood” misstates patterns which have already been recognised and buys decades of continued status quo.
It is naive to think that politics and misdeeds do not surround the world of research and medicine. Anyone affected reading this knows the extent of diagnostics which have not been undertaken. That which is not measured is not managed.
Thank you Cort for so eloquently and passionately advocating for us through this article. Also for bringing this to light so we can be more aware that there are people who are trying to push us backwards. We need to continue to advocate for ourselves and to fight and become angry and agitated against ignorant and selfish people. Is there anything further we can do such as riding emails or contacting these people or this organization directly? Just to let them know how angry we are?
”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.”
Do they fully understand cancer, MS, etc… do thet have a cure NO! It is not a reason to stop looking.
So why stop looking for a complex disease as ME/CFS? Do other interests play a role? Such as disability insurance. There must be something. This is not right.
Make a medical center for these patiënts with a group of good doctors. Take a group of 500 ME/CFS patiënts and find out what is going on. There is so much money make some (100 million a year ) available for ME/CFS and long covid.
If you don’t understand a disease try harder, do your best that is why you became a doctor or scientist isn’t ?
I have a complex reaction to this. Although some of us have found ways to manage our situation, most people have not and have no access to the knowledge on this site.
If these people are at least saying that money needs to be spent right now on getting the known testing and medical management that is in the Mayo document (which was generated by the 20 ME/CFS specialists in the country including Dr. Klimas) to all medical personel and to all patients, then I’m okay with that.
I live in Kansas which is a black hole for our current medical care. From the beginning of Covid I’ve been very concerned that the long covid patients would be driven by recommendations to exercise, into severe ME/CFS.
Cort did a survey a few years ago where he asked our group what was the most important thing they wished they had known at the outset and the answer 100% was to not exercise in a normal way. Whitney Defoe believes that by not knowing about energy limits and exercise that he drove himself from a moderate condition to a severe condition also.
Obviously, I am not in favor of them dropping research into ME/CFS but wish they would do as Fauci recommends instead.
I happen to have worked in a law office which handled the bankruptcy of an insurance company and Kathleen Sebelius was directing the whole thing. She is a Democrat not Republican and yet ended up elected Governor in a deep red state. The word was that she was a great administrator and struggled to reform the Kansas Insurance Commission practices…like actually using computers instead of handwritten ledgers….this in 1999!
It is why Obama grabbed her from us to implement better health care for the country. I’m going to try to print this article out and send it to her, in hope that she might stem the tide of ignorance on this Covid Collaborative Council.
Remember that cure is most probably a long way away, my husband’s cancer cure took 25 years to become reality from the time of the Nobel Prize winning idea of monoclonal antibodies and Rituxen evolved.
So yes we need a great deal of investment in serious research. If they support what is in the Mayo Clinic document, many more patients would be diagnosed properly and be eligible for long term disability….with tests like the 2 day CPET for support of the disability application.
Kathleen Sibelius’s name really stuck out for me and I’m glad you’re getting in contact with her. Would she really endorse giving up on a swath of diseases? I find that hard to believe from such an accomplished person.
Their idea of funneling more money into treatment and managment is a good one. Using funds that would have gone to research instead is not the way to do that, though.
This long COVID thing has been working out just about as well as I expected. Now we can wait for COVID29 to repeat the process all over again. Long COVID patients who insisted that theirs is not MECFS will get banished into MECFS hell and will have to likewise wait to repeat the process.
Had RECOVER shoveled at least some of the 1.14b money into finding cure for MECFS, we might have gotten somewhere. Instead, they treated long COVID as a new disease (PASC) and then shoveled money into studying it in “real time” from “clean slate”. All we got so far is bunch of statistics and nonsense theories that don’t even explain PEM. Williams and Phillips should’ve spoke up 3 years ago and steered more money into MECFS rather than the PASC blob. Had they done that, we might have gotten somewhere.
That said, the fact that the vaccine, Paxlovid and metformin drastically prevents long COVID was something tangible that came out of RECOVER. But, instead of figuring out why that is, they want to trial the antiviral, as if it hasn’t been tried yet, if it cures long COVID. They are just too many second-rate minds with blinders on.
A lot of people with these disorders live in the US where the insurance industry has a vice grip on coverage which people pay thousands of dollars each year for. There are very few drugs and therapies that insurance actually covers for these related conditions. If the government believes afflicted people will benefit from the above mentioned treatments, it should allow people with these conditions to have these treatments covered through their health insurance.
I caught the movie “The Martian” on TV last night. In part, it is about the global scientific community combining a huge amount of resources to figure out how to save one guy. It is a debatable choice, considering how many suffering people could have their suffering eased by those same resources.
Seems absent from the calculation is all of the invisible and incidental benefits from the scientists’ problem-solving. Some researcher somewhere thinks about a concept in a novel way, and going forward who knows how that new thinking might spread or be adapted and result in…who knows what?
But how should the suffering people feel while watching this? I wonder if we are supposed to pay some “units of suffering” for such scientific exploration.
I wouldn’t call P’s and W’s approach “defeatist.” In fact, it seems driven by prioritizing the reduction of “units of suffering” in a hard-hit patient population. That sounds compassionate to me.
Again, this seems like an ethical issue. Should p/w/ME/CFS and their caregivers be forced to incur “units of suffering” as a way of supporting research that may not produce dividends in their lifetimes? Does this population ever get a chance to “vote” on where resources should be devoted, or do others (government officials, researchers, etc.) just make the decision for us?
Thank you so much for this, Cort. It is eloquent and angry and perfect.
What do they say – there’s nothing that concentrates the mind like an impending execution or in this case a call to shut down long COVID, ME/CFS, (fibromyalgia as well), etc. research.
The authors of the Time article tipped their hand with this sentence.
“Why is this research unlikely to be productive? Because either there is nothing to find, or currently available tools are insufficient to detect and validate mechanisms behind the myriad of symptoms.”
There’s plenty to find, sometimes I wonder if their fear is productive research.
Study the microbiome already.
That Phillips has spooky eyes
Thank you Cort for once again giving all of us a thoughtful and insightful picture of what’s happening in the ME world. Sadly, this is horrifying, but not too surprising if we consider the broader political climate we live in. The people who commented here before me and mentioned the politics in the lineup of the ‘collaborative’ are surely right. This is BS. I do hope Fauci really has changed his tune because he owes all of us.
All the best to everyone here. Take good care.
I had to sit with this for a day before commenting. How incredibly deflating that these public health officials with (presumable) political clout can come to such conclusions, which effectively ignore the scientific process. The Time article is rife with contradictions and highly editorialized. I hope it’s quickly forgotten given how many millions of people are suffering. Hopefully these “professionals” aren’t practicing medicine on actual humans. Talk about gaslighting! Good riddance to them – leave ME/CFS and Long Covid to the experts in the field and the patients – WE GOT THIS. Stay strong my friends.
We got this! I love that! Sent a chill through me, actually. Thanks!
Don’t let disparaging comments from some sink your mood. There are still researchers who think spending time and energy on this is very worthwhile. I just got my weekly Medscape and it was on Covid. I couldn’t figure out how to forward the entire thing, and anyway, I believe Medscape requires a registration to receive. I picked out some of the more pertinent articles and copied each. Sorry this is rather long. Some, like the one which reaffirms that Long Covid is NOT psychological was shocking to me. Are people still saying this??? At any rate, perhaps there are some gems for those who want to read the links..
Antidepressants for Long Covid?
https://www.medscape.com/viewarticle/998111?ecd=mkm_ret_231118_mscpmrk_pcp_covid_etid6068092&uac=139183PJ&impID=6068092
Traditional remedy may prevent Long Covid Hospitalizations
https://www.medscape.com/viewarticle/998454?ecd=mkm_ret_231118_mscpmrk_pcp_covid_etid6068092&uac=139183PJ&impID=6068092
Does Paxlovid ease Long Covid symptoms?
https://www.medscape.com/viewarticle/997878?ecd=mkm_ret_231118_mscpmrk_pcp_covid_etid6068092&uac=139183PJ&impID=6068092
CV risk and Covid; new data
https://www.medscape.com/viewarticle/997638?ecd=mkm_ret_231118_mscpmrk_pcp_covid_etid6068092&uac=139183PJ&impID=6068092
Does mental illness cause Long Covid?
https://www.medscape.com/viewarticle/998355?ecd=mkm_ret_231118_mscpmrk_pcp_covid_etid6068092&uac=139183PJ&impID=6068092
Striking findings on Long Covid recovery
https://www.medscape.com/viewarticle/998107?ecd=mkm_ret_231118_mscpmrk_pcp_covid_etid6068092&uac=139183PJ&impID=6068092
The future of Covid 19
https://www.medscape.com/viewarticle/989643?ecd=mkm_ret_231118_mscpmrk_pcp_covid_etid6068092&uac=139183PJ&impID=6068092
On a personal note, I have been taking TUDCA for several weeks now and am noticing a definite improvement in mental functioning—energy, not so much. Poco a poco. Also your comment, Cort, that some doctors are advised to give patients ‘supportive care’ by ‘active (hopefully empathetic) listening—rather than actual treatment recommendations—I have begun to notice this in my last several appointments. Then I think Medicare is paying all these doctors a lot of money and they are basically doing—NOTHING. I can talk to my cats and they do ‘active listening’ too—for free. They even sometimes purr which is a lot more comfort than what I am getting from the medical establishment. Some in our Congress want to cut ‘entitlement spending’ which is an overarching way of saying stop wasting money on diseases like ME/CFS and Long-Covid–like you have just written about. Yes, it makes me mad too!
Nice!
Thankfully, this group does seem to be an outlier.
Why does hope have to be so hard?
When I first became ill more than 30 years ago, I had hope. Surely, such bizarre and overwhelming symptoms would be figured out before long. Now, I don’t think this will be solved in my lifetime.
“Either there is nothing to find, or currently available tools are insufficient to detect and validate mechanisms behind the myriad of symptoms.”
What I really have a hard time with is even doctors that get these “conditions” are getting turn on BY THEIR OWN PEERS
WE NEED WHISTLEBLOWERS!!!
I am incensed by this attitude by such influential individuals. What is their game? Yes, I have seen the speculations already, many of which are no doubt valid. Thanks for fighting your way through and making us aware of this nauseating piece, Cort. They are certainly sabotaging the lives of the many Long COVID and ME/CFS sufferers. This illogical bit (not the only one) gets me:
‘Focus should be on health services research and on measures that directly impact the welfare of Long COVID sufferers: prevention, improved prognosis, access to empathetic care and quality of life issues. This includes investigation into symptom management, the effectiveness of comprehensive care delivery models, and social science research on actionable solutions applicable to at-risk subgroups (e.g., women, obstetrics and pediatric patients, people of color, underserved populations).’
How on earth do they hope to get care right if they are clueless on the causes and mechanisms of the condition? What kind of care could they possibly offer? I guess the key is in the phrases ‘social science research’ ’empathetic care’.
Hello, we’ve seen this before in ME/CFS where doctors have been seen to be instructed to convey empathy and conning the patients into believing that they take them seriously. Then, give ’em rehab, there’s always CBT/GET!
It is so similar isn’t it? The difference for me is the great lengths the authors in the Time piece and others have gone to present themselves as champions for long COVID and how concerned they are for both them and the trials people with ME/CFS have experience – and then jerk the carpet out from under them – and propose stopping where we are.
What really galls me is that the Time Magazine authors suggest money be devoted to ‘supportive services’ for those with ME/CFS/Long-Covid yet the way the medical/insurance system is set up, to give a patient all the services they require almost never happens.
Now on a more positive note, Stanford has a host of clinical trials on ME/CFS, some now recruiting. Unfortunately I don’t fit the criteria for the one I find most interesting (I’m too old). Here’s the link; https://med.stanford.edu/chronicfatiguesyndrome/research.html
And here I am a Stanford patient and nobody there told me about these. I had to read about it from somewhere else!!!
You can almost see the smerk on the one ladies face while talking
I’m of course looking forward to Part Ii of this article series, but find these stances a bit time warped considering the Serotonin theory advanced just recently that may tie all of these conditions together. A very quick browse of Interferon 1 and Lyme yielded the inflammatory cytokine a culprit in chronic Lyme as well.
I hate to be cynical, but perennial treatment, rather than cure, is also perennially profitable. Looking forward to Dr. Fauci’s take on this problem.
ME/CFS and Long Covid are NOT the same. I should know since I have had both. I was diagnosed in 1984 with what eventually came to be named ME/CFS.
Last year, I had a complete cardiac work up. Ultrasound, cat scan, two week halter monitor. I did not have A-Fib or high blood pressure.
In August, I got Covid at a national veterans’ convention where I was a speaker. Now I have A-Fib and high blood pressure and a rash around my mouth called cheilitis. None of these were ever symptoms of my ME/CFS and all are more immediately concerning than the long-term symptoms that cause such misery in ME/CFS.
A search of Google or PUB ME will show you that all of these conditions have been reported post-Covid.
While there are some similar symptoms , trying to put these two discrete conditions in the same basket does nobody any good.
Sorry to hear about that! It is an amazing virus.
This one of the problems with long COVID research isn’t it? There are a large group of patients who have very similar symptomology to ME/CFS and then there are long COVID patients with very different symptoms and, at present, they all appear to be being put in the same basket. It’s rather remarkable that despite that similar findings have popped up all over the place. How much better the research will be when it can differentiate the subsets.
Some subsets are being delineated – https://pubmed.ncbi.nlm.nih.gov/37915075/
Again, sorry to hear about the A-FIb and blood pressure! How interesting, though, that the virus produced a different set of symptoms in you – an ME/CFS patient!
Thanks for your reply, Cort. I forgot to add that both my husband and I had Covid and we both took Paxlovid, but he didn’t have any residual symptoms. Mine didn’t show up until a month after we thought we were okay. Evidently serious symptoms can appear any time up to a year after Covid. Five hundred of the 700 veterans who attended the conference were reported to have gotten Covid. I have not heard how they have fared, but many were in very poor health to begin with.
It is certainly an amazing virus. I see a lot of health problems in people after covid19. Vaccinated and unvaccinated. So something is going on her. you can also see it in the figures. Increase in many different diseases and conditions. Cardiovascular diseases, rheumatic diseases, more pneumonia, skin diseases. Excess mortality in all age groups. I had corona and have ME/CFS/POTS, luckily I recovered from it after 1 week. What strikes me is that I suffer more from skin complaints than before.
🤬 I’m speechless…… I agree that there’s a story behind the story and it most likely relates to money. Either monitory gain ( individuals or organizations) or reducing loss ( insurance ?). Or maybe even shifting it to pet projects with hidden non medical agendas. Even worse ..could it be ignorance ?
I hope there is significant blowback by the amazing scientists working to find answers. How can “P” and “W” ignore the fascinating studies that are out there ??????? Getting to the “bottom “ of CFS/ long Covid would no doubt benefit a multitude of chronic illnesses . Have they no vision ??????
It’s corruption. No other explanation
Thanks for writing this, Cort. It’s truly bizarre. But it’s not as though we haven’t frequently encountered people making no earthly sense.
We all know the honest,good researchers are just getting started.
What scares me the most is once the science on this disease(s) are found by researchers and drugs are found to turn this all around, the corruption will continue with made up drugs that NOT pull us up and back to normal.
An example being aids.
A lifetime of non covered drugs for most of us that are too poor to afford them.
Yes, the answer is in the brain. It is a CENTRAL NERVOUS SYSTEM disorder. That’s it! Very simple. No need to complicate things. Now if every ME/CFS patient gets on board with this theory, then maybe we can solve it ourselves. EVERYTHING is impacted by the nervous system, including the IMMUNE system.
where is the source of these quotes and that this article is reporting from? I’m trying to form a letter for sufferers to send en mass. I need to fact check and read up on what’s been going on here.
Good for you! There are links to the articles 6 or 7 paragraphs down in the blog.
I think further research will uncover uncomfortable truths for medicine. Vaccine injuries, glyphosate, plastics deregulation of forever chemicals are contributing to the root cause.
It makes zero sense. Let’s just forget about trying to save anyone from anything…
Such betrayal of the hippocratic oath and decency. Not a surprise.
People like Bob naviaux know the score.
The vaccine rollout for covid just shows how loose and fast the corporations are with our health.
Money. Power. Psychopathic behaviour
Hello All Faithful,
About 1.5 to 2 years ago I started to partcipate here on HR and I was emailing Cort with my latest mental updates. My email address got password-hacked.. (I soon reclaimed it using MS Authenticator passworless access tech) but it put me out of touch with Cort.
When Covid was called a pandemic in Mar. 2020, I started to research viruses in general and specifically Covid and have been doing so since… 3.5 years. What happened next was that a few months later I met a woman who was “making the best of” having official diagnoses of CFS, Fibro, Raynaud’s, Celiac, Venous Insufficiency, Photophobia or nightblindness (unable to drive), with non-restorative sleep being a central player… and 2 or 3 more diagnoses. I felt this was too much coincidence to have 8 separate pathologies. I figured out they were all Vascular.
I have never relented. I have concluded many times that I have found the cores of FM and CFS, but always with an open mind I admit my gaps in knowledge. But ultimately, this all seems in my understanding to come down to Endothelial cell health and function…. and dysfunction, mostly. If you are cold in the morning or most of the day… but then have night sweats, but freeze if you pull back the covers, and awake at 3-3:30 am… this appears to be a cortisol crisis. And women in childbearing years use much more cortisol than men.
Believe me or not, but this is true: since my friend had suffered both heavy Asian Flue and Hong Kong Flu infections, and said it felt like HKF never really left her, this has helped me to see the big picture of Autoimmune diseases. Therefore I looked at ALL pandemics of 1900-2019, from Flus to Coronas, and the one thing they all had in common was vascular damage to the endothelial cells. Those Endos control inflammation. If they never feel free of the attacker, they never cease inflammation.
The idea for me is that “sick” is a fairly vague word, but with some fairly definitive symptoms… and yet…. there is , according to me: only ONE KIND OF SICK. It’s really dyshomeostasis centered around the HPA axis, and most likely stemming from vascular damage which PARTICULARLY impacts the microvessels in the Kidneys, and that TRULY derails the Electroylyte train. When this happens, goodbye correct levels of calcium and magnesium and salt, and therefore blood volume/pressure when you just-want-to-flex-your-muscles and do stuff.
I have followed Cort, as well as the scientists he follows, as well as my own sources.
He was very excited when the doctor/research community found HUGE similarities between ME/CFS and long covid, except with Long Covid being much worse. And the researchers then saying… “Oh !! look at all that pre-existing data that we don’t have to gather.”
I said it earlier here this fall, and I’ll say it again: Dr. Terry Wahls healed her MS from being in a tilt-recline wheelchair and no mobility to back doing the rounds in her hospital, with an amped-up paleo-type diet. She is claiming to be changing the treatment arena of Autoimmune disease in general. In addition, Dr. Kari Young doesn’t even address the diagnoses by name. She calls it “if you suffer from Autoimmune….” I don’t like that abbreviation, but it has its merits.
Strangely, sadly, ironically, since I cared so much for my friend who had 8 diagnoses, she cut me loose as a friend saying I was overwhelming her (frankly: it was emotional overload from brain fog) with too much info. Now I can see that that was true. I overdid that.
I have seen Cort get excited about the NIH saying they are going to go full steam ahead into Long Covid research given the backstory of ME/CFS as a fantastic resource.
But In my next comment, I will tell you where I, a non-doctor, non-nurse, with a brother who is a nurse, and my interview with my ex-friend… and now having— guess what: long-covid issues in my bladder and rectum….
have landed in my convictions
what a show of nonsense. fully unexperienced people in the field without being connected in any way to the scientific establishment influencing patients mentally to give up. Patients, as a full professor and CEO of Streasure4Health, which sees the unifying underlying mechanism AND ways to come to a satisfying treatment, I would like to say to you: do not give up and do not let yourself being influenced by such nobodies. they do nothing more than mentally influencing you to give it up. There is change coming.
Cort…thanks for your exhaustive coverage of this! Doctors who suggest that people with Long Covid and ME/CFS should just be provided supportive, empathetic care are giving up and ignoring the myriad physical abnormalities already identified. They are also ignoring the healing paths taken by many who have overcome these conditions. They give up because of their inability to break out of their medical silo thinking and view these conditions holistically.
Thanks Jon
Somehow, I don’t think your remedies or others like yours are going to be high on their list (lol)
Shockingly Dr Shepherd, Medical Adviser to the UK ME Association has endorsed the views expressed in Miller and Williams paper. I urge any fellow Brits to write to the ME Association to express their views on this article:
https://meassociation.org.uk/2023/11/a-new-radical-approach-needed-for-long-covid-research/
very puzzling! t makes me wonder if he read the entire article? He thinks it will revitalize research – I see the opposite…
I did wonder myself. But in the extracts from the original article he includes the conclusion that biomedical research is a waste of resources. Maybe he just didn’t take the time to qualify his response. But I think deeply damaging for a mainstream ME support and advocacy organisation to be seen to be supporting withdrawing from biomedical research. I have written to the ME Association, including a link to this article, and await their response.
It’s pretty baffling. The Time and the STAT articles actually start off good – I was encouraged by them – until I got nearer the end and then it hit – no more attempts to find the biomarkers and understand the mechanisms behind these diseases.
Instead of biological research the focus should be on “health services research”, symptom management and the use of social science research…”It’ll be interesting to hear what they say. Hard to believe that ME Action supports that approach.
Since research outcomes are by definition unknown its obviously a bit of a gamble as to where best direct research resources. I was somewhat frustrated with the result of the ME research prioritisation exercise undertaken in the UK (2022), which resulted in management of most symptoms falling out of the top 10.
https://www.jla.nihr.ac.uk/priority-setting-partnerships/ME-CFS/top-10-priorities.htm
Management of PEM came in at number 1, but as an addendum to the obvious need for biomedical research in this area. Sleep management only came in at number 17 and gut health not within the top 18, and yet these are obvious cornerstones for maintaining, if not improving, health in people with ME. And I can certainly say from experience that poor sleep just makes all the other symptoms harder to bear, and constantly tinkering with my diet to minimise gastric symptoms occupies far too much of my limited mental bandwidth. So I’m definitely in favour of research aimed at symptom management, but not to the exclusion of research into biomarkers or more fundamental biomedical research.
Plenty of severe patients die from ME/CFS. This notion that it doesn’t kill must be discarded. Disappointing article—-I hope the community pushes back; lives of severe patients do hang in the balance (myself included).
Despite the fact that all know of people who have died with this disease the mortality studies that have been done do not find this to be true. ME/CFS does not cause rates of death in the same way that multiple sclerosis, heart disease, etc. does.
We don’t need for lots of deaths, though, to get this disease the kind of attention it should – the horrifyingly high reductions in functionality – which outstrip those caused by MS, heart disease, etc. should be more than enough.
I’m more cynical about why they want to “move on”. When something doesn’t make sense, like not being interested in more research, there is usually a clandestine reason behind it. Could it be, they want to stay as far away from Covid 19 for fear something could be discovered about the vaccinations that wouldn’t be good to know??
I’m more cynical about why they want to “move on”. When something doesn’t make sense, like not being interested in more research, there is usually a clandestine reason behind it. Could it be, they want to stay as far away from Covid 19 for fear something could be discovered about the vaccinations that wouldn’t be good to know??
What about those of us with no diagnosis, no medical care, no employer support, no family and friend supporting us, and, no hope? We are those unaccounted for and living a life with no quality just to continue suffering? Research and the thought that there may be some treatment in the future is what was keeping keeping me alive.
I’ve seen bizarre stuff on the Internet and it is obvious some are still rooted in dismissal based on an outdated diagnosis labeled as hypochondriacs, told to seek psychological treatment, told to exercise, etc.
Without Cort Johnson’s work, most of us would still be lost in the stacks of medical research papers. In my 30’s, my daughter was diagnosed with Juvenile Idiopathic Arthritis. Autoimmune diseases are often a diagnosis through “exclusion”, my immediate family – daughter 22 months now 34 with many complications to include Ankylosing Spondylitis, mother most likely Juvenile Idiopathic Arthritis (Rheumatic Fever in childhood) with Psoriasis and Ankylosing Spondylitis, 2 sisters – one died at 56 Lupus with Antiphospholipid Syndrome – Catastrophic APS that looks a lot like the Cytokine damage you see with Covid-19 and another sister that died at 56 of a CNS form of Lupus. Diagnosis through exclusion is possible for ME/CFS Long Covid, etc.
Thanks, Ann – that’s quite a family history you have. My mother died of Sjogren’s Syndrome. I can’t but think there’s a connection. Good luck with your daughter.