It should be recognized that a large percentage of people with "long haul" have ME/chronic fatigue syndrome. This disease was widespread long before COVID but has bee, and continues to be, ignored by both the NIH and CDC. Grant funding is lower than for male pattern baldness and it is the lowest in relation to disease burden. Had we paid attention to ME/CFS we would not be so stumped by long haul. But, instead, the disease has been put under the rug. Doctors don't want to treat patients and patients are stigmatized being told it is "all in your head"- just "get over it". As the article points out, we have a long history in medicine of doctors assuming the patient has nothing wrong with them just because the doctor doesn't understand the problem.
I agree. I learned a lot about ME/CFS during my research. I mean, I knew some stuff but I learned a lot more details, and I agree with what you are saying: if we had learned from that, we would have been far ahead on this, too. In fact, to this day, ME/CFS researchers are shut out from Long Covid specific research funds, which makes no sense!
I mentioned ME/CFS and the likelihood of it emerging big time from COVID in response to one of your Insight posts, Zeynep. At the time, there wasn't much interest in the subject. But, I am convinced that ME/cfs has a viral/neurological component as someone who got a bad virus that never went away and also developed neurological symptoms. When the first reports surfaced of people losing their sense of smell, even if that was their only symptom, emerged- I thought this was a virus with a heavy neurological component. And feared we would be where we are today.
And a big thank you to you, zeynep, for your research. Your piece this morning is crucially important, and I hope you can gather influential proponents to in fact take this seriously. There is nothing that compares to serious scientific research.
Anne, I agree, and what struck me about what you say is that male baldness is, well--MALE research, whereas most ME/chroic fatigue syndrome sufferers are FEMALE. I think mysogyny plays a role that doesn't get enough attention.
Just want to briefly chime in here as someone who had (and has since recovered from) ME/CFS.
It is my strong belief that the disorder is psychogenic, and that many people with Long Covid are, indeed, dealing with the same issues. For years, I tried a slew of purported remedies -- not one of them worked except for long, intensive psychotherapy. Without getting too far into the weeds, emotional trauma can and does cause physically debilitating symptoms. A nasty sinus infection precipitated the onset of my symptoms, but the infection itself was not the root cause.
Initially I was completely resistant to the idea that therapy was the answer, assuming (like nearly all ME/CFS sufferers) that the implication was that my condition was "all in my head." It wasn't, but that's certainly where it had its roots. Until the stigma around chronic, emotionally-rooted conditions lifts and patients are believed at face value, I don't believe any of them will accept the psychogenic premise -- and I completely understand their feelings. They've been treated with hostility for so long that the only valid-seeming response is defensiveness.
As I've watched the Long Covid saga unfold, I've thought long and hard about how to share this story because I think it cuts to the core of suffering for many, many people. I'm working on a memoir of sorts to chronicle the experience, but at the same time, I've wanted to reach out to a trusted voice to offer what I have.
Zeynep, if you read this: I'd love to talk about this if you're willing!
And some people just recover over time, with or without therapy. I don't doubt that there's interaction between mental and physical well-being, and maybe it was indeed the therapy that helped you, but clearly, there are many people for whom it's a lot more complex, and that therapy of the kind that you found helpful did not help. So I'm glad to hear of your recovery, but I think there's too much evidence otherwise to generalize your experience to everyone else. That said, therapy can be helpful to many people anyway, even if to deal with the suffering of a chronic, debilitating condition and should be offered to people so that those who want to see if it helps them in any of the dimensions of their life can partake in the opportunity.
Thanks for your response -- I grant what you've said about the generalizability of my individual experience. Of course, in the absence of any clear breakthroughs using other modalities, my individual experience (and that of others in similar boats) is all I have to draw upon.
All I can say is that I hope Congress takes you up on your idea for a post-viral institute. And if/when they do, they include an arm devoted to the nexus of mind/body and its role in ME/CFS and a host of other conditions.
True for alcohol and drug addiction, too. Some never recover, some "age out" or whatever on their own, some recover but only with medical or psychological or support group intervention.
Nick, I cannot, obviously, say anything about your situation and don't know if you had classic ME/CFS symptoms such as post exertional malaise. Which, one has to admit, is a strange symptom and is almost unique among people with cfs and also many people with long haul. I wasn't diagnosed for 11 years and was so confused about why I could go for a walk on day 1, but, on day 3 could barely leave the couch. As someone with ME/cfs for 20 years, I do not find your comments on target at all. Much research has been done on the question of whether the disease is psychogenic. And it has shown that people with ME have no greater or lesser psychological issues than people without. Furthermore, when cognitive therapy coupled with encouragement to increase exertion was made the way to go- esp in England, this lead to an increased level of disease rather than a lesser level. In fact, there has been litigation over this issue in the British courts which have shown that the people doing the study and treating the patients falsified their data.
There are scores of physical abnormalities that have been found w people with ME/cfs. Some of them are now being seen today in people with long haul.
Emotional trauma is a stress on the body. However, for most of us, intensive, long psychotherapy does nothing to deal with the symptoms of this horrible disease.
I'm chiming in as another person who's had ME/CFS for over twenty years and has had a strong spontaneous partial recovery. Here's another data point of one: I'm doing superbly, especially for someone with my severity of onset, but as far as I can tell, I'm no more and no less emotionally healthy than I ever was; conversely, even major stressors didn't seem to affect the course of the illness. I didn't undergo any particular journey into untangling life's meaning in order to recover. I have no blog-length post to write about it. My best bet is that I simply got lucky and may have benefited from getting it younger than the average age of onset.
When I say I'm a person with ME/CFS, what I mean is that my condition is that as described as such under the modern International Consensus Criteria, with all the hallmarks of that illness including PEM. It matters.
A major issue in ME/CFS research is that the same researchers who have been juking the data have also been juking the case definitions. I won't speculate about motivations, but it's undeniable that certain prominent psych-focused researchers have thrown their considerable weight behind increasingly broad research definitions that overlap strongly with conditions known to respond to those reseachers' favored intervention. In fact, under their broadest definitions, a patient might have "CFS" without any physical symptoms at all! Leonard Jason is a professor of psychology at DePaul who has done excellent work on this. (https://www.leonardjason.com/2018/05/03/q-and-a-with-leonard-jason/ has an overview in plain language.)
The definitional problem shows up at the doctor's office when those outdated watered-down case definitions get watered down even further. Psychological ailments are extremely common, while ICC-ME/CFS is roughly only as common as multiple sclerosis; even if only a minority of mentally ill people identify fatigue as their worst symptom or otherwise latch onto ME/CFS, this creates a huge problem of odds. With an overbroad clinical definition, it's easy for a clinician to get a misleading experience of what ME/CFS is like, because the majority of her "CFS" patients might well not have it by modern ICC standards. That harms the occasional actual ME/CFS patient; it also harms the depressed or traumatized patient who may experience a delay getting care that could help them.
All fair points, Anne. I want to stress that, when I was scrambling for answers at the outset of my condition, I found the "all in your head" commentary incredibly condescending. Same, too, of the doctors who more or less said I was crazy without saying it. In making the psychogenic case for the origins of ME/CFS, I'm trying to strike the balance between demonstrating my beliefs and affirming the legitimacy of the condition -- it's real, it consumed years of my life, and I wouldn't wish it on Satan incarnate. I hope you receive all of my comments here in good faith.
I had every symptom associated with ME/CFS: post-exertional malaise so bad I was bedridden for 2 months, "brain fog," an inability to recall both short- and long-term memories, a migraine-esque headache that never went away, and so on. It was hell, and I thought it was eternal.
If your experience has been anything like mine, you've tried every biochemical/pharmaceutical intervention in the books (and some not!). The vast majority haven't worked, and those that have had only temporary effects -- which, in my case, made the return to baseline all the more devastating. I don't have an exact sum available, but I spent north of $15,000 on these interventions. So not only did I think I was going to be ill forever, I thought I'd be ill AND destitute.
The story of how I came to my resolution deserves a blog-length post in itself, but the summary point is this: therapy provided lasting relief where nothing else did. And in my conversations with other people suffering from psychogenic conditions -- ME/CFS but also POTS, various kinds of crushing physical pain -- the only remedies that helped were cognitive/psychological in nature.
I should add that psychotherapy isn't the only one: other survivors have mentioned DNRS, psychedelic therapy, and various breathing programs (many developed in response to the rise of long Covid). The data here is admittedly anecdotal, but given the paucity of real research on these conditions, it made me sit up and take notice.
To your point about the British therapy study: I grant that just any ol' therapy probably won't do. For it to have any real effect, the practitioner likely needs to be familiar with the nature of psychogenic conditions themselves. My therapist, for example, suffered from panic attacks of escalating intensity to the point where she became agoraphobic, among other symptoms. These conditions are so insidious that, to my mind, the only way out is with an insider's knowledge and guidance.
And yes, I think it's probably true that people with ME/CFS have no more psychological issues than those that don't. The difference isn't the degree of the issues, though -- it's the individual's sensitivity to them. I have two brothers, both of whom had the same upbringing I did, but who (it goes without saying) do not have my mind. I reacted in ways that they did not, which left me with scars they likely do not have. As the adage goes, attitude is everything.
I'll close with this: when I was at my worst, I would have opened myself up to anything that could help. Therapy did just that. In the absence of any hard data suggesting clear pharmaceutical pathways to relief, the cognitive/psychological options remain the only path I know.
If you're interested in discussing more offline, I'd be happy to provide contact info. I'll also leave some resources that helped me recover:
I'm glad that you are well now. However, before you encourage others to try therapy you might want to consider 2 things: There are many of us who were told the problem was psychological and spent lots of time and money trying to go into the deepest areas of our brains to find the cause of our problems. The only problem though, unlike in your situation, we were emotionally quite healthy (other than the natural feelings that come with suddenly being very sick). 2. There is a lot of evidence that when people are encouraged to believe that they are well, or that the problem is psychological, they will push themselves physically and only get worse. Both of these things happened to me. I never spent large amounts of money on medical therapy because there was none that could help.
I do believe that stressors bring on ME/cfs and probably other post-viral illnesses. When the stressors are emotional, perhaps therapy will make all the difference. When they are viral, perhaps not.
"In the absence of any hard data suggesting clear pharmaceutical pathways to relief, the cognitive/psychological options remain the only path I know."
I'm not sure what you mean by cognitive/psychological. If you're interpreting it in the broadest possible sense -- "anything not pharmaceutical" -- then that would encompass physiotherapy and neurorehabilitation like Graded Motor Imagery (GMI), but also surgery(!):
GMI does retrain the brain, but not in a psychological way. More people would understand GMI as neurorehabilitation than as psycho/cognitive therapy. GMI is used for stroke as well as chronic pain.
Sometimes, people with lingering illness do get better except for their brain. Their brain somehow gets stuck in a maladaptive state, so that kicking it out of that state cures their illness completely. Sometimes, psychotherapy may be enough by itself. Other times, neurorehabilitation like GMI does the trick. But very commonly, chronically ill people continue to have physical problems that kick the brain back into its perceived maladaptive state.
I do not have ME/CF. I do have a connective-tissue disorder (EDS) and atopy (asthma, allergies, etc). These are measurable physical abnormalities, yet much of their treatment is "cognitive": change habits to limit allergen exposure, improve sleep and fitness -- and, yes, get better at coping! Central sensitization (the brain amping up pain perception) is a huge problem for chronic illness. It can trigger migraines and other fun. Central sensitization is "just" a maladaptive brain state, but one some people keep getting kicked into because of physical triggers. Sinus swelling is one of mine.
For a long time, my EDS was mistaken for psychogenic symptoms. Psych care did help at first -- coping skills don't care what you learn them for, and chronic physical illness can disorder mood. But the supposition my problem was psychosomatic -- that if the psych pros just psyched me harder, they could fix me -- ultimately proved destructive. It became patient-blaming and, as more fanciful (and false) psychiatric hypotheses got dragged in, medically dangerous. Having what remained of my work ethic pathologized as "hypomania" justifying antimanics was a memorable lowlight. Medical gaslighting. It can leave you crazier than when you started.
"Pain is a motivator. It exists to get us to act. We hurt when our brains reckon we should do something differently, for safety … but safety is not always possible. The nature of the danger isn’t always clear. Or avoidable.
"And the brain worries too much: from hangnails to fibromyalgia, it overstates the danger … for rock solid evolutionary reasons. So it can’t be overruled by wishing, force of will, or a carefully cultivated good attitude. The brain powerfully but imperfectly controls how we experience potentially threatening stimuli, but I’m sorry to report that you do not control your brain."
This may be the most important article on Covid published so far because it deals with the source of many problems — the production of science and medicine. They are produced as surely as autos and gasoline are produced & they too emit many unfortunate externalities.
Appreciate you voicing the historical context of this ... Like the 1918 pandemic, the one in the 1890s (which some believe was a coronavirus) also had reports of people struggling for years after. ... I had COVID-like virus in March 2020 -- SoB was the worst of the symptoms -- but because my symptoms were not severe enough for a hospital (good SPo2) I never was tested (Various tests later never could ID the original virus). Now, 2+ years on, I still can't shake the same pattern of heart/chest/lung symptoms and spikey HRs that gets re-triggered from either too much exercise OR if I catch anything resembling a cold. I'm mostly functional and thankful/grateful for that but I can no longer run/exercise like I once did (I used to do marathons). Doctors are trying to help but are focused on symptom management and I'm concerned that this misses the larger picture/underlying problem and re-thinking post-viral illness more globally could help solve that.
One larger concern that I also have is whether if I get COVID now whether that could make things worse (I've been vaxxed), since there's a group of folks who contend each infection will make your immune system less functional, although I keep telling myself this is fear-mongering and the other side of the conspiracy-laden anti-vaccine coin -- which also likes to blame long COVID symptoms on the vaccines. And amid all the uncertainty we also have people trying to sell questionable "cures" and treatments for long COVID and similar conditions. We really need a stronger counter to this misinformation as so many are trying to use the suffering of post-viral illness to other ends.
I am one of those who has long-covid-like symptoms... but I've had it for more than 20 years. I'm glad the medical professionals are finally beginning to pay attention to the similarities between Long Covid & Chronic Fatigue Syndrome/Myalgic Encephalomyelitis & other autoimmune conditions. However, I'm finding the sword is dual-edged. Doctors who fob off CFS/ME are also dismissive of Long Covid. I've yet to see anything from the UK Gov or the NHS on how they plan to treat the knock-on effects of these illnesses in the long term.
A huge question for research & clinical tracking is can Long Covid sufferers get it worse if they get Covid again (same question for ME/CFS sufferers.) In the meantime I'll probably be masking indoors and on planes and buses forever.
(Yes, me too: probably started after a flu-like illness because I remember back in 1982 the doc saying "you're still tired from that flu.")
When I realized this about my autoimmune disease, it changed everything about how I approached my disease/life. A center for post-viral studies would be an amazing start to a world where chronically ill people matter.
I think there are so many overlapping and (typically) brilliant insights here. As a pediatric hospital medicine specialist with training in health services research who works mainly as a "front-line" clinician, in part in a "medical-behavioral unit" I have so many thoughts. First, we in medicine have indeed co-opted the insurance-based distinction between "psychiatric" and "medical" problems so that we talk about "psychiatric" problems as "inorganic" and "medical" problems as "organic".
It feels absurd to me. As I like to say, people are one, organic being. Labeling a malady as "psychiatric" only means we haven't figured out what or how to measure to distinguish the biological difference behind the morbidity we see. Just because we don't know it doesn't mean it isn't there. If the brain isn't working in a way that is conducive to health and well-being, why is that fundamentally different from the liver not working in a way that is conducive to health and well-being?
As a pediatrician, I am also very accustomed at this point to giving a hand-waving explanation of various maladies in children as "it's probably viral." That it is an unsatisfyingly vague answer doesn't make it wrong. Viruses are fascinating because they, and our body's response to them, produces so many and varied symptoms. And we are every day learning more and more about the longer-term effects of these infections. I am skeptical that any of us should expect to live in a world where people don't get sick, but I agree it would benefit all of us to understand better how these microscopic organisms shape our world.
Finally, I would note that knowledge is necessary but not sufficient to change practice and operations. The operational structure of medicine, and the structure of society, are both inadequate to our current health needs. We have tried over the past several decades to use market mechanisms to build a more "efficient" system, yet we still have the most expensive health care in the world while simultaneously boasting bragging rights to the worst population health outcomes of the industrialized world. Can we build an institute to tackle health care operations, too?
I so appreciate your work. Thank you for all you do.
Clearly Long Covid is a thing; in fact, I have a couple of friends I can think of just off the top of my head that had symptoms well after they had cleared the virus from their systems. What is frustrating for me are the accounts of what could be called "phantom" Long Covid, where the claim is that someone had a totally mild initial case (typically after being vaccinated), yet somehow suffered severe long-term aftereffects. I'm sure this has happened as well, but I can't believe that it is extremely common as these people claim. Anecdotally, I don't know anyone who suffered serious long term effects after being vaccinated, and I can't think of any public figures for whom this is true either. The studies these folks cite all seem to have major flaws, such as not differentiating between, say, occasional coughing fits and seemingly permanent brain fog and just lumping everything under "Long Covid." People like Denise Dewald post stuff about Long Covid constantly that is about as unsupported as the stuff Alex Berenson posts.
This isn't to detract from the very real suffering of people that actually have Long Covid. They 100% exist. But for a lot of people, the idea of a long recovery from an infectious disease isn't enough...it has to be a lot more nebulous and scary to make for more engaging twitter threads.
I believe getting to the bottom of long Covid and many autoimmune disorders would require addressing the environment and the many chemicals that people born beginning in the latter half of the 20th century have ingested through both bad water, bad food and bad air.. I don't see scientists or government officials or profit-making corporations having any incentive to look at the complex issue of environmental poisoning.
Sentences in Zeynep Tufekci’s article have an unnerving tendency to make a firm start but then wander off, leaving the reader in suspense. Some illustrations:
"This could impact everything from how we understand and approach conditions like depression and anxiety, as well as many chronic conditions."
We recognize the familiar “everything from A to B” construction, but where’s the "to" clause? A mystery.
"Of all the topics I’ve researched throughout the pandemic, none have left me more despairing, on behalf of the patients, but also captivated by the historic, scientific and human story—I knew a few broad outlines from before, but everywhere I looked, I saw hugely-important issues and dynamics that, to this day, are underappreciated."
Another mystery: more despairing than... than what? Who can say? We have a comparison, which implies at least two entities, but are given only one.
"Post-viral ailments pop up in so many areas: cancers, neurogenerative disorders, chronic complex conditions and who knows what else, and yet, while the dots are hard to connect, and not enough is properly researched to begin with."
“While” implies simultaneity, but we don’t know what the “hard [connecting]” and “[improper] research” are simultaneous with.
"Also: the way a forced, binary mind/body duality operates in both clinical medicine and scientific research is an important sociological and scientific story, both to be written more about but crucially, to address."
“Both” requires “and,” not “but.”
Must we add good writing and careful editing to the list of COVID victims? Three years into the pandemic, is no one minding the store?
Your Times article appeared with remarkable timing in my life. In the summer of 2016, an ulcerative colitis flare combined with undiagnosed C. diff and almost killed me. I became skeletal and spent a month in the hospital before the C. diff was finally diagnosed and treated, just in time. It took years to recover. But I never fully recovered: ever since that summer, I've been struggling with mysterious energy crashes and brain fog. I described this to my doctors regularly, and they were always sympathetic but had no answers for me, except to tell me that these symptoms are not typical of ulcerative colitis.
Finally, one frustrated morning a couple weeks ago, I googled things like "energy crashes" and "chronic fatigue" and quickly landed on ME/CFS. It was electrifying, as much as it's possible to feel electrified through crushing fatigue. This is what I have. I most likely got it as a post-viral response to C. diff and the trauma my body endured that summer. I couldn't believe neither my PCP nor my GI doctor thought to talk to me about it. I'm certain this is due to the lack of awareness, even among doctors, about this condition.
A week or so after beginning to learn about it, your article appeared. It lit a fire under me. I have "only" the mild form of ME/CFS--it made me quit my 30-hour-a-week job and decide not to have kids, which was heartbreaking, and I routinely miss out on things others can do because of energy crashes. But I'm usually up and about, able to putter through life and rest when I have a crash, and enormously blessed by financial stability due to my husband's salary and great health insurance. I want to use all these blessings to become an advocate for ME/CFS awareness and research. This condition has been devastating for me, and many have it so much worse than me.
Does anyone have suggestions for ways I can help, groups I can join, etc.? I am a newbie but eager to learn and help...albeit at a restful, careful pace. :)
" . . . just getting started on viruses . . . " One take could be, "Well, it's about time!" meaning we are in deficit and running behind to the detriment of people experiencing viral problems. Another take could be, "Excellent, now that we have some knowledge and technology, we can get something done!" In view of the latter, this writer would enthusiastically assert, "No, you're not wrong!"
Let's put the blame for this mess where it belongs. It lies in the denial of syndromes akin to ME/CFS experienced by Post Vietnam and post Gulf War Veterans, for whom the American Government did not want to take the financial responsibility for ongoing health care. The attitude arose from the lack of a National Public Health Service in the USA and the concept of medical liability. Many GWS patients might also be classified as CFS or FM.
The only way they could do this was to classify Gulf War Syndrome as a form of psychological trauma, notably a form of depression that required social and support group handling rather than expensive, state funded, medical treatment. Saying "it is all in your head" was too inflammatory, so they went down the "Wholistic" conceptual path blaming the suicides on mental trauma rather than an insufferable and untreated physical disease process that left people isolated and desperate
ME/CFS, and to a high degree FM all got caught up in this mess and now long CoVid.
"Wholistic medicine" has a fatal flaw. All too easily doctors caught up in it confuse consequences with causes. If a CFS patient is depressed then "the cause must be depression" CDC tried to avoid this by disallowing clinically depressed patients from studies into CFS. But the research medicos simply ignored this or amended the CDC Criteria so that they could get the desired result - generally "depression that can be cured with Cognitive Behavioural Therapy" - the great Money Cow in medicine of a treatment that is expensive but does not cure.
CFS ME CFIDS GWS and now Long CoVid ALL point in the same direction- to physical problems relating to viral, bacteriological and toxicity, incidents and illnesses that have set or allowed to be initiated malignant physical processes. As a CFS sufferer I have never come across a person with a full "remission" from ME/CFS that I am convinced actually had it. In my experience of some 40 odd years one learns to pace it but it does not remit!. The person with the "remission" was simply misdiagnosed - generally by a doctor that can't see the difference between ME/CFS and "depression"
I used to advise people with post viral syndromes told to take CBT treatment to do so - if only to provide enough people falling flat on their faces to get a bunch of idiots to realise they had got it wrong. They might get a dose of the jitters but heck if they got well then at least they escaped the effects of misdiagnosis. CBT was an effective test to (painfully) distinguish physical disease processes from psychological problems (albeit one might argue much depression is physical)
So let's cut to the chase. We have a whole empire of physical medicine we do not understand and through decades of neglect and under-research worsened by callous disregard for physical suffering has left us unready for the assault on public health of the long term physical results of wars and pandemics
We don't need a whole chain of denial that has to be broken through - we can stop that now and address the reality of a problem we have had since forever.
Denial began over a hundred years ago with the label of "neurasthenia" - we should be a hundred years beyond that now. But is sure as heck does not feel that way at times
A famous CFS treating professor in Australia considered that "depression" in CFS was largely irritation and sadness amongst a group of people with a perfect right to be miserable..
Nice article. I agree with almost all you said (as usual).
One quibble is with your criticism of some of the data dredging studies. I would not let "the perfect be the enemy of the good". Of course you are correct that their data may lump together patients and conditions that it will turn out to be important to distinguish. But I suspect we are so much in the dark here that we really don't know which distinctions are important and which are irrelevant.
So yes, these studies are "looking for the keys under the lamp-post". But at least they are looking! And when you have no idea where the keys might be and it's pitch black everywhere else, maybe the lamp-post is a good place to start looking?
(Continuing with the lamp-post metaphor, of course your main point is that we should build proper lighting infrastructure specifically designed to help us find the keys, and of course I completely agree).
It's very curious to me, and surprising, that although I grew up with family who had lived through the 1918/19 pandemic (I'm almost 68 - my grandparents and great-aunts/uncles, etc were born between 1879 and 1905), NO ONE ever mentioned any trauma from it. I'd always heard about the "Spanish Flu epidemic" and that it killed so many millions, but it always existed, and was spoken of (if it was spoken of at all) as an event seemingly outside of time. Given how central COVID has been for all of us these last 2 1/2 years it seems so strange that they spoke about it so little.
That's fascinating. My family on both sides also survived the 1918 pandemic and interestingly, did talk about it. It was rather dramatic: one child got so sick they had to learn to walk again after recovering. One person fell sick in summer 1918, didn't remember anything afterward until they woke up on the morning of November 11, hearing bells ring because the war was over (Armistice Day). One person was in France fighting in WWI and died there of influenza at about 19 years old, never making it home. So when Covid happened, I had a very strong sense of "Here we ago again, almost 100 years to the day."
Couldn’t agree more. Our ability to examine the sequelae of a COVID infection requires an interdisciplinary approach. And as you so aptly point out, the historical descriptions of lingering responses to an initial microbial insult truly demands that for the HEALTH OF THE SPECIES we take these conditions seriously! My question is how do we get the entrenched siloed experts to look beyond their silos? I have one suggestion. Ask to appear on the This Week in Virology podcast. Most of the scientists involved have been struggling with how to approach studying long COVID and are willing to consider the issues involved in the entrenched silos they find themselves in.
It should be recognized that a large percentage of people with "long haul" have ME/chronic fatigue syndrome. This disease was widespread long before COVID but has bee, and continues to be, ignored by both the NIH and CDC. Grant funding is lower than for male pattern baldness and it is the lowest in relation to disease burden. Had we paid attention to ME/CFS we would not be so stumped by long haul. But, instead, the disease has been put under the rug. Doctors don't want to treat patients and patients are stigmatized being told it is "all in your head"- just "get over it". As the article points out, we have a long history in medicine of doctors assuming the patient has nothing wrong with them just because the doctor doesn't understand the problem.
I agree. I learned a lot about ME/CFS during my research. I mean, I knew some stuff but I learned a lot more details, and I agree with what you are saying: if we had learned from that, we would have been far ahead on this, too. In fact, to this day, ME/CFS researchers are shut out from Long Covid specific research funds, which makes no sense!
I mentioned ME/CFS and the likelihood of it emerging big time from COVID in response to one of your Insight posts, Zeynep. At the time, there wasn't much interest in the subject. But, I am convinced that ME/cfs has a viral/neurological component as someone who got a bad virus that never went away and also developed neurological symptoms. When the first reports surfaced of people losing their sense of smell, even if that was their only symptom, emerged- I thought this was a virus with a heavy neurological component. And feared we would be where we are today.
And a big thank you to you, zeynep, for your research. Your piece this morning is crucially important, and I hope you can gather influential proponents to in fact take this seriously. There is nothing that compares to serious scientific research.
Anne, I agree, and what struck me about what you say is that male baldness is, well--MALE research, whereas most ME/chroic fatigue syndrome sufferers are FEMALE. I think mysogyny plays a role that doesn't get enough attention.
Just want to briefly chime in here as someone who had (and has since recovered from) ME/CFS.
It is my strong belief that the disorder is psychogenic, and that many people with Long Covid are, indeed, dealing with the same issues. For years, I tried a slew of purported remedies -- not one of them worked except for long, intensive psychotherapy. Without getting too far into the weeds, emotional trauma can and does cause physically debilitating symptoms. A nasty sinus infection precipitated the onset of my symptoms, but the infection itself was not the root cause.
Initially I was completely resistant to the idea that therapy was the answer, assuming (like nearly all ME/CFS sufferers) that the implication was that my condition was "all in my head." It wasn't, but that's certainly where it had its roots. Until the stigma around chronic, emotionally-rooted conditions lifts and patients are believed at face value, I don't believe any of them will accept the psychogenic premise -- and I completely understand their feelings. They've been treated with hostility for so long that the only valid-seeming response is defensiveness.
As I've watched the Long Covid saga unfold, I've thought long and hard about how to share this story because I think it cuts to the core of suffering for many, many people. I'm working on a memoir of sorts to chronicle the experience, but at the same time, I've wanted to reach out to a trusted voice to offer what I have.
Zeynep, if you read this: I'd love to talk about this if you're willing!
And some people just recover over time, with or without therapy. I don't doubt that there's interaction between mental and physical well-being, and maybe it was indeed the therapy that helped you, but clearly, there are many people for whom it's a lot more complex, and that therapy of the kind that you found helpful did not help. So I'm glad to hear of your recovery, but I think there's too much evidence otherwise to generalize your experience to everyone else. That said, therapy can be helpful to many people anyway, even if to deal with the suffering of a chronic, debilitating condition and should be offered to people so that those who want to see if it helps them in any of the dimensions of their life can partake in the opportunity.
Thanks for your response -- I grant what you've said about the generalizability of my individual experience. Of course, in the absence of any clear breakthroughs using other modalities, my individual experience (and that of others in similar boats) is all I have to draw upon.
All I can say is that I hope Congress takes you up on your idea for a post-viral institute. And if/when they do, they include an arm devoted to the nexus of mind/body and its role in ME/CFS and a host of other conditions.
True for alcohol and drug addiction, too. Some never recover, some "age out" or whatever on their own, some recover but only with medical or psychological or support group intervention.
Per medieval Christianity ... cur alii, non alii?
Nick, I cannot, obviously, say anything about your situation and don't know if you had classic ME/CFS symptoms such as post exertional malaise. Which, one has to admit, is a strange symptom and is almost unique among people with cfs and also many people with long haul. I wasn't diagnosed for 11 years and was so confused about why I could go for a walk on day 1, but, on day 3 could barely leave the couch. As someone with ME/cfs for 20 years, I do not find your comments on target at all. Much research has been done on the question of whether the disease is psychogenic. And it has shown that people with ME have no greater or lesser psychological issues than people without. Furthermore, when cognitive therapy coupled with encouragement to increase exertion was made the way to go- esp in England, this lead to an increased level of disease rather than a lesser level. In fact, there has been litigation over this issue in the British courts which have shown that the people doing the study and treating the patients falsified their data.
There are scores of physical abnormalities that have been found w people with ME/cfs. Some of them are now being seen today in people with long haul.
Emotional trauma is a stress on the body. However, for most of us, intensive, long psychotherapy does nothing to deal with the symptoms of this horrible disease.
I'm chiming in as another person who's had ME/CFS for over twenty years and has had a strong spontaneous partial recovery. Here's another data point of one: I'm doing superbly, especially for someone with my severity of onset, but as far as I can tell, I'm no more and no less emotionally healthy than I ever was; conversely, even major stressors didn't seem to affect the course of the illness. I didn't undergo any particular journey into untangling life's meaning in order to recover. I have no blog-length post to write about it. My best bet is that I simply got lucky and may have benefited from getting it younger than the average age of onset.
When I say I'm a person with ME/CFS, what I mean is that my condition is that as described as such under the modern International Consensus Criteria, with all the hallmarks of that illness including PEM. It matters.
A major issue in ME/CFS research is that the same researchers who have been juking the data have also been juking the case definitions. I won't speculate about motivations, but it's undeniable that certain prominent psych-focused researchers have thrown their considerable weight behind increasingly broad research definitions that overlap strongly with conditions known to respond to those reseachers' favored intervention. In fact, under their broadest definitions, a patient might have "CFS" without any physical symptoms at all! Leonard Jason is a professor of psychology at DePaul who has done excellent work on this. (https://www.leonardjason.com/2018/05/03/q-and-a-with-leonard-jason/ has an overview in plain language.)
The definitional problem shows up at the doctor's office when those outdated watered-down case definitions get watered down even further. Psychological ailments are extremely common, while ICC-ME/CFS is roughly only as common as multiple sclerosis; even if only a minority of mentally ill people identify fatigue as their worst symptom or otherwise latch onto ME/CFS, this creates a huge problem of odds. With an overbroad clinical definition, it's easy for a clinician to get a misleading experience of what ME/CFS is like, because the majority of her "CFS" patients might well not have it by modern ICC standards. That harms the occasional actual ME/CFS patient; it also harms the depressed or traumatized patient who may experience a delay getting care that could help them.
All fair points, Anne. I want to stress that, when I was scrambling for answers at the outset of my condition, I found the "all in your head" commentary incredibly condescending. Same, too, of the doctors who more or less said I was crazy without saying it. In making the psychogenic case for the origins of ME/CFS, I'm trying to strike the balance between demonstrating my beliefs and affirming the legitimacy of the condition -- it's real, it consumed years of my life, and I wouldn't wish it on Satan incarnate. I hope you receive all of my comments here in good faith.
I had every symptom associated with ME/CFS: post-exertional malaise so bad I was bedridden for 2 months, "brain fog," an inability to recall both short- and long-term memories, a migraine-esque headache that never went away, and so on. It was hell, and I thought it was eternal.
If your experience has been anything like mine, you've tried every biochemical/pharmaceutical intervention in the books (and some not!). The vast majority haven't worked, and those that have had only temporary effects -- which, in my case, made the return to baseline all the more devastating. I don't have an exact sum available, but I spent north of $15,000 on these interventions. So not only did I think I was going to be ill forever, I thought I'd be ill AND destitute.
The story of how I came to my resolution deserves a blog-length post in itself, but the summary point is this: therapy provided lasting relief where nothing else did. And in my conversations with other people suffering from psychogenic conditions -- ME/CFS but also POTS, various kinds of crushing physical pain -- the only remedies that helped were cognitive/psychological in nature.
I should add that psychotherapy isn't the only one: other survivors have mentioned DNRS, psychedelic therapy, and various breathing programs (many developed in response to the rise of long Covid). The data here is admittedly anecdotal, but given the paucity of real research on these conditions, it made me sit up and take notice.
To your point about the British therapy study: I grant that just any ol' therapy probably won't do. For it to have any real effect, the practitioner likely needs to be familiar with the nature of psychogenic conditions themselves. My therapist, for example, suffered from panic attacks of escalating intensity to the point where she became agoraphobic, among other symptoms. These conditions are so insidious that, to my mind, the only way out is with an insider's knowledge and guidance.
And yes, I think it's probably true that people with ME/CFS have no more psychological issues than those that don't. The difference isn't the degree of the issues, though -- it's the individual's sensitivity to them. I have two brothers, both of whom had the same upbringing I did, but who (it goes without saying) do not have my mind. I reacted in ways that they did not, which left me with scars they likely do not have. As the adage goes, attitude is everything.
I'll close with this: when I was at my worst, I would have opened myself up to anything that could help. Therapy did just that. In the absence of any hard data suggesting clear pharmaceutical pathways to relief, the cognitive/psychological options remain the only path I know.
If you're interested in discussing more offline, I'd be happy to provide contact info. I'll also leave some resources that helped me recover:
https://www.tmswiki.org/forum/painrecovery/ -- targeted to those with chronic pain, but replace "pain" with any other symptom and the message is the same
https://www.painpsychologycenter.com/ -- the org where I found my therapist
https://www.amazon.com/Mindbody-Prescription-Healing-Body-Pain/dp/0446675156 -- a now dated book that first blazed the trail of psychogenic condition therapy
https://www.amazon.com/Way-Out-Revolutionary-Scientifically-Approach/dp/059308683X -- an updated response to the above book
I'm glad that you are well now. However, before you encourage others to try therapy you might want to consider 2 things: There are many of us who were told the problem was psychological and spent lots of time and money trying to go into the deepest areas of our brains to find the cause of our problems. The only problem though, unlike in your situation, we were emotionally quite healthy (other than the natural feelings that come with suddenly being very sick). 2. There is a lot of evidence that when people are encouraged to believe that they are well, or that the problem is psychological, they will push themselves physically and only get worse. Both of these things happened to me. I never spent large amounts of money on medical therapy because there was none that could help.
I do believe that stressors bring on ME/cfs and probably other post-viral illnesses. When the stressors are emotional, perhaps therapy will make all the difference. When they are viral, perhaps not.
"In the absence of any hard data suggesting clear pharmaceutical pathways to relief, the cognitive/psychological options remain the only path I know."
I'm not sure what you mean by cognitive/psychological. If you're interpreting it in the broadest possible sense -- "anything not pharmaceutical" -- then that would encompass physiotherapy and neurorehabilitation like Graded Motor Imagery (GMI), but also surgery(!):
https://www.pathways.health/what-is-graded-motor-imagery-and-how-can-it/
GMI does retrain the brain, but not in a psychological way. More people would understand GMI as neurorehabilitation than as psycho/cognitive therapy. GMI is used for stroke as well as chronic pain.
Sometimes, people with lingering illness do get better except for their brain. Their brain somehow gets stuck in a maladaptive state, so that kicking it out of that state cures their illness completely. Sometimes, psychotherapy may be enough by itself. Other times, neurorehabilitation like GMI does the trick. But very commonly, chronically ill people continue to have physical problems that kick the brain back into its perceived maladaptive state.
I do not have ME/CF. I do have a connective-tissue disorder (EDS) and atopy (asthma, allergies, etc). These are measurable physical abnormalities, yet much of their treatment is "cognitive": change habits to limit allergen exposure, improve sleep and fitness -- and, yes, get better at coping! Central sensitization (the brain amping up pain perception) is a huge problem for chronic illness. It can trigger migraines and other fun. Central sensitization is "just" a maladaptive brain state, but one some people keep getting kicked into because of physical triggers. Sinus swelling is one of mine.
For a long time, my EDS was mistaken for psychogenic symptoms. Psych care did help at first -- coping skills don't care what you learn them for, and chronic physical illness can disorder mood. But the supposition my problem was psychosomatic -- that if the psych pros just psyched me harder, they could fix me -- ultimately proved destructive. It became patient-blaming and, as more fanciful (and false) psychiatric hypotheses got dragged in, medically dangerous. Having what remained of my work ethic pathologized as "hypomania" justifying antimanics was a memorable lowlight. Medical gaslighting. It can leave you crazier than when you started.
Pain is weird:
https://www.painscience.com/articles/pain-is-weird.php
https://todd-hargrove-xyvo.squarespace.com/blog/2014/a-systems-perspective-on-chronic-pain
Recovery is weird, too: https://www.bettermovement.org/blog/2012/the-paradox-of-placebo-and-the-health-governor
"Pain is a motivator. It exists to get us to act. We hurt when our brains reckon we should do something differently, for safety … but safety is not always possible. The nature of the danger isn’t always clear. Or avoidable.
"And the brain worries too much: from hangnails to fibromyalgia, it overstates the danger … for rock solid evolutionary reasons. So it can’t be overruled by wishing, force of will, or a carefully cultivated good attitude. The brain powerfully but imperfectly controls how we experience potentially threatening stimuli, but I’m sorry to report that you do not control your brain."
https://www.painscience.com/articles/mind-over-pain.php
This may be the most important article on Covid published so far because it deals with the source of many problems — the production of science and medicine. They are produced as surely as autos and gasoline are produced & they too emit many unfortunate externalities.
Thank you.
Appreciate you voicing the historical context of this ... Like the 1918 pandemic, the one in the 1890s (which some believe was a coronavirus) also had reports of people struggling for years after. ... I had COVID-like virus in March 2020 -- SoB was the worst of the symptoms -- but because my symptoms were not severe enough for a hospital (good SPo2) I never was tested (Various tests later never could ID the original virus). Now, 2+ years on, I still can't shake the same pattern of heart/chest/lung symptoms and spikey HRs that gets re-triggered from either too much exercise OR if I catch anything resembling a cold. I'm mostly functional and thankful/grateful for that but I can no longer run/exercise like I once did (I used to do marathons). Doctors are trying to help but are focused on symptom management and I'm concerned that this misses the larger picture/underlying problem and re-thinking post-viral illness more globally could help solve that.
One larger concern that I also have is whether if I get COVID now whether that could make things worse (I've been vaxxed), since there's a group of folks who contend each infection will make your immune system less functional, although I keep telling myself this is fear-mongering and the other side of the conspiracy-laden anti-vaccine coin -- which also likes to blame long COVID symptoms on the vaccines. And amid all the uncertainty we also have people trying to sell questionable "cures" and treatments for long COVID and similar conditions. We really need a stronger counter to this misinformation as so many are trying to use the suffering of post-viral illness to other ends.
I am one of those who has long-covid-like symptoms... but I've had it for more than 20 years. I'm glad the medical professionals are finally beginning to pay attention to the similarities between Long Covid & Chronic Fatigue Syndrome/Myalgic Encephalomyelitis & other autoimmune conditions. However, I'm finding the sword is dual-edged. Doctors who fob off CFS/ME are also dismissive of Long Covid. I've yet to see anything from the UK Gov or the NHS on how they plan to treat the knock-on effects of these illnesses in the long term.
A huge question for research & clinical tracking is can Long Covid sufferers get it worse if they get Covid again (same question for ME/CFS sufferers.) In the meantime I'll probably be masking indoors and on planes and buses forever.
(Yes, me too: probably started after a flu-like illness because I remember back in 1982 the doc saying "you're still tired from that flu.")
When I realized this about my autoimmune disease, it changed everything about how I approached my disease/life. A center for post-viral studies would be an amazing start to a world where chronically ill people matter.
How so? (Just curious)
I think there are so many overlapping and (typically) brilliant insights here. As a pediatric hospital medicine specialist with training in health services research who works mainly as a "front-line" clinician, in part in a "medical-behavioral unit" I have so many thoughts. First, we in medicine have indeed co-opted the insurance-based distinction between "psychiatric" and "medical" problems so that we talk about "psychiatric" problems as "inorganic" and "medical" problems as "organic".
It feels absurd to me. As I like to say, people are one, organic being. Labeling a malady as "psychiatric" only means we haven't figured out what or how to measure to distinguish the biological difference behind the morbidity we see. Just because we don't know it doesn't mean it isn't there. If the brain isn't working in a way that is conducive to health and well-being, why is that fundamentally different from the liver not working in a way that is conducive to health and well-being?
As a pediatrician, I am also very accustomed at this point to giving a hand-waving explanation of various maladies in children as "it's probably viral." That it is an unsatisfyingly vague answer doesn't make it wrong. Viruses are fascinating because they, and our body's response to them, produces so many and varied symptoms. And we are every day learning more and more about the longer-term effects of these infections. I am skeptical that any of us should expect to live in a world where people don't get sick, but I agree it would benefit all of us to understand better how these microscopic organisms shape our world.
Finally, I would note that knowledge is necessary but not sufficient to change practice and operations. The operational structure of medicine, and the structure of society, are both inadequate to our current health needs. We have tried over the past several decades to use market mechanisms to build a more "efficient" system, yet we still have the most expensive health care in the world while simultaneously boasting bragging rights to the worst population health outcomes of the industrialized world. Can we build an institute to tackle health care operations, too?
I so appreciate your work. Thank you for all you do.
Clearly Long Covid is a thing; in fact, I have a couple of friends I can think of just off the top of my head that had symptoms well after they had cleared the virus from their systems. What is frustrating for me are the accounts of what could be called "phantom" Long Covid, where the claim is that someone had a totally mild initial case (typically after being vaccinated), yet somehow suffered severe long-term aftereffects. I'm sure this has happened as well, but I can't believe that it is extremely common as these people claim. Anecdotally, I don't know anyone who suffered serious long term effects after being vaccinated, and I can't think of any public figures for whom this is true either. The studies these folks cite all seem to have major flaws, such as not differentiating between, say, occasional coughing fits and seemingly permanent brain fog and just lumping everything under "Long Covid." People like Denise Dewald post stuff about Long Covid constantly that is about as unsupported as the stuff Alex Berenson posts.
This isn't to detract from the very real suffering of people that actually have Long Covid. They 100% exist. But for a lot of people, the idea of a long recovery from an infectious disease isn't enough...it has to be a lot more nebulous and scary to make for more engaging twitter threads.
Absolutely. We need better definitions and research, especially since conflating everything is a great disservice to those suffering the most.
I believe getting to the bottom of long Covid and many autoimmune disorders would require addressing the environment and the many chemicals that people born beginning in the latter half of the 20th century have ingested through both bad water, bad food and bad air.. I don't see scientists or government officials or profit-making corporations having any incentive to look at the complex issue of environmental poisoning.
The Brits have been paying attention for awhile. (An unrecognized benefit of a national health service?) https://www.nice.org.uk/guidance/ng206
Sentences in Zeynep Tufekci’s article have an unnerving tendency to make a firm start but then wander off, leaving the reader in suspense. Some illustrations:
"This could impact everything from how we understand and approach conditions like depression and anxiety, as well as many chronic conditions."
We recognize the familiar “everything from A to B” construction, but where’s the "to" clause? A mystery.
"Of all the topics I’ve researched throughout the pandemic, none have left me more despairing, on behalf of the patients, but also captivated by the historic, scientific and human story—I knew a few broad outlines from before, but everywhere I looked, I saw hugely-important issues and dynamics that, to this day, are underappreciated."
Another mystery: more despairing than... than what? Who can say? We have a comparison, which implies at least two entities, but are given only one.
"Post-viral ailments pop up in so many areas: cancers, neurogenerative disorders, chronic complex conditions and who knows what else, and yet, while the dots are hard to connect, and not enough is properly researched to begin with."
“While” implies simultaneity, but we don’t know what the “hard [connecting]” and “[improper] research” are simultaneous with.
"Also: the way a forced, binary mind/body duality operates in both clinical medicine and scientific research is an important sociological and scientific story, both to be written more about but crucially, to address."
“Both” requires “and,” not “but.”
Must we add good writing and careful editing to the list of COVID victims? Three years into the pandemic, is no one minding the store?
Your Times article appeared with remarkable timing in my life. In the summer of 2016, an ulcerative colitis flare combined with undiagnosed C. diff and almost killed me. I became skeletal and spent a month in the hospital before the C. diff was finally diagnosed and treated, just in time. It took years to recover. But I never fully recovered: ever since that summer, I've been struggling with mysterious energy crashes and brain fog. I described this to my doctors regularly, and they were always sympathetic but had no answers for me, except to tell me that these symptoms are not typical of ulcerative colitis.
Finally, one frustrated morning a couple weeks ago, I googled things like "energy crashes" and "chronic fatigue" and quickly landed on ME/CFS. It was electrifying, as much as it's possible to feel electrified through crushing fatigue. This is what I have. I most likely got it as a post-viral response to C. diff and the trauma my body endured that summer. I couldn't believe neither my PCP nor my GI doctor thought to talk to me about it. I'm certain this is due to the lack of awareness, even among doctors, about this condition.
A week or so after beginning to learn about it, your article appeared. It lit a fire under me. I have "only" the mild form of ME/CFS--it made me quit my 30-hour-a-week job and decide not to have kids, which was heartbreaking, and I routinely miss out on things others can do because of energy crashes. But I'm usually up and about, able to putter through life and rest when I have a crash, and enormously blessed by financial stability due to my husband's salary and great health insurance. I want to use all these blessings to become an advocate for ME/CFS awareness and research. This condition has been devastating for me, and many have it so much worse than me.
Does anyone have suggestions for ways I can help, groups I can join, etc.? I am a newbie but eager to learn and help...albeit at a restful, careful pace. :)
We have made so much progress in so many areas. Essays like this make me feel like we are just getting started on viruses. Convince me I'm wrong.
" . . . just getting started on viruses . . . " One take could be, "Well, it's about time!" meaning we are in deficit and running behind to the detriment of people experiencing viral problems. Another take could be, "Excellent, now that we have some knowledge and technology, we can get something done!" In view of the latter, this writer would enthusiastically assert, "No, you're not wrong!"
Let's put the blame for this mess where it belongs. It lies in the denial of syndromes akin to ME/CFS experienced by Post Vietnam and post Gulf War Veterans, for whom the American Government did not want to take the financial responsibility for ongoing health care. The attitude arose from the lack of a National Public Health Service in the USA and the concept of medical liability. Many GWS patients might also be classified as CFS or FM.
The only way they could do this was to classify Gulf War Syndrome as a form of psychological trauma, notably a form of depression that required social and support group handling rather than expensive, state funded, medical treatment. Saying "it is all in your head" was too inflammatory, so they went down the "Wholistic" conceptual path blaming the suicides on mental trauma rather than an insufferable and untreated physical disease process that left people isolated and desperate
ME/CFS, and to a high degree FM all got caught up in this mess and now long CoVid.
"Wholistic medicine" has a fatal flaw. All too easily doctors caught up in it confuse consequences with causes. If a CFS patient is depressed then "the cause must be depression" CDC tried to avoid this by disallowing clinically depressed patients from studies into CFS. But the research medicos simply ignored this or amended the CDC Criteria so that they could get the desired result - generally "depression that can be cured with Cognitive Behavioural Therapy" - the great Money Cow in medicine of a treatment that is expensive but does not cure.
CFS ME CFIDS GWS and now Long CoVid ALL point in the same direction- to physical problems relating to viral, bacteriological and toxicity, incidents and illnesses that have set or allowed to be initiated malignant physical processes. As a CFS sufferer I have never come across a person with a full "remission" from ME/CFS that I am convinced actually had it. In my experience of some 40 odd years one learns to pace it but it does not remit!. The person with the "remission" was simply misdiagnosed - generally by a doctor that can't see the difference between ME/CFS and "depression"
I used to advise people with post viral syndromes told to take CBT treatment to do so - if only to provide enough people falling flat on their faces to get a bunch of idiots to realise they had got it wrong. They might get a dose of the jitters but heck if they got well then at least they escaped the effects of misdiagnosis. CBT was an effective test to (painfully) distinguish physical disease processes from psychological problems (albeit one might argue much depression is physical)
So let's cut to the chase. We have a whole empire of physical medicine we do not understand and through decades of neglect and under-research worsened by callous disregard for physical suffering has left us unready for the assault on public health of the long term physical results of wars and pandemics
We don't need a whole chain of denial that has to be broken through - we can stop that now and address the reality of a problem we have had since forever.
Denial began over a hundred years ago with the label of "neurasthenia" - we should be a hundred years beyond that now. But is sure as heck does not feel that way at times
A famous CFS treating professor in Australia considered that "depression" in CFS was largely irritation and sadness amongst a group of people with a perfect right to be miserable..
Now you have millions of such people.
Nice article. I agree with almost all you said (as usual).
One quibble is with your criticism of some of the data dredging studies. I would not let "the perfect be the enemy of the good". Of course you are correct that their data may lump together patients and conditions that it will turn out to be important to distinguish. But I suspect we are so much in the dark here that we really don't know which distinctions are important and which are irrelevant.
So yes, these studies are "looking for the keys under the lamp-post". But at least they are looking! And when you have no idea where the keys might be and it's pitch black everywhere else, maybe the lamp-post is a good place to start looking?
(Continuing with the lamp-post metaphor, of course your main point is that we should build proper lighting infrastructure specifically designed to help us find the keys, and of course I completely agree).
It's very curious to me, and surprising, that although I grew up with family who had lived through the 1918/19 pandemic (I'm almost 68 - my grandparents and great-aunts/uncles, etc were born between 1879 and 1905), NO ONE ever mentioned any trauma from it. I'd always heard about the "Spanish Flu epidemic" and that it killed so many millions, but it always existed, and was spoken of (if it was spoken of at all) as an event seemingly outside of time. Given how central COVID has been for all of us these last 2 1/2 years it seems so strange that they spoke about it so little.
That's fascinating. My family on both sides also survived the 1918 pandemic and interestingly, did talk about it. It was rather dramatic: one child got so sick they had to learn to walk again after recovering. One person fell sick in summer 1918, didn't remember anything afterward until they woke up on the morning of November 11, hearing bells ring because the war was over (Armistice Day). One person was in France fighting in WWI and died there of influenza at about 19 years old, never making it home. So when Covid happened, I had a very strong sense of "Here we ago again, almost 100 years to the day."
Couldn’t agree more. Our ability to examine the sequelae of a COVID infection requires an interdisciplinary approach. And as you so aptly point out, the historical descriptions of lingering responses to an initial microbial insult truly demands that for the HEALTH OF THE SPECIES we take these conditions seriously! My question is how do we get the entrenched siloed experts to look beyond their silos? I have one suggestion. Ask to appear on the This Week in Virology podcast. Most of the scientists involved have been struggling with how to approach studying long COVID and are willing to consider the issues involved in the entrenched silos they find themselves in.