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.

Expand full comment

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.

Expand full comment
Aug 25, 2022·edited Aug 25, 2022

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.

Expand full comment

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.

Expand full comment

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.

Expand full comment

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.

Expand full comment

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.

Expand full comment

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.

Expand full comment

The Brits have been paying attention for awhile. (An unrecognized benefit of a national health service?) https://www.nice.org.uk/guidance/ng206

Expand full comment
Aug 25, 2022·edited Aug 25, 2022

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?

Expand full comment

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. :)

Expand full comment

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.

Expand full comment

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.

Expand full comment

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).

Expand full comment

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.

Expand full comment

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.

Expand full comment