zeynep tufekci

zeynep tufekci

06-11-2022

14:10

I saw a lengthy article strongly suggesting that Long Covid and/or ME are "a psychological phenomenon" and the patients would benefit from exercise therapy. A thread on why the first makes no sense, and why the second makes sense for a subset of LC, but *not* the ME-like folks.

Many ME patients also trace their illness to a viral event. Then we got a pandemic, a novel virus, and then a subset of people developed the *same* baffling confusing symptoms that ME patients had, without even having heard of ME, ever. That's not how psychological spread works.

Some effort at clinical history on this subset patients makes it very clear that many were *utterly* confused by their symptoms, did what their doctors and previous intuition told them, and kept pushing hard. And then they found the ME advice, and things clicked *afterwards*.

In fact, tragically, since much of the worst off patients are from the pre-vaccine period, there are a lot of health care workers among them, some also previously doubtful of the idea of ME as post-viral illness. Tragically, they changed their minds, so should their colleagues.

"There are all sorts of people online claiming ME and/or LC, and some make weird on untrue claims". Well, yeah welcome to social media. Please don't judge the reality of the Long Covid wave by looking at Twitter. There are even frauds who fake cancer. Cancer is still real.

Second, exercise is great for almost everyone else, including Long Covid patients who don't have the ME version or post-exertional malaise. It makes no sense that many previously very active people suddenly all developed post-exertional malaise, without having ever heard of it.

The same article (in NY MAG) says no reason for the long-standing gender disparity is known. When I talk to the neurovirologists and immunologists in the field, they can't shut up about the sex differences in the immune system, and how most auto-immune illnesses are more women.

So it's true that biomarkers and immune system differences aren't conclusively answered, the reality is there's been *pathetically* little research, but what little research has been done has consistently found many leads.. the scientists then don't get funded to follow properly.

In 2014, clinical immunologist Nancy Klimas dryly noted that male-pattern baldness was getting more funding from NIH than ME. Things upticked a tiny bit before the pandemic but not much. And viruses (very tiny) and immunity (very complex) are both *expensive* to research.

If one spends any amount of time with the ME or LC/ME-subset patient community, it's so obvious THEY'RE DESPERATE TO DO BE ABLE TO DO MORE. Many may become depressed by their condition, but I don't see how that difference with traditional clinical depression isn't so obvious.

I've a lifelong friend with major depression who benefits from exercise, and starts falling off that routine when a depressive episode starts creeping up. I've spent a lifetime nudging her. The difference between her fatigue and the ME or LC/ME fatigue couldn't be starker to me.

In my last piece, I described and named post-exertional malaise. We got letters saying "so that's WHAT I HAVE" from baffled people. It's so counterintuitive and weird, and still so little known, that it's the clinical guidelines/screening that's lacking.

Finally, is all Long Covid a version of ME? Obviously not. Despite claims, nobody really knows how many are—existing studies are subsets in clinics, etc. not representative samples. Long Covid alone is an umbrella term with too broad a range to be useful for that question.

Are psychosocial phenomena real, and the mind and the body very much intertwined? Yes, of course. Would most everyone benefit from therapy. Sure. But frontline doctors can, and should, screen for PEM and anhedonia before sending people off to exercise or choosing therapy type.

I know some doctors I disagree with on this want their profession to stop externalizing "in your head" as unreal. Worthy goal. But it's also true, this is an area where patients have been, historically, gaslighted by the medical profession. Fixing that is also a worthy goal.

As I wrote before, I am *also* convinced studying the interaction between post-viral sequelae and immune system will unlock so much more. We *just* learned multiple sclerosis, in fact, follows from EBV decades earlier. What *else* is behind that door?

So, it's 2022, the evidence base has long moved beyond ME or LC patients with post-exertional malaise should just exercise and do CBT, but what remains lacking is proper clinical guidelines to identify who'd benefit from what, as both exercise and CBT are great... when indicated.

To add my priors: I'm a lifelong exerciser. I just bought a rowing machine. I exercise almost every day. I'm a sociologist very interested in social influence like the recovered memory scandal. Causal inference is one of my academic focuses. This just wasn't adding up like that.

If you search my Twitter, you’ll find that I half-joked over the years my back up plan to academia was to open up an exercise business. I teach recovered memory scandal as an example of social influence going awry. Just putting it here as my priors.

I hadn't tagged the @NYMag author to avoid personalizing, but he responded, and based on his statements, I now think, beyond the substantive disagreement, author was genuinly not up to date with either research or history on ME, post-exertional malaise and biomarkers/treatments.

For example, ME research has been historically very, very underfunded. It was a few million per year till recently. I spent months tracking that billion. Most of it is in an observational study, trials will start *next year*, no deep phenotyping funding.

NIH, till recently, put $5-6 million a year to ME. Especially in the US research context, that'll do very little. I personally had *two* separate ~$500K grants to survey a small number of middle schools and to analyze the data. No expensive lab equipment. 20% of all ME funding.

Currently, it's up to $17 million a year, recent uptick. Still very little, and again, a tiny fund compared to diseases with much lower prevalence. The idea that ME research hasn't been historically, deeply underfunded compared to disease burden or prevalance is simply not true.

If patients resist something harmful, it's not "oh they're irrationally afraid". Replies are full of people who did risky, dangerous things—till they got a virus. WHO, CDC, NHS now agree with them. LC and ME clinicians could easily have addressed this.

This was concerning to me. First, patients TRY everything. Even browsing the forums or interviewing a few would make that clear. They try so many things. They definitely try graded-exercise in large numbers, and stop often long after it makes them worse.

Also, GED and CBT are just not what many, many experienced, evidence-based clinicians I interviewed ever said were "only" tools in their toolkit. There are many drugs/treatments to help relieve symptoms that are routinely used. Yes, they should be trialed! (See lack of funding).

Forget fearful of trying stuff, my experience researching ME/CFS and Long Covid, is that, lacking better options due to the chronic underfunding of treatment trials, some patients are *desparately* trying even dangerous things, a la early HIV communities that tried everything.

While substantive disagreements are one thing, I think above assertions were just wrong. ME is underfunded, many patients do try GET, are highly-motivated to try everything, many examples of athletes, mountaineers etc. who now can't walk for 10 minutes, clear virus before/after.

Finally, it was implied mine is just patient advocacy. But some of the (Twitter) patient community really disagrees with some of my conclusions on prevalence studies' quality. It's not "repeat what patients say" without research, but that it's important to do that research.

Rapid, huge effort on treatment trials—also informs basic science. Deep phenotyping—expensive but need for biomarkers. Integrate ME and LC research—stop reinventing wheels, follow up leads. Mass wearable data from 2020-2022—can it replace/augment CPET?



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