What Wired got wrong #1: bias and a mismatched ending

In my last post, I said I’d write a critique of Wired’s article, ‘The Painful Truth About Long Covid’. Having read it again, I’ve decided to write several. First, I want to address the way that Levinovitz frames opposition to exercise or brain retraining as lacking in credibility through cherry-picking and misrepresentation. I’ll also explore the weird shift in tone at the end.

In the first main paragraph, Levinovitz writes, ‘BMJ’s systematic review of ways to treat long Covid lists two as supported by moderate evidence, cognitive behavioral therapy and physical exercise.’ He then reveals that he attended a Long Covid Conference where ‘the world’s leading scientific authorities brought up exercise only to warn against it.’ But he gives no reason why they may have done so. He refers to the BMJ’s systematic review, but not to the UK’s 2021 review of the NICE guidelines for ME/CFS, which found all studies into graded exercise therapy and CBT to be of low or very low quality.

The omission of anything scientific that undermines his argument (that brain retraining and exercise may hold the answers to infection-associated chronic conditions (IACCs)) is a theme throughout the article. It is also common among proponents of these treatments more generally, who often lean on a false dichotomy between evidence-based science and patient activism to make their case.

When Levinovitz discusses the PACE trial (I know - not again!), he simply writes that it drew ‘positive results’. He does not provide any information that would allow readers to make up their own minds about this. He then writes, ‘Among patients and advocacy organizations, the reaction was uniformly negative.’ He doesn’t mention the list of credible scientists who criticised the study here. Instead, he buries it in the following paragraph about David Tuller, saying he ‘collected harsh comments from physicians and scientists’. The rejection of PACE by many in the scientific community, and by the NICE review, deserves a standalone paragraph. It’s more important than the reaction from patient advocates. But Levinovitz’s framing suggests the opposite.

Also, ‘harsh comments’ makes these professional criticisms sound like unwarranted personal attacks. But one of Levinovitz’s examples is ‘blatant methodological lapses’. To me, this seems an objective and reasonable thing for a scientist to say about a study they consider flawed. It frames any scientific opposition to exercise or brain retraining as ill-intentioned, motivated by malice. For decades, proponents of these methods have repeatedly deployed this technique against patient-advocates with considerable success. But it’s weird to see them use it against eminent scientists like Dr Ron Davis for comments that are clearly not personal attacks. Earlier in the article, Levinovitz does not describe Dr Becca Kennedy’s accusation that ‘scientists and clinicians who champion biomedical explanations [rely] on shoddy, ambiguous research’ as a harsh comment.

Levinovitz writes that ‘Every mind-body researcher [he] talked to has dealt with intimidation tactics.’ And to be clear, I vehemently oppose such tactics in any context. But to evidence this, he refers to a Norwegian pediatric cardiologist who has studied mind-body interventions for ME as saying they are ‘monitored by specific patient groups’ who ‘do everything to try to, for instance, find formal flaws in our research project.’ Erm, OK? Finding ‘formal flaws’ in research doesn’t sound like intimidation to me. It sounds like the proper way to go about it.

Proponents of mind-body theories have long conflated acceptable and unacceptable forms of advocacy as a way of deflecting legitimate criticism. And Levinovitz does the same. Death threats, which are indefensible, are not the same as pointing out a study’s methodological flaws or even calling for a retraction. But they lump them all together as examples of harassment, intimidation, and abuse. To some in the mind-body field, it seems that there is no opposition, no criticism, from the IACC community they consider fair. That patients could not possibly understand ‘evidence-based’ science. That we should shut up, sit back in the patient’s chair, and accept what we’re given from people who do.

Concerning PEM, Levinovitz writes, ‘Advocates generally agree that people with this symptom should avoid exercise at all costs.’ This is an exaggeration. Advocates generally agree that patients should avoid exercise which exacerbates their symptoms, which is very different. But again, saying ‘at all costs’ makes advocates appear unreasoning and unserious, so he goes with it.

Levinovitz’s conclusion conflicts with the rest of his article. He writes multiple times that people with IACCs have long been dismissed and disbelieved, but overall his tone is unsympathetic towards advocates. But suddenly, in the closing paragraphs, he writes, ‘the fault does not lie with advocates but with our culture.’ He explains that psychological explanations for IACCs create real risks for patients, such as losing disability insurance and even custody of their children. ‘Huh?’ I thought as I read it. It’s a great point, but it wasn’t the impression I got from the rest of his piece.

In the final paragraph, he elaborates: ‘This is the real climate of fear that needs to be addressed. Fear of being labeled lazy and crazy. Fear of losing disability insurance. Fear of being blamed for your own suffering. Fear of having your children taken away.’ I agree. But as a general rule in writing, the ending should leave your central argument ringing in the readers’ ears. And as I understood it, this was not his central argument at all. He’d spent almost the entire preceding 7,000 words framing those who promote brain retraining and exercise as victims of patient advocates, not patients generally as victims of societal stigma. It felt very incoherent.

For an article that claims to contain the truth about Long Covid and frames any opposition to this ‘truth’ as lacking scientific backing or sound reasoning, Levinovitz’s article lacks objectivity and balance. Based on the ending, I’m going to guess that, late into his draft, he realised that some patients’ vehement opposition to exercise and brain retraining is rooted in more than some crazed, inexplicable anti-psychiatry bias (who’d have thought?) and rejigged his ending.

In future, I’d like to see more longreads framed around Levinovitz’s conclusion: the decades-long dismissal, disbelief, and mistreatment of people with IACCs by society and the medical profession, and the harm that their anti-psychiatry bias does to patients. That gets much closer to the root of the problem.