What the Wired article got right

Hello everyone. I have returned from my travels in Latin America. Aside from having lots of fun, I’ve had plenty of time to think and have a much clearer idea of what I want from life and how to get there. So I’m feeling positive.

As most readers will know, on June 1 Wired magazine published an article titled, ‘The Painful Truth About Long Covid’ by Alan Levinovitz. It promoted brain retraining as a treatment, argued we need more exercise studies, and claimed patients are silencing those who share the author’s views. I’ve been taking a break from everything during my trip, so I only read it the other day. As researchers and advocates have already posted lengthy critiques, I’m going to do something a bit different and share what I like about it. I will, however, post a critique in my next blog.

Early on, Levinovitz describes the reality of very severe ME. He shares the story of a 37-year-old man ‘lying motionless and mute in a darkened bedroom for months, pallid and emaciated, unclipped nails like claws, sucking pureed food from a syringe, dependent on a bedpan.’ I was glad to see this depicted in a widely read magazine. If there’s one thing about ME that I wish the general public knew, it’s how the most severely affected live. It’s unimaginably awful, yet few outside our community know that very severe ME patients exist. To improve their care, we need that to change. More public awareness of very severe ME also benefits mildly and moderately affected patients, because it can persuade some members of the public who are otherwise disbelieving that it is a real and serious condition. ‘Well, no one would choose that,’ they’re forced to agree.

Levinovitz also acknowledges that ‘People with post-acute infection conditions are routinely traumatized by medical professionals and the general public.’ Similar pieces have somehow managed to entirely ignore the 40+ years of disbelief, dismissal, and mistreatment that people with infection-associated chronic conditions (IACCs) have endured. So this is a significant improvement.

In his conclusion, Levinovitz states that ‘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. This marked a weird shift in tone, because until then, I’d felt he was arguing that the fault definitely lay with advocates. Still, it was his most pertinent point, and one that almost everyone who criticises patients’ opposition to psychological explanations misses or ignores. His piece would have been stronger if he’d worked this point into its body, rather than popping it in at the end.

Anti-psychiatry bias exists throughout society. When people think IACCs are psychological, they view them as something we could overcome if we really wanted to. People say to us, ‘Surely you can’t be that ill’, ‘Surely you can manage that on your own’, or simply, ‘Have you tried?’ This prejudice also exists within the medical profession. A doctor who thinks you’re making it up or exaggerating is not going to say that. They will probably default to diagnosing you with depression or anxiety. So it’s no surprise that people with IACCs have come to see these diagnoses not just as inaccurate, but dismissive and disbelieving.

I find it strange that those who accuse the IACC community of anti-psychiatry bias never mention this. They are only concerned with the bias they perceive within our community, and not that which exists outside of it, even though this harms people with IACCs every day.

Finally, I cautiously agree with Levonvitz on some counts. I’m not entirely against brain retraining or nervous system-based approaches to aid with recovery for IACCs. They’re unproven, often expensive, routinely oversold, and can lead to patient-blaming. But they seem to help some. Those who benefit should be able to share their experiences without being attacked (although patients have legitimate concerns about this, as brilliantly explained in Naomi Whittingham’s The Trouble with Recovery Stories). Psychological illnesses are as real as any other, and labelling a condition psychological does not automatically equate to dismissal. We should drop the term ‘all in the mind’ altogether, as it stigmatises people with mental health conditions.

In some ways, Levinovitz’s article is better than past pieces which promote brain retraining and/or criticise the advocacy community. Admittedly, the bar was low because past pieces have been so biased and unprobing. But I thought it was worth highlighting its redeeming features nonetheless.

In my next post, I’ll explore some flaws in the piece.