Long Covid and ME/CFS

This weekend is the seventeenth anniversary of my ME/CFS onset. The skepticism and stigma were so great at the time that I waited nine years to out myself in a post at The Faculty Lounge. Things have improved in the intervening years, as the NIH, CDC, and most recently the British National Institute for Health and Care Excellence (NICE) have recognized ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) as a systemic biomedical illness. Even so, there remains a corps of revanchist psychiatrists, mostly in the UK, who continue to insist that ME/CFS symptoms are caused by "dysfunctional illness beliefs" and deconditioning, thus disastrously advising graded exercise therapy, which leads to debilitating crashes that only make the condition worse (as documented in a study by the U.S. Institutes of Medicine).

Now, in a new phenomenon, long covid sufferers are often facing the same medical gaslighting, as described by this column by the novelist Madeline Miller in today's Washington Post:

I reached out to doctors. One told me I was “deconditioned” and needed to exercise more. But my usual jog left me doubled over, and when I tried to lift weights, I ended up in the ER with chest pains and tachycardia. My tests were normal, which alarmed me further. How could they be normal? Every morning, I woke breathless, leaden, utterly depleted.

For me, one of the worst was post-exertional malaise (PEM), a Victorian-sounding name for a very real and debilitating condition in which exertion causes your body to crash. In my new post-covid life, exertion could include washing dishes, carrying my children, even just talking with too much animation. Whenever I exceeded my invisible allowance, I would pay for it with hours, or days, of migraines and misery.

Doctors looked at me askance. They offered me antidepressants and pointed anecdotes about their friends who’d just had covid and were running marathons again.

I didn’t say I’d love to be able to run. I didn’t say what really made me depressed was dragging myself to appointments to be patronized. I didn’t say that post-viral illness was nothing new, nor was PEM — which for decades had been documented by people with myalgic encephalomyelitis/chronic fatigue syndrome — so if they didn’t know what I was talking about, they should stop sneering and get caught up. I was too sick for that, and too worried.

Here is a recent essay I coauthored in Health Affairs about ME/CFS and long covid. We will publish an update later this month.