By David Tuller, DrPH
According to the headline of a recent article in The Sick Times, “less than 20% of Long COVID trials involving exercise even mention post-exertional malaise.” The news organization analyzed the registration records for Long COVID clinical trials and found that only a small minority assess or take into account post-exertional malaise (PEM), the defining characteristic of ME/CFS. Many people with Long COVID—the proportion is debated—experience PEM and qualify for ME/CFS diagnoses. For these patients, exercise programs, and especially those focused on gradually increasing activity levels, can be contra-indicated.
The author of the Sick Times piece, Toronto journalist Simon Spichak, has an MSc in neuroscience. He is the founder of a low-cost online therapy clinic for students called Resolvve and runs a newsletter about underreported health and disability issues in Canada. I recently spoke with him about the story.
Whether the percentage of long covid sufferers who have PEM is around 10% or is closer to 50%, it must surely represent an awful lot of people who could be harmed by the wrong advice or by not receiving the correct advice? If around 6% of people who contract covid go on to suffer with Long Covid and we take the lower 10% percentage for PEM, that would give us 0.6% of all those who got covid with PEM. Who didn’t get covid? Well some, like me, didn’t but, from what I’ve read, globally the number who did may be in the 800 million ballpark. Working with that, the number with PEM as a result (going on 10% of Long Covid sufferers getting PEM) could perhaps be close to 5 million people globally, rising to 20 million or more if the PEM rate is nearer to 50%. Whether the total with a PEM-type of Long Covid equates to perhaps a large city or a smallish country of people, aren’t we looking at an awful lot of people who deserve consideration and good biomedical research into finding out how and why they’re different from Long Covid sufferers for whom exercise isn’t such a problem?