By David Tuller, DrPH
A few prominent news articles have recently drawn welcome attention to the links and overlaps between ME/CFS and long Covid. One key overlap is the core ME/CFS symptom generally known as “post-exertional malaise” (PEM). This term is so embedded in conversations in the ME and ME/CFS worlds that it is easy to forget others outside that bubble have no idea what it is or what it means or how devastating the experience is for patients.
PEM has other names, although presumably each construct would identify a somewhat different sample, depending upon how they were operationalized. A more recent term, post-exertional symptom exacerbation (PESE), has been gaining currency, since many clinicians, scientists and patients believe it more accurately describes the phenomenon. The UK’s National Institute for Health and Care Excellence used this term in its 2021 guidelines for ME/CFS, and it is also being used in the long Covid literature. In 2015, the US Institute of Medicine (now the National Academy of Medicine) deployed the phrase “exertion intolerance,” which still appears here and there. The primer for the International Consensus Criteria for ME calls it post-exertional neuroimmune exhaustion.
Given the prominence of PEM (or its alternates) in debates around both long Covid and ME/CFS, it is helpful that well-written and informative pieces of journalism are now gently introducing the construct to larger audiences. Here are three I’ve seen in the last few weeks.
On October 17th, The San Francisco Chronicle (my employer from 1988-98) published a compelling and informative piece–“A long-hidden disease is pulled from the shadows by its cousin, long COVID,” by veteran reporter Nanette Asimov (a former colleague). Much of the story focused on Whitney Dafoe and his family; they live in Palo Alto, which is within The Chronicle’s northern California purview.
Asimov provided important medical and historical background, including a mention of the debunking of the PACE trial. And I was also pleased to see that the article included this passage: “Any activity, even thinking, can trigger symptoms and cause what long COVID and ME/CFS sufferers alike call a “crash.” Experts call it “post-exertional malaise.” For readers not previously immersed in ME/CFS, it was probably their first acquaintance with the phrase.
On October 27th, The New York Times published opinion writer Zeynep *Tufekci’s [*I originally misspelled this as Tufecki, here and below. I apologize for the error] observant and moving account of a recent protest mounted by ME/CFS patients for more research and treatment funding. The piece—called “Protestors So Ill, They Couldn’t Get Arrested”—effectively portrayed the symptom of PEM by tracking how patients who attended the march experienced disabling relapses during the following weeks. Here’s a key section:
“Over the next two weeks, many suffered a baffling hallmark of their illness: postexertional malaise or PEM, in which even minimal physical and cognitive effort can cause them to crash. It sharply restricts their already limited ability to do anything and intensifies their painful symptoms. Some long Covid patients also experience this…PEM may be one reason M.E./C.F.S., and even long Covid, has been dismissed so often as a serious condition by many doctors.”
The last sentence in that passage nails it. The idea that exertion or exercise, if it is possible, is always helpful is deeply engrained. The notion that it might be harmful for a subset of patients with a symptom so obscure that even doctors haven’t heard of it is highly counter-intuitive. Without simple medical tests that can document it–and the two-day CPET protocol is not a “simple medical test”–it is understandable that many physicians would be quick to dismiss patients’ complaints.
I would assume, and hope, that *Tufekci’s focus on PEM in such a prominent venue gave many struggling patients a jolt–a sense of having been seen and understood and recognized. Many are likely to be relieved to have a name to put to what their bodies are doing, and to learn that there’s an actual thing called PEM. That knowledge is key to accessing appropriate care.
Physicians themselves often don’t know anything about PEM or changing perspectives on ME/CFS. So it’s helpful that Yale Medical School’s website published an in-depth look at the science behind both long Covid and ME/CFS, including critical investigations taking place at the university. The Nov 1st article, written by science journalist Isabella Backman, was called “Will Long COVID Research Provide Answers for Poorly Understood Diseases Like ME/CFS?” It included this important section:
“A hallmark symptom of ME/CFS and now long COVID is post exertional malaise (PEM), which entails an oftentimes severe exacerbation of symptoms after cognitive or physical exertion, which can be delayed. For years, people with ME/CFS were incorrectly advised to do Graded Exercise Therapy (GET), which is no longer recommended. “It can be very harmful to make people with ME/CFS exercise, especially going beyond their energy windows,” says Pollack. “They are physiologically exercise-intolerant and have key dysfunctions in cellular energy production as well as multi-factorial reductions in cardiovascular and cerebral blood flow.” Research using CPET testing and recent molecular research have illuminated possible biomarkers for PEM in ME/CFS.”
The story featured patient advocate and playwright Rivka Solomon, who deserves enormous kudos for how much she has achieved over the years in her efforts to disseminate accurate and credible information to patients, clinicians, journalists and the public. She has pursued these goals through her persistent organizing, lobbying, networking, and speaking out as well as through her eloquent and passionate writing. (As a bonus, the story also featured Solomon’s mom, Bobbi Ausubel, herself a dedicated activist. “No mother should have to wait decades for a treatment to help their daughter,” Ausubel told the reporter.)
New York Magazine’s Stink-Bomb
After that nice run, it was a bit of a shock to read the ill-informed stink-bomb that New York Magazine dropped into the debate on Nov 4th. As with the earlier stories, the piece linked the two relevant conditions—the headline was “Has Long COVID always existed? The pandemic might not have spawned a new chronic illness but rebranded an old one.” The journalist, Jeff Wise, chose to paint both ME/CFS and long Covid as essentially psychogenic in origin, which sparked a bit of an uproar and significant push-back in online spaces.
Wise mentioned PEM but nonetheless presented and defended the case for CBT and GET—relying on the PACE trial as a core of his argument. In doing so, he cited my work and seriously misrepresented it. I’ve posted a twitter thread about it. More on this when I get to it.