Ed Yong, a science writer for the Atlantic, has a talent for getting to the heart of the matter. During the coronavirus pandemic, he’s often seemed a step or two ahead of his colleagues.
His trenchant reporting has landed him a bunch of awards: the Pulitzer Prize in explanatory journalism; the George Polk Award for science reporting; the Victor Cohn Prize for medical science reporting, the Neil and Susan Sheehan Award for investigative journalism; the John P. McGovern Award from the American Medical Writers’ Association; and the AAAS Kavli Science Journalism Award for in-depth reporting.
He’s also the author of two New York Times bestsellers—An Immense World, about the extraordinary sensory worlds of other animals; and I Contain Multitudes, about the partnerships between animals and microbes.
Back in July 2020, Yong was one of the first to report on long COVID and has consistently included ME/CFS in his reporting. In Sept. 2021 he reported that “One of the biggest misconceptions about long COVID is that it is entirely new… (and that) Long COVID shares traits with chronic illnesses including ME/CFS, fibromyalgia, mast cell activation syndrome (MCAS), and dysautonomia including postural tachycardia syndrome (POTS).”
Now he’s taken a big step forward with a major article on ME/CFS and long COVID, “Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases“, that highlights ME/CFS. (The ME/CFS article is the number two Atlantic article in popularity right now).
Yong writes that long COVID has “forced a reckoning” for ME/CFS in the medical world. Reckoning – which to my mind has almost biblical overtones – denotes a settling of accounts, a bill coming due. It often occurs when the two parties meet to hash things out but, in this case, the ME/CFS reckoning has been “forced” – basically rammed down an unwilling medical establishment’s throat – by long COVID.
Straight to the heart of the matter, Yong goes. For anyone who thinks long COVID is not largely ME/CFS, Yong reports, using citations, “Many cases of long COVID are effectively ME/CFS by another name.” If the ME/CFS medical community wasn’t already vastly outgunned, it seems like it’s on life support now. Noting that the ME/CFS Clinical Coalition’s website lists just 21 names, of whom at least three have retired, one is dead, and several others are aging, Yong writes:
“American ME/CFS patients may outnumber the population of 15 individual states, but ME/CFS specialists couldn’t fill a Major League Baseball roster.“
Yong then notes that, in some ways, things are actually temporarily getting worse not better. Faced with an onslaught of desperate long-COVID patients, Dr. Kaufman, for instance, is dropping some of his stable ME/CFS patients. With medical appointments getting shorter, it’s getting harder and harder for doctors to understand complex ME/CFS patients who often come backloaded with conditions (POTS, Ehlers Danlos syndrome, MCAS, etc.) that most doctors don’t know anything about.
Yes, progress has been made (Institute of Medicine Report, CDC drops GET, Mayo Clinic guidelines, increased physician awareness), but in the grand scheme of things, the situation is still “intolerable”.
Yong effectively laid out the state of ME/CFS but missed some opportunities as well. He got a subtle but important point wrong when he stated that the NIH committed $1.15 billion to study long COVID. It did no such thing. It would have helped readers understand the fix ME/CFS is in if Yong had informed them that NIH spent virtually nothing on long COVID until Congress gave it $1.15 billion and told it to spend it on long COVID.
Indeed, the NIH is still funding ME/CFS as if long COVID had never happened. Yes, long COVID has been a huge catalyst, but if the ME/CFS doctor community is small, the ME/CFS research community is just as small. Yong never asks how such a small research field is going to adequately test the numerous long-COVID findings that are sure to arise.
Yong’s report on RTHM – an exciting new long-COVID telehealth opportunity, being produced by Ryan Kellogg Ph.D., Jennifer Curtin MD, and Michael Snyder Ph.D., highlights the strange place the ME/CFS community finds itself in. Jennifer Curtin’s mother and brother had ME/CFS and she had it herself for 9 years, yet while RTHM promises to add ME/CFS, it will only see long-COVID patients now and does not yet allow people with ME/CFS to get on its waitlist.
The ME/CFS community is indeed in a strange place. Enormous amounts of resources are flowing to long COVID (yah!), yet the ME/CFS research budget remains stagnant (boo!). Congress gave the NIH $1.15 billion to research long COVID, but the NIH is not allowing any ME/CFS patients in its long-COVID studies. Long-COVID clinics are opening up everywhere, but Yong couldn’t point to one that was treating ME/CFS patients, and some people with ME/CFS are having a harder time seeing the few doctors they have. An exciting telehealth opportunity opens up – only for people with long COVID.
Ultimately, of course, the future bodes well for ME/CFS: virtually every study published seems to further solidify the connection between ME/CFS and long COVID, and RTHM is expected to open its doors to ME/CFS patients in December. Dr. Bateman hopes that in a couple of years 100 times more physicians will have the knowledge they need to provide support for people with ME/CFS.
But is a “reckoning” for ME/CFS actually taking place? Yong’s article presses the case – the many ME/CFS patients, the few ME/CFS experts, the many ignorant doctors, the low research funding – that a reckoning needs to happen. It’s the first article I’ve seen to tie that to the long-COVID pandemic and is very welcome.
It’s clear, though, that reckoning regarding ME/CFS hasn’t happened – not yet. A reckoning requires that past due bills be acknowledged and made good – leaving all parties satisfied.
While ME/CFS should benefit immensely from the attention to long COVID, a true reckoning will require ME/CFS-specific actions are taken – ME/CFS being part of the medical curriculum, major outreach efforts be taken to inform doctors, major increases in ME/CFS research funding, and funding for clinical trials. These are logical outcomes one would think would flow naturally from a huge post-infectious disease pandemic, but none has happened – yet.
Hopefully, Yong’s excellent article will help spark the long overdue reckoning with the medical establishment the ME/CFS community has been waiting for.