By David Tuller, DrPH
On September 1st, The Atlantic published another excellent piece by Ed Yong, €œLong-haulers are fighting for their future.€ In exploring how this population has confronted widespread misunderstanding in the medical community, the article highlighted the links between the experiences of Long Covid and ME/CFS patients by focusing on the crucial symptom of post-exertional malaise. That led to discussion of the PACE trial, which investigated both graded exercise therapy and cognitive behavior therapy as ME/CFS treatments but was marred by methodological and ethical flaws. (The main results appeared in The Lancet in 2011.)
Here’s what Yong wrote:
€œFor year, such patients [with ME/CFS] were told to exercise (or get psychological therapy), in large part because of a now-discredited study called the PACE trial. The damaging influence of that trial has taken years to undo, the CDC [US Centers for Disease Control and Prevention] has removed recommendations for exercise therapy for ME/CFS, and other countries are updating their guidance, but several long-COVID clinics, seemingly unaware of this ongoing controversy, are now repeating the same mistake.€
Virology Blog published my 15,000-word investigation of the PACE trial in October, 2015. I grounded that investigation in the discoveries already made by very smart and often very ill patients. At some point after that, I began routinely referring to PACE as €œdiscredited.” At first, I would chuckle when I typed that. The description was largely aspirational. PACE had been exposed as a piece of crap, not to mention as an example of possible research misconduct or worse. I personally considered it “discredited.” But awareness of the trial’s godawfulness had not yet spread beyond the small group who followed these matters closely.
I sometimes felt like I was going insane because nothing seemed to break through, no matter how many times it was pointed out that participants in PACE could get worse yet be counted as having €œrecovered€ or gotten €œback to normal€ on key measures, the CBT/GET ideological brigades defended it. Lancet editor Richard Horton defended it. The distinguished Professor Sir Simon Wessely proclaimed it €œa thing of beauty.€ In the British medical establishment, belief in the validity and integrity of the PACE trial was dogma–a form of mass delusion.
Because of Long Covid, the PACE trial and its findings have finally come under greater public scrutiny. It is hard to express the thrill I felt when reading the words €œnow-discredited study€ rendered as a normative statement in The Atlantic. Even more so when I realized those words were linked to my initial Virology Blog investigation. It actually brought me close to tears.
On the other hand…
Earlier this year, I wrote about a breathtakingly ill-informed Wall Street Journal opinion piece by a psychiatric resident in Toronto called €œThe Dubious Origins of Long Covid.€ Within the last week, outlets in both the US and UK known for provocative commentary, The American Spectator and Spiked, respectively, published pieces expressing similar skepticism in equally or even more dismissive terms. In both cases, the headlines referred to Long Covid as a €œmyth€ , although the one atop the Spiked article at least included a question mark, to suggest that the question was not entirely settled. (That turned out to be a feint; the author apparently does consider the question settled.)
These two new denialist articles repeat the same kind of stupidities heard for decades from the medical experts who declared the devastating symptoms of ME/CFS to be caused by deconditioning– itself theorized as arising out of patients’ purported fear of engaging in activity. Among other factors, Spiked blames Long Covid on €œmiddle-class hypochondria.€ The American Spectator pegs depression as the ultimate cause of the reported symptoms. In sum, these articles represent the epitome of arrogance and ignorance.
I make an un-billed personal cameo in the American Spectator article–less touching than The Atlantic’s reference to my work. In commenting on PACE, the author writes: €œActivists were incensed at the PACE study, chief among them an AIDS activist who simply switched from one politicized disease to another. He and his fellows actually got the CDC [the US Centers for Disease Control and Prevention] to cave,it removed references to cognitive behavioral therapy and exercise therapy from its website.€
That link the author inserts goes to my UC Berkeley academic page. I should point out that I was a member of ACT-UP, the confrontational AIDS group, from 1986 to 1988, more than 30 years ago. I then moved from New York to San Francisco for a job as a newspaper reporter (when there were still jobs called “newspaper reporter”). That ended my turn as €œAIDS activist,€ although I have often written about HIV/AIDS in the decades since, as a journalist, public health academic, and gay man who came of age when many people I knew were dying.
I guess it makes some literal sense to maintain that I’ve €œsimply switched€ one “politicized disease” for another. But I don’t get the point. That I shouldn’t have protested bad AIDS policies in the 1980s? That I shouldn’t address current mistreatment of ME/CFS patients based on flawed research? Screw that! Besides, the CDC did not €œcave€ to anything but the reality that the treatments it promoted were based on poor science. Did I and many others point out to the CDC that this science was bad? Of course we did.
Yet another Long Covid article, this one written by a physician and published in The New Yorker, adopted a softer tone but came down on the skeptical side. (It appeared online on September 20th). In a tweet, the author referred to Long Covid as €œa syndrome that still exists somewhere between theory and anecdote.€ For those suffering for months with seriously disabling symptoms, long Covid is neither theoretical nor anecdotal. The article received appropriate push back on twitter, including from Emily Johnson, a journalist and disability media consultant who highlighted the author’s relevant-but-undisclosed professional interests in reducing medical services perceived as wasteful.
The author himself appeared to acknowledge some of the article’s shortcomings and to regret the impression it created among many readers, judging by a tweet following the criticism: €œMy goal in my article on long COVID was to describe the challenges of diagnosing a new medical condition, not to cast doubt on whether it exists. That long COVID exists, and that many people struggle with it, is incontrovertible. We should do all we can to listen and to help.€