By David Tuller, DrPH
Long Covid stories and commentaries seem to be everywhere—too many to keep track of! This week, The Wall Street Journal published an opinion piece about long Covid and ME/CFS that is breathtakingly ill-informed—and more importantly, just wrong. Beyond that, it showed remarkable disrespect for patients and their experiences.
(After this low for the WSJ opinion page, what’s next? A piece arguing that women with doctorates should be called “kiddo” rather than “Dr”? Oops!)
The author, Jeremy Devine, is a resident psychiatrist at McMaster University in Ontario, Canada. (In other words, he’s still in training–we all make stupid mistakes when we’re still in training, so perhaps in 20 years Devine will be able to use that excuse when trying to explain away this embarrassment.) Perhaps inexperience explains what might be Devine’s most striking misstep among many: When asserting that psychogenic explanations for ME/CFS represent “the prevailing view among medical practitioners,” he links to the PACE trial.
Is Devine aware of the controversy surrounding PACE? Does he not recognize that it has been effectively discredited, its recommendations dropped years ago by the US Centers for Disease Control and Prevention? Perhaps he did not read the open letter to The Lancet that I organized in 2018 about the PACE trial’s “unacceptable methodological lapses.” The letter was signed by more than 100 experts from Stanford, Columbia, Berkeley, Harvard, University College London, Queen Mary University of London, Johns Hopkins, Georgetown, Yale, etc.
PACE is a likely example of research misconduct, given that the investigators failed to disclose an incredibly salient detail: A significant minority of the sample–13%–met a key outcome threshold at baseline. This study is not something that a McMaster’s resident psychiatrist should be referencing as an example of anything except how not to conduct a clinical trial. (Come to think of it, the open letter to The Lancet has no signatories from McMaster University. Now maybe we know why.)
In fact, the animating trope of Devine’s piece could have been taken directly from the PACE playbook. It amounts to this: People with non-specific complaints who claim to have long Covid are experiencing psychogenic symptoms and/or have a mental illness. That message is delivered without nuance or caveats. (Devine does allow that some might be experiencing genuine physiological symptoms related to a co-morbidity or prior illness.)
Devine doesn’t use the phrase “mass hysteria,” but he might as well have. The thrust of his argument is that long Covid is essentially a crowd-sourced phenomenon—triggered and encouraged by over-the-top social media posts, inflammatory news coverage, and now research funding that will further lead to the “legitimizing” of a non-existent condition and “patient denial of mental illness.” Devine appears to dismiss out-of-hand the possibility that pathophysiological processes could be implicated in these widely reported post-Covid symptoms, including profound exhaustion, cognitive dysfunction, post-exertional malaise, and others. “Long Covid is largely an invention of vocal patient activist groups,” he declares.
Interestingly, Devine considers it a cause for suspicion that patients themselves were the ones who first studied, drew attention to and disseminated information about their own prolonged symptoms. He refers to this as “a highly unorthodox origin” for the category of phenomena we now refer to as long Covid. Yet this was a new pathogen, patients were the ones experiencing said symptoms, and the health care systems in the US and elsewhere were overwhelmed. It is unclear what route of identifying and tracking long Covid would have met Devine’s approval—none, I guess, since he does not believe in the phenomenon in the first place.
A misogynistic and anti-queer dog whistle
Devine undermines his case by noting that Body Politic, the online community that first surveyed those experiencing post-covid symptoms, “describes itself atop its website’s homepage as ‘a queer feminist wellness collective merging the personal and the political.’” Since Devine presents this Body Politic self-description without further comment, the implication is that an analysis by queers, feminists, and people who see links between their own health and societal inequities is inherently suspect and should not be taken seriously.
Perhaps that kind of appeal to “anti-woke” attitudes resonates with the general readership of the Wall Street Journal opinion page. Certainly the absence of a cogent explanation, or any explanation at all, as to why the sexual orientation and gender politics of those gathering data would automatically bias their findings suggests that Devine is deploying this meme not as a scientific argument but as a misogynistic and anti-queer dog whistle.
Devine makes much of the low numbers of people in the long Covid surveys who received positive viral tests, implying that including them in studies violates core scientific principles. He does not mention a complicating factor: As everyone knows, viral testing was scarce in the first months of the epidemic and patients with suspected or presumed Covid-19 were advised to stay home unless they urgently needed medical care. Devine is essentially presuming that those who are currently suffering but did not obtain a positive viral test are hypochondriacs—and the same goes as well for those who did obtain a positive viral test and are still suffering.
Devine decries the decision by the US Institutes of Health to devote more than $1 billion to studying long Covid as “a victory for pseudoscience.” He suggests that devoting biomedical research resources to long Covid represents “subjugation of scientific rigor to preconceived belief.” It is worth noting that there are few better examples of such “subjugation” than the PACE trial he apparently endorses as the “prevailing view” in the profession.
For what it’s worth, Devine’s opinions are not shared by Anthony Fauci, the nation’s leading infectious disease doctor, who was quoted about long Covid in today’s Los Angeles Times. Here’s the relevant section:
Fauci says it’s impossible to know how many are affected [with long Covid], why the virus doesn’t seem to be done with them or how long their symptoms could last…In the absence of lab tests that can diagnose the problem, “a lot of times people think it’s a psychological disorder,” Fauci said. “It’s not.” (Fauci’s record on ME/CFS stretching back to the 1980s is a different matter that has been documented in Hillary Johnson’s prodigiously reported 1996 book Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.)
So how does Devine know for sure what he knows for sure about long Covid? He draws—of course!–on parallels between long Covid and what he calls chronic fatigue syndrome. We learn from Devine that ME/CFS patients and others with unexplained symptoms “often vehemently reject a physician’s diagnosis that suggests an underlying mental-health issue, in part because of the stigma around mental illness and the false belief that psychologically generated symptoms aren’t “real.”’
The assertion that patients reject psychological and behavioral interventions because of the stigma around mental illness is a favorite rallying cry of the biopsychosocial ideological brigades. I suppose that could be happening in some cases. But Devine fails to note that patients often reject such a diagnosis because there is insufficient evidence for it beyond the doctor’s opinion–and doctors can be wrong, as we all know. If a doctor keeps insisting based on his/her/their own preconceived ideas about ME/CFS that a patient has a mental illness when they do not, it is not surprising that some respond “vehemently.”
The word “vehemently” is striking. I assume Devine uses it to create the impression that patients are not only irrational but also belligerent and aggressive when they reject wise clinical assessments from doctors like him. Unfortunately, he seems to have some things backwards. He also does not come across as a sympathetic listener. Perhaps Devine will mature with time and, as his psychiatric training progresses, learn to express himself with a greater sense of compassion and a less arrogant approach to patients’ concerns.
And let me say this clearly: Patients should reject the clinical judgment of any physician who reviews the history and conduct of the PACE trial and still endorses it–whether in an opinion piece in The Wall Street Journal, a medical consultation, or anywhere else.
27 responses to “Clueless Wall Street Journal Op-Ed Endorses PACE as the “Prevailing View” Among Docs”
I live in Hamilton. Recently, I have been going to many medical appointments in area hospitals. Every time I go, I bring one or more print-outs with me and ask the doctors/technicians to put them somewhere like the lunch room where anyone can read them. I always point out similarities with long Covid and encourage them to tell anyone they know who might have long Covid to rest and avoid going past their limits. I hope this will have a beneficial influence on someone.
clueless or vested interests’ influence at work?
Thank you. I was apoplectic when I read Devine’s piece – too angry to write anything coherent. This is just what we don’t need, but then it isn’t surprising the the psyche gang comes out just when funding and research efforts start to coalesce for the benefit of long-suffering ME/CFS and newly suffering longCovid patients. Perhaps Dr. Tompkins can wander down the figurative halls of Harvard and provide a bit of education.
We wrote a reply. We documented the illness in its entirierty as it evolved, without sharing it o social media. We were the only people to do so. At least 25 patients had to report a condition in order for it to get included in the catalogue.To eve suggest it is concocted in our heads and by patient groups (inc ref to body politic queer/feminist inferences) we find abhorrent, verging on misogenic and homophobic undertones. Moreover, statements like that of disbelief, of fabrication could well indeed, be damaging to patients. Sadly here in the UK the usual suspects are circulating webinars, forums, conferences where cbt/get is being promoted and now the 69 clinics funded by £10 million are, after 4 months, barely functional, inaccessible or where GPs simply can’t refer patients. So then, does this mean that it’s all in our heads, or, are we in fact, having the likes of Delvine and others from the bps brigade shutting doors in our faces, like they have done for decades in me/cfs? The bps has sadly now shifted its empire into long covid and I fear it is now being openly promoted in the US/Canada too. Then again I have heard how in Canada it will be patient-led and not go down the route the UK have taken, interestingly and perhaps this is the outcry in response. Similarly someone from here in the UK did a webinar in….Canada on me/cfs and long covid, changed to long covid only last minute. It was so poor and promoting get & insulting to me/cfs patients the NIH refused to print the script and refused to share the recording and apparently the guest was subsequently ‘replaced’. The reaction was to block anyone on twitter that had me/cfs in their bio. I find a professional who does that to clearly have a very biased attitude. They subsequently labelled the entire me community as ‘me activists’. Not long now then before some of us will be referenced as long covid activists. That same person is circulating here in UK and is senior on long haul committees. It makes me question why they are doing this. Here the GET clinics have just opened, and patients are frustrated that yet again, cbt/get seems to be in full operation. This is despite NICE dropping it from me/cfs as being of ‘low or very low quality’ and of being ‘harmful’ to patients. The long haul community need to be aware of the history. Delvine should retract the statement: it will ruin his career, and, ruin the lives of patients. History wont be kind to people holding such ignorant and misinformed views of a pandemic illness.
Thank you, David! It was distressing to read that horrible, incredibly misguided Opinion piece in the WSJ. Your swift, intelligent response is greatly appreciated by so many.
David, is it worth submitting a rebuttal to the WSJ? It galls me to think its readers will take this smug nonsense as some sort of professional last word on the topic. To those of us well-versed in ME/CFS history, Devine’s claims are offensive, outrageous, and transparently ignorant, but I fear long COVID sufferers and their families and physicians may take it as face value. You’re such a great writer and advocate. Please consider submitting your own opinion piece to the WSJ. (And thanks for all you already do!)
This tweet -https://twitter.com/VPrasadMDMPH/status/1374487172451987461 – was retweeted by Devine. So if I was to claim (I’m not) that Devine was mentally ill without meeting him or knowing anything about him, presumably that wouldn’t be counted as “ad hominem” because only low life people who stigmatize mental illness would see it as any sort of attack or insult? Is it ok to do that now? Can any psychiatrists or ethicists out there provide me with an answer?
Thank you David, for writing this response to the Devine article. Thoughts and feelings were ricocheting around my head after reading WSJ piece and in the end I settled on thinking that Devine is looking through a very narrow, misinformed lens and therefore has a very limited view. Apparently he is unaware of his level of ignorance and I suspect he may seriously regret having written this, immature outpouring, at some time in the future.
“In other words, he’s still in training–we all make stupid mistakes when we’re still in training, ,,”
Well yes I suppose we do, but few of us have our mistakes printed in one of the most influential broadsheets on the planet. So how did that happen when good journalism on both ME and Long Covid is sparse? Might we assume ‘The Establishment’, in its different forms depending on country, is at play in the decisions Editors make? I think we already know that this is so ..well we do as far as the UK is concerned, where editors can be leaned on by certain influential quangos and/ or individuals to toe a particular line. (The SMC would be one of the former. ) So has the increasingly powerful BPS juggernaut influenced the ability for this exceptionally minor player (yet to finish his training) to access the WSJ in order to get this fraudulent message to the masses I ponder? Or was it just Devine intervention?
Wrt the (probably very tongue in cheek) observation that Tuller has made regarding the naivety of youth, the lack of judgement by someone still in training, the same can’t apply to the rest of the old ‘dyed in the wool’ BPS fogeys whose names we have sadly come to know. Their excuse for bad practice, probably fraudulent junk science is what exactly? I’d love to know!
And that other perennial question I have about the BPS, many of whom are psychiatrists, as is Devine, is this:
i) people with ME (or Long Covid) are told that their illness is psychogenic (and let’s not beat about the bush… any mention of ‘their symptoms are real’ is just baloney, what they really mean is ‘you’re nuts’) …
ii) the BPS clearly hate anyone with ME ..that is about as obvious as the Blackpool Illuminations …
iii) ergo the BPS hate people who have a mental illness (in their eyes at least)…
iv) aren’t psychiatrists (who make up so much of the BPS ideology) supposed to care for and help people with mental illness?
How is it that the very profession catering for people with mental disease can treat what it regards as *its* patients with such global distain, nay hatred? The nonsense of this has always seemed so perverse, but even more so that the BPS get away with it and are even lauded for their great works. Do they treat those who have distinct and sensibly described ‘psychiatric diseases’ with this same distain? I don’t know, I just know that in the UK, whilst the IOP fannies around with its top down enforcement of the BPS model applied to people who have a biomedical disease, genuine psychiatric patients are being left to fend for themselves. CAMHS is falling apart at the seams with ludicrous waiting times for young people who might be suicidal. Most of those living rough are said to have mental illnesses. Why aren’t these issues being addressed with the same alacrity and intensity as the BPS apply to pwme or LC?
Those of us with ME have the utmost respect and compassion for anyone with a traditionally accepted psychiatric disease. There is no issue amongst any of my friends who also suffer with ME around ‘stigma’ and mental illness… none of us have a problem about psychiatric diagnoses. It is simply one of those logical fallacies that is trotted out ad infinitum by the BPS. Devine isn’t immune it seems. Plus as Tuller observes with regard to Devine, “He also does not come across as a sympathetic listener”… shouldn’t that be the ‘number one’ entry requirement for psychiatry? So all in all psychiatry seems, ironically, to be the very worst discipline to help psychiatric patients because the evidence would suggest they have no compassion for them at all. (Exceptions to this rule might apply). They are also completely surplus to requirements if we’re talking about a very serious, life affecting, life threatening, neuro-immune disease called ‘ME’.
It’s all so dystopian. And now the poor Long Covid people will find out just what it’s like to fall down the rabbit hole and land in a world which no longer marches to the beat of the drum that they had known hitherto. To mix more metaphors, in the words of Pink Floyd, ‘Welcome to the Machine’ .. and it’s grim and grubby and grimy ..
(I have used the initialism ‘BPS’ as shorthand for the Wessely School dogma that unfortunately pervades ME existence).
Once upon a time there was a fraud called Freud who sold the 20thc a pup. This pup grew, and grew, and grew, until it became a rabid, Cerberus-type beast with phospherant eyes. It went around barking up trees. They were always the wrong tree. People were terrified and someone said it had been bitten by a bat so a Park Ranger for the Society of Cruelty to Animals came along and inserted a microchip in it’s flesh whereupon it began chasing it’s own tail. Men thought the answer was to acquire letters after their name but the letters grew, and grew, and grew, until they tripped up over hem and bashed their brains. Women didn’t want to leave home but the doctors said that if they swallowed these red apple pills they would live happily ever after. The pills caused the women to suffer more pain. The birth rate plummeted and nobody told fairy stories anymore.
Meanwhile in the fastnesses of the Kalahari Desert the goddess, G!kunll’homdima, hid, and vowed vengeance on the human race for having eaten her pangolin.
Insurance Company Kickbacks are heavily involved when referring to CFS. There’s plenty of money for those willing to attach psycho babble to CFS especially if disability pensions are involved.
This illustrates another reason the PACE Study should be retracted: Had it been, any one who clicked through to it from Devine’s article would land on a web site with “RETRACTED” stamped in big red letters across each page.
A proper retraction might have given Devine a clue early on his educational career that the PACE Study was trash–unreliable at best, dangerous at worst. It is no basis for a considered opinion about any disease. And had he incorporated the PACE trash into his argument anyway, it would be a clue to his editorial readers that Devine either does not know what he is talking about and/or that he has conflicts of interest or hidden objectives in writing and publishing such an editorial.
Retract the PACE Study.
David, your patient advocacy is truly a bright spot in this pandemic. Thank you.
Just FYI, I sent this letter to the WSJ. Haven’t heard from them yet.
Letter to the Editor, The Wall Street Journal:
It’s always worrisome when words as ill-informed and misleading as those in “The Dubious Origins of Long Covid” appear in a place as prominent as the pages of this newspaper. It’s worrisome to me personally, as someone with Long Covid, that the author is so quick to dismiss as “psychologically generated” the symptoms that keep me bed-bound most days. But, I think I’d be just as bothered if the issue didn’t affect me so immediately.
I’d be bothered by the fact that, in dismissing a major survey that raised awareness of Long Covid, the author cites the fact that the organization initiating the survey (Body Politic) also speaks out on issues related to gender identity and feminism. The author seems to find that fact relevant to his argument. I don’t.
But that’s not the most bothersome aspect of his words. What’s most bothersome is that the author’s entire argument is based on certain limitations of this one survey, with his major concerns being related to the fact that the research is “patient-led.”
If this survey was the only compelling evidence documenting the reality of Long Covid, the author’s words might deserve a hearing. But, the strength of the Body Politic survey is that it sits alongside a wealth of other research on this scourge. In fact, the same day that your newspaper ran the misleading drivel in that column, Nature Medicine, published “Post-Acute Covid-19 Syndrome,” which provided a “comprehensive review of the current literature on post-acute Covid-19….” It’s a better read than the column you published. Do a word search. You won’t find the word dubious.
We need a “like” button on this comments page.
Good work, Michael!
Perhaps Jeremy Devine should read “How COVID-19 Affects the Brain”
Boldrini M, Canoll PD, Klein RS. How COVID-19 Affects the Brain. JAMA Psychiatry. Published online March 26, 2021. doi:10.1001/jamapsychiatry.2021.0500
Any more clues?
Dia duit. Sounds like an opinion of one psychiatrist who invalidates long-COVID and WSJ published it. Assuming the point of WSJ was to generate a rebuttal. Recall how competing opinions by epidemiologists left the public divided. Less opinion and more facts in journalism would be a mercy. Thanks for the blog. Helpful to non-academics.
When I saw that article I wrote to the wsj editor myself, for whatever good that might do, but my writing skills are limited. I’m very glad you’ve taken the time to write this. I will be resending my email to wsj with this link added and a suggestion that they speak to some actual experts and publish an accurate piece about it to try to offset the damage they’ve don’t by publishing such a biased, ill informed piece.
Again, thank you for writing this.
The science in this article is all over the place and extremely questionable.
*the first article not this one!
I think a lot of the resistance to both ME/CFS and Long Covid is actually about doctors being afraid of losing their power and prestige. These are patient groups that have openly questioned medicine and pointed out flaws that are really embarassing for medicine as a presumably evidence based science.
They’re afraid that their authority is being questioned, now that research databases are availiable to the general public. It’s a troubling development for physicians with a God Complex and a lack of respect for the patients lived experience. Do I actually have to start questioning my own assumptions now? Don’t they know that graduating medical school and getting a job as a doctor makes me an unfalliable beacon of wisdom and knowledge? A walking, talking manifestation of semi-divine omnipotence? How dare they question me?
I am in the UK, in the process of attending a Long Covid clinic at the Oxford hospitals. One good thing is that it is in the respiratory medicine section. So far I have had lung function tests done and have spoken via video link to a respiratory specialist. I was told they could find nothing physically wrong with me. (Lung function tests at 87% are not considered problematic.) All they can offer me is to retrain my breathing to help with my breathlessness. Next week I will speak to a physiotherapist. In a few weeks I will be given a date for a 6-week breathing and lullaby training with English National Opera. It all sounds interesting.
However, what worried me is that both of those Oxford sections (in the same department) sent me the exact same pre-assessment questionnaire to fill in. It consisted of seven different scales. The one that concerned me was the PHQ-9 questionnaire, which was obviously a depression one. I refused to answer it and wrote an essay instead. I was better at it the second time and stated that I had hunted via google and could not find anywhere that this scale had been validated with people with physical ailments. I saw one test with 6,000 respondents where only 59 had health issues. This questionnaire is obviously not fit for purpose when it comes to people who are already unwell.
For those who don’t know the scale, these are some of the questions, to be answered ‘Not at all’, ‘Several days’, ‘More than half the days’, ‘Nearly every day’ in reference to the last two weeks:
– Trouble falling or staying asleep or sleeping too much
– feeling tired or having little energy
– Trouble concentrating on things, such as reading the newspaper or watching TV
– Moving or speaking so slowly that other people could have noticed? Or the opposite – being so fidgety or restless that you have been moving around a lot more than usual
– Poor appetite or overeating
There were four other questions that are obviously about mood or depression. The five above could all have physical causes and be the symptoms of various health problems, including heart issues.
You can score a maximum of 3 points for each question. Between 5 and 9 scores you mild depression. Between 10 and 14 scores as moderate depression. I’m sure all of us with ME would come out that with a diagnosis of depression, even though these are fully recognised symptoms of ME.
It worries me that the Oxford Long Covid clinic might be preparing to correlate depression with Long Covid.
(David, I would be happy to talk with you further and to send you any information you want. For your interest, the other scales are:
FACIT Fatigue Scale (Version 4)
Visual Analogue Fatigue Rating
Work and Social Adjustment Scale
Your rebuttal, David, is perfect. Thank you.
The BPS folks are aging. Maybe the younger WSJ author is positioning himself to be among the next generation of BPS leaders.
This doctor hasn’t even completed his training. I have much more experience with Chronic Fatigue than him. I’ve had Chrinoic Fatigue for nearly 40 years. It occurred after an EBV infection. It was post-viral, just like the Covid patients. It is real. The medical community has been in denial of Chronic Fatigue since the big outbreak in 1983. Are we going to stand by again, as it denies the Covid related conditions as figments of peoples’ imaginations? I have often wondered how despite hundreds of studies determining it is a biological condition, doctors like this continue to argue it isn’t based solely on their opinion with no science behind it. I find it highly suspicious that a doctor with so little credentials and experience is given a platform in a major publication. I am starting to wonder as stated elsewhere in these comments, that their is either political or financial influence going on somewhere. This isn’t the first time I have heard this theory.
We need great legal minds! Is there a way to start filing some sort of class action law suits etc. against the so called Drs who are putting multimillions of our lives at risk by continuing to spread misinformation about exercising and also that this is a psychiatric disease? There’s got to be something we can do, even if a creative mind comes up with something that’s never been tried before or is completely out of the box thinking! Thank you for what you are doing!