By David Tuller, DrPH
Media watchdog covers how major news articles have psychologized Long Covid
The organization Fairness & Accuracy in Reporting (FAIR), based in New York City, is a progressive news watchdog focused on exposing bias and censorship. FAIR recently published an article called “Media Won’t Stop Psychologizing Long Covid,” by writer and investigative journalist Justine Barron, who often covers disability-related issues. Barron’s article highlighted the trend of high-profile stories in major outlets that question whether Long Covid is really a biomedical disorder and promote so-called “biopsychosocial” interventions.
The immediate prompt for FAIR’s coverage was the most recent of these articles, published on June 1st by Wired. The author, a professor of religion at James Madison University in Virginia, had previously opined on social media that 60-80% of Long Covid cases were “psychogenic.” In the 7,600-word Wired opus, he suggested that body-mind treatments could cure the illness and that argued that angry, anti-scientific patients were blocking research progress. The piece elicited a fierce backlash—which the author smugly interpreted as confirmation of his thesis rather than as evidence that he’d written a load of crap. (I critiqued the article here and here.)
Previous iterations of this general argument had appeared over the last few years in The New Republic, New York Magazine, and Slate, among other publications. The FAIR article summed them up nicely here:
“To varying degrees, articles that psychologize Long Covid tend to acknowledge that the physical symptoms experienced by patients are real, just unlikely to be caused by the Covid virus or any other biological origin. They often point to a vague mind-body paradigm as an explanation, but one in which the mind controls the body far more than the reverse. Overall, these articles emphasize that patients would benefit more from mental health and/or social service solutions than research and medicine….These articles exploit the fact that Long Covid is a misunderstood and heterogenous illness to make it seem unintelligible and impossible.”
FAIR addresses each of the articles in turn–as critics did at the time they were published. That doesn’t mean these types of pieces won’t keep popping up. But it’s good to know they’ve drawn attention and are receiving appropriate pushback.
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German psychiatrists push back against the “biopsychosocial” framework
As the Wired controversy makes clear, the debate over the nature of Long Covid, ME/CFS and related illnesses remains unsettled. A German psychiatry journal, Psychiatric Practice, recently weighed in on the issue with a provocative essay called “What is the Role of “the Psyche”? Long COVID and ME/CFS as Test Cases for Evidence-Based and Patient-Centered Psychiatry and Psychotherapy.”
The full article, written by a team from the University of Leipzig’s Clinic and Polyclinic for Psychiatry and Psychotherapy, was initially published only in German; it has now been formally translated into English. Cogent and well-reasoned, it is a robust response to efforts to frame these complex conditions as psychological or psychiatric disorders. The authors are not anti-psychiatry. But they’re against how it’s been used in this domain of medicine. *(In this paragraph, I initially indicated that the co-authors were psychiatrists, but that was an error–only the lead author is.)
The abstract clearly lays out the argument:
“The role of psychological factors in the development and course of Long Covid (LC) and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) remains a subject of controversial debate. We argue that psychologizing LC and ME/CFS carries significant risks: it leads to potentially harmful therapies, invalidates the patients’ experience of illness, hinders effective interventions such as pacing, diverts focus from necessary physical diagnostics and treatment, disadvantages patients in medical assessments, and places a considerable additional burden on the families of affected children or other relatives. We show that many of the arguments presented for a psychological contribution are nonspecific or insufficiently supported by empirical evidence. Our essay therefore advocates for extreme caution in attributing psychological factors to these conditions, in the interest of a specific, evidence-based, and patient-centered psychiatry and psychotherapy.”
The entire piece is well worth a read. It offers a satisfying counter-push to the dishonest spin emanating from the likes of Wired.
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One year on, has anything happened with the UK’s “delivery plan” for ME/CFS?
Last July, health officials in the UK released a much-ballyhooed so-called “delivery plan” for addressing ME/CFS. The plan received generally poor reviews from the patient community, with the general sense that it offered lots of words but not much of substance.
One year on, The Sick Times racently posted an account from Nick Benton, a freelance writer in Stockport, England. (He has had ME since 2020 and writes about it on his Substack, The Personal ME.) His update—nothing much has changed—is sobering. Here’s the opening:
“July marks the first anniversary of the publication of the U.K. government’s delivery plan, outlining how it promises to better serve people with myalgic encephalomyelitis (ME). Sadly, it is not one to celebrate. So far, the plan has failed to meaningfully improve care, research, or professional understanding of the disease. It reveals that only an avalanche of political support will force real change for people with ME.
It’s no surprise that the ME community greeted the final delivery plan (FDP) with dismay. I’ve had cognitive dysfunction from ME for over five years, so reading often feels like driving a car with the handbrake on. But synthesizing the FDP was like trying to do so uphill. The actionable commitments — those with funding, timelines, and accountability attached — are few. And to make it worse, they are buried within a sea of vague, nonbinding pledges, broader government policy actions, and hollow acknowledgments of patient experiences.”
Benton’s full essay is here, under the headline: “The U.K.’s plan for ME has failed us. Members of parliament must step up.”
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As the FAIR article indicated, there’s a tendency now for doctors to acknowledge unexplained physical symptoms like Long COVID symptoms as real while at the same time putting them down to mind-body dysfunction.
It’s one thing for doctors to refuse appropriate investigations, medical or surgical interventions and/or biomedical research if they believe that the patient with unexplained symptoms isn’t suffering to any significant degree, as doctors were taught in the past when the emphasis was on the patient malingering or exaggerating their symptoms for secondary gain. (Those who taught that stuff should take most of the blame for all misdiagnoses, delayed diagnoses and biopsychosocial harm caused by their faulty teaching.) It’s quite another for them to do the same when they genuinely believe and acknowledge that the symptoms are ‘real’ and the patient is in a bad way. That smacks of medical sadism to me and as a new low for medicine with doctors on its frontline abandoning their ethical drive to help people in real need. And I think it shifts where the blame for harms should lie to include those medics too. While some doctors may understand the sympathetic ‘real’ approach as a convenient line to lull their supposedly somatizing patients into a false sense of security and make their jobs less stressful, others will no doubt sop up what they’re taught and (correctly) believe that their patients’ symptoms (of supposed mind-body/psychogenic origin) are real, can be severe and that what the patient reports must be believed. To continue to teach doctors to withhold potentially helpful biomedical investigations and treatments from these patients is, in my view, to teach them to act sadistically. It leads to them conveying messages to patients that perhaps go something like this:
“Yes, we believe you are really suffering, truly we do, but we’re not going to help you medically or surgically because you need to help yourself. We understand that you’re in agony/dire circumstances and your life is falling/has fallen apart but you really need to come to terms with your sad situation and engage with our self-help programmes. We’re not bothered if you can’t work or have no quality of life in the interim. You MUST come around to our way of thinking and submit to our management plan (CBT and physio) or you really only have yourself to blame.”
Why would a patient trust any doctor that treated them like that? Why would they not view them as sadistic and loathe them and the ground they walk on?
It’s striking that medics who’ve gone down that route have refused to apologize even when it was clear that their illness beliefs were plain wrong and that their inaction had caused considerable biopsychosocial harm to the patient. That didn’t seem to matter to them. The primary driver would seem to be reducing the use of precious healthcare resources and cutting costs.
It looks to me like these patients are still being regarded by doctors and medicine as the undeserving, despite the acknowledgement (genuine or otherwise) of their very real symptoms.
“the debate over the nature of Long Covid, ME/CFS and related illnesses remains unsettled.” – David
Yep, the long and the short of it leads in many directions, both in long time and short time (Human DNA Found In 2-3 Mya eDNA?).
Long is only one type of time.
Einstein was asked “Why time?” … he replied “The only reason for time is so that everything doesn’t happen at once.”
In relation to the UK’s “delivery plan” for ME/CFS:
Let’s hope that our forthcoming PM’s determination to counter the trickle-down economics that has rewarded the few and crushed the many extends to health economics too and that he recognizes that neoliberalism* has infiltrated medicine itself via a warped biopsychosocial model that inflicts appalling levels of biopsychosocial harm on vast numbers number of patients.
* I’d suggest that neoliberalism in UK healthcare is pretty well exemplified by this video
-https://www.youtube.com/watch?v=DqDTAHUMnq4 where disease is relegated to being simply a ‘minority sport’, and the majority of illnesses are put down to psychosomatic illness. This appears straight out of the neoliberal playbook to me. The individual is seen as psychologically or behaviourally dysfunctional and society/government/healthcare systems have little responsibility towards them other than to point them in the direction of cheap physio-and psycho-therapy with the onus placed on the individual to engage with those therapies or suffer the consequences of their laziness or obstinacy. How neoliberally convenient!
To my mind, proponents of this model that minimizes disease have had their run in the UK and it looks like they’ve been found wanting…..or dysfunctional, one might say. Their model, for which the management of ME/CFS was considered key, has seemingly failed to deliver and it appears to me that both the UK public and the UK economy are suffering greatly as a result.
If you persuade doctors that up to half of secondary care referrals are due to mental health or ‘mind-body’ problems, and that these patients are a terrible waste of valuable NHS resources plus an iatrogenic risk to themselves, then an awful lot of patients may not be given the physical care that they need. Instead they may receive inappropriate psychological/psychiatric labels and care or even be put on inappropriate psychiatric drugs that cause them harm. Is it really any wonder then that so many people in the UK are now economically inactive if they’re being denied the medical/surgical care that they need?
UK politicians keep talking about getting the large number of economically inactive people with apparent mild anxiety and depression back to work but what if a sizeable proportion of those people are actually physically ill patients who’ve been cast aside by our NHS via a revised hysteria dogma, who’ve been labelled with mental health problems instead and diverted into psychological/psychiatric care to cut NHS physical healthcare costs and help pay for the NHS’s IAPT/’Talking Therapies’ psychotherapy programme (for those who do have mild anxiety and depression)?
The NHS’s Talking Therapies programme (previously known as Improving Access to Psychological Therapies or IAPT) has been going for the last 20 or so years. The theory was that a lot of physical illness was due to or worsened by poor mental health so treating mental health problems via a nationwide psychological therapy programme would lead to a reduction in physical health spending that would pay for the service to run. People would be helped all round and would stay in work. Everyone would benefit and be happy :-). But with the well documented economically damaging rise in economic inactivity caused by anxiety and depression, isn’t it inarguable now that this model has failed, and failed pretty badly? The key question then should be – which part of it has failed? Is it the therapy for those with milder mental health issues like anxiety and depression that was supposed to keep them in work that’s failed? Or is it the therapy for people with medically unexplained symptoms (MUS- including ME/CFS) that were attributed to mental health issues and recorded as such? Could it be that the programme’s therapists were simply unable to help their MUS clients to stay in or return to work because their problems were primarily physical and not psychological as purported? Could we now have large numbers of people wrongly labelled with mental health problems (or suffering anxiety and depression as a result of medical neglect of physical problems) but with a Government that has no idea that these people are in fact physically ill patients who’ve been cast aside by our NHS via a revised hysteria dogma and cost-cutting strategy?
I think it’s important that our incoming PM is aware of and considers these things. Plans are apparently afoot to put mental heath support into or closer to the workplace to help get people with anxiety or depression into work and/or to keep them there. That might help if they are indeed struggling mentally but if they’re struggling physically but their physical problems have been psychologized by our NHS then it’s not likely to help much at all and public money could be wasted. I think it’s high time that our politicians media woke up to what’s been going on in medicine. When Carol Monaghan (then an SNP MP) led the PACE Trial debate in Westminster Hall in February 2018 (-https://hansard.parliament.uk/commons/2018-02-20/debates/990746c7-9010-4566-940d-249f5026ff73/pacetrialpeoplewithme?__cf_chl_f_tk=PE06N_Kqlt.UccGjWRvMb_bpvUULGRcUlcrvFayom88-1782807889-1.0.1.1-EFkD0wUgdRwBCVXfFK10ex7fhdE4.KXvhTX0iwRxM7s), that should have been their wake-up call with regards to the wider implications for UK medicine. It appears that ME/CFS has long been viewed as the management blueprint for the wider medically unexplained symptoms (MUS) project (-https://pubmed.ncbi.nlm.nih.gov/9218987/ and -https://www.england.nhs.uk/north-west/wp-content/uploads/sites/48/2019/04/IAPT-LTC-_Full_Implementation_Guidance.pdf. )
I’d say that an “avalanche of political support” is needed not only for people with ME but also in relation to a much wider section of the population that has suffered greatly from the same MUS cost-cutting project and that is struggling to function and work because the NHS is no longer adequately addressing the public’s physical healthcare needs.
CT: The BPS crowd were part-funded by the DWP and Unum (American Insurance company), so yes, I think that’s exactly why this got started. See Mo Stewart’s earlier work.
Thanks Jules. I’m aware of the history but it’s important to raise it for those who might not be.