Trial By Error: A Few Things I’ve Read (or Heard) Lately About ME/CFS and Long Covid

By David Tuller, DrPH

Here are a few things I’ve recently read (or listened to).

FreakonomicsMD podcast

The Freakonomics brand is well-known in the US. I didn’t realize there was a Freakonomics, M.D. podcast until I listened to this recent half-hour episode. The podcast is hosted by Dr Bapu Jena, a physician and economist at Harvard Medical School. The sub-head of this particular edition pretty much sums up the focus of the informative and thoughtful discussion: ”Chronic fatigue syndrome looks remarkably similar to Long Covid, but has been ignored by the medical community. Could patients finally get some answers to their debilitating illness?”

The conversation includes interviews with Anthony Komaroff, a long-time ME/CFS expert at Harvard; Ronald Davis, the Stanford geneticist whose son’s illness triggered his search for answers to the illness; and Vicky Whittemore, the National Institutes of Health program officer who overseas funding in this domain. While most of the information will likely be familiar to those immersed in the issue, the podcast definitely provides a clear overview of a great deal of key background material.

One statement by Whittemore, in which she linked lower funding levels to a perceived shortage of researchers or quality research proposals in the field, did raise some questions among patients, as this tweet indicates. The statement also irritated Janet Dafoe, who tweeted that her husband—Ron Davis—has submitted 24 applications in this domain, but only one was funded.


Guardian essay on giving up hope

Keith Kahn-Harris, a long-time ME/CFS patient, is also a sociologist who signed Virology Blog’s 2018 open letter to The Lancet about the PACE trial’s “unacceptable methodological lapses.” I first touched base with him after reading a Guardian article he wrote a few years ago called “Denialism: what drives people to reject the truth.” In a bit of an own goal, Professor Michael Sharpe, a lead PACE trial investigator who believes everyone who challenges the PACE trial is engaged in denialism, promoted the article on social media—apparently not realizing that Kahn-Harris himself has ME/CFS.

Last week, The Guardian published another article by Kahn-Harris, with this provocative heading: “I gave up hope of a cure for my chronic condition. And it’s made me happier than ever before.” After many years of illness, noted the author, he “embraced [his] identity as a person with a disability…I am not on a treadmill of trying new treatments. Maybe one day there will be a cure, or maybe not. Giving up hope has given me back the capacity for joy.”

The article drew both praise and criticism on social media. Some appreciated Kahn-Harris’ efforts to cope, empathized with his approach, or expressed related feelings. However, given that his case of ME/CFS is relatively moderate, others felt his piece provided an unbalanced portrait of the illness or might be taken to imply that all patients could choose to do as he has.

The author himself acknowledged the limitations of his argument with these key concluding paragraphs, in which he also attempted to draw a larger societal conclusion from his account:

Yet here’s the kicker: hopelessness is a privilege. If my condition was just a bit more severe, my life would be miserable. If I wasn’t married and didn’t have a supportive family, I would be in penury. If I hadn’t chosen a career path that has some flexibility, I would be in a very difficult position.

Giving up hope requires a safety net. The challenge for our society is to enable others with chronic conditions and disabilities to give up hope without giving up everything else.


Psychiatrist Yochai Re’em on treating long Covid patients

In the spring of 2021, the Wall Street Journal published an odious opinion piece“The Dubious Origins of Long Covid”–penned by Jeremy Devine, a psychiatric resident at McMaster University in Ontario, Canada. Dr Devine’s misogynistic, homophobic screed blasted “long Covid” as a patient-invented condition that was actually a form of mental illness driven by what he portrayed as a collective wave of hysteria. Shortly afterwards, the Wall Street Journal published a response from another young psychiatrist, Yochai Re’em—himself a long Covid sufferer and a member of a patient-led research group derided and belittled by Dr Devine.

(I wrote about Dr Devine’s opinion piece here and posted a Q-and-A with Dr Re’em about his rebuttal here.)

Dr Re’em, who practices in New York, has recently written a touching follow-up piece in The Lancet. In his new article, he discusses his experiences working with long Covid patients in addressing some of the mental health concerns that afflict people with a poorly understood illness. Needless to say, Dr Re’em rejects the view that the long Covid phenomenon is largely a result of pandemic-related psychological and emotional distress rather than poorly understood pathophysiological processes .

Here’s a sample:

“Some [patients] told me they were hesitant to come to psychiatric treatment for fear their non-psychiatric symptoms will no longer be taken seriously. Indeed, this fear of dismissal is based on prior experiences they have had with other providers who have been quick to shoo them off, mistaking their anxiety and urgency for recovery as causative rather than a correlation, and tightly wrapping it up in a psychogenic bow.”

5 thoughts on “Trial By Error: A Few Things I’ve Read (or Heard) Lately About ME/CFS and Long Covid”

  1. Hope, like positive thinking, is probably much overrated, and in the UK may be verging on pointless against a backdrop of what looks to me like the legitimized neglect and abuse of patients with unexplained symptoms by the NHS. Expectation, though, is a different matter. British citizens should expect to receive equality of access to good NHS healthcare and for their conditions to get a fair slice of the action with regard to state-funded biomedical research. So give up on the dream of ever being well, if that’s what floats your boat, but, (if only for your own sense of self-worth), please don’t give up the fight against such rampant prejudice and discrimination. (There may be far more to worry about if/when members of your own family or support network find themselves in the same sorry situation, as I suspect is quite likely now since many UK doctors may well have been persuaded that a third to a half of their consultations may be related to medically unexplained symptoms/viewed as somatization.)

  2. James Foulger

    “mistaking their anxiety and urgency for recovery as causative rather than a correlation, and tightly wrapping it up in a psychogenic bow.” – a psychogenic bow or psychiatry’s noose that tightens with any struggle against the hold it has ?

  3. Having squandered most of our research funding for 3 decades on exercise and CBT studies, the latest research money-waster from psychosocial ME researchers is ACT – Acceptance and Commitment Therapy. Keith Kahn-Harris’s article plays right into that.

    The article can read as a diversion from the critical issue of the minute amounts of ME bioresearch funding compared with other disabling diseases, which is a fact most general public readers would not be aware of. Also acceptance and giving up hope is a placating diversion away from getting CBT/GET and other damaging psychosocial dross out of the NHS. From down here on the hard ground KKH seems to be in a bit of an ivory tower

  4. Most of these articles are way over my head. All I can say is ME/CFS IS REAL. I had a case of mono in 2020 around the same time as covid. My Dr told me to rest & that’s how I’ll get better. After a month I was no better. Lots of bloodwork & lots of missed time off work. Fast forward I’ve been diagnosed with CFS & actually I’m in another crash. Living with CFS is NOT LIVING. Im only existing & that’s a sad fact

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