Another Excellent Read on Long Covid, ME/CFS and Medically Unexplained Symptoms

By David Tuller, DrPH

In a post earlier this week, I noted some differences in the tenor of the debate over Long Covid in the US and UK. Yesterday, another excellent and in-depth piece on the issues appeared on the domestic front, this time in VICE. The author, Alan Levinovitz, is associate professor of religious studies at James Madison University in Virginia. (School motto, according to Wikipedia: “Knowledge is Liberty.”) Besides religion, Levinovitz writes on a lot of other interesting topics, like science and belief systems and how they intersect. Last year, he published Natural: How Faith in Nature’s Goodness Leads to Harmful Fads, Unjust Laws and Flawed Science. (It’s a good book.)

When the VICE article–“The Medical System Should Have Been Prepared for Long COVID”–popped up on my screen, it had slipped my mind that Levinovitz had contacted me some months ago. I still don’t recall our conversation in great detail, except that he seemed smart and engaged and appeared to be taking ME/CFS and the possible links to Long Covid seriously.

Well, I’m really glad I talked with him. He’s done his research. January’s New York Times Magazine article and other recent pieces explored some of the complicated overlaps between ME/CFS and Long Covid. Now Levinovitz has taken the matter a step further, asking why we don’t know more about post-viral illness in general. His answer, in part, is the long-standing neglect of ME/CFS. This is not news to those involved in the issue. But it is gratifying that a sharp outside observer has weighed the available information and come to the same conclusion.

I sent Levinovitz a message yesterday asking him what drew his interest in covering the issue. Here’s what he wrote:

 I was drawn to the topic because I’ve been interested in the intersection of medicine and belief for a long time, especially psychogenic illness, mass hysteria, placebo and nocebo effects. When I saw what was happening with long Covid it immediately connected to these interests, and I saw a reflexive tendency to classify it as psychogenic.

So then I became curious: Is it psychogenic? And if it were, how would we know? That second question, it turned out, was very hard to answer, in part because the medical community doesn’t have a good way of answering it. Vice was willing to give me the space I needed to unpack these really complicated issues in a way that did them justice.

When I read thoughtful stories like the one in VICE, I don’t expect to agree with everything. I can usually find a point I might have expressed differently or a quote that doesn’t resonate with me, or maybe I would have interviewed those folks instead of these ones. But that’s ok. I’m inside the issue so of course I have strong ideas about how it could be covered. From my perspective, the fact that people not immersed in the field are now curious and are taking the time to poke around and ask questions and write probing articles is itself a sign of enormous change since I began my quixotic project a few years ago.

For his piece, Levinovitz talked to both Jen Brea and Julie Rehmeyer, among others, about the experience of having a poorly understood illness. (Julie, did you refer him to me? I can’t remember now. If so, thanks!) He rightly credits Hillary Johnson’s Osler’s Web, a prodigious feat of reporting, as the “definitive” work about developments in the 1980s and 1990s. He mentions Johnson’s account of Anthony Fauci’s past unwillingness to take ME/CFS seriously—a surprise to many who have only been aware of Fauci as a sane voice amidst the Trump insanity.

What’s more, Levinovitz highlights the PACE trial, the significance of which is often overlooked in US coverage of ME/CFS. I have been trying to discredit PACE since Virology Blog posted my initial investigation more than five years ago, so this lovely passage made my day:

“Despite letters and commentaries (and even scientific studies) the PACE trial remained the gold standard for treatment, endorsed by every major medical organization. Finally, in 2015, the journalist and public health expert David Tuller published a 15,000-word critique of the study, and the tide began to turn.”

(As I have made clear, my work piggy-backed on the devastating critiques of PACE that had already been disseminated by patients and advocates before I wrote anything about it, and the heroic Alem Matthees pursued the tribunal case that liberated the trial data. The discrediting of PACE has been a collective effort.)


Levinovitz also spoke with bioethicist Diane O’Leary, who has written extensively on so-called “medically unexplained symptoms,” or MUS. The attention to MUS is a welcome development because the term’s problematic implications are little recognized. As I’ve noted previously, the phrase MUS is neutral on its face—as in, “at the present time, these symptoms are medically unexplained.” But champions of the MUS construct often appear to interpret it to mean “medically unexplainable symptoms”—as if the production of all new medical knowledge has ceased. That interpretation has vastly different implications for treatment, research and policy.

(Unlike in the US, the MUS approach is deeply embedded in the UK’s National Health System. . The NHS’ Improving Access to Psychological Therapies program lumps what it refers to as CFS/ME and irritable bowel syndrome, among other conditions, into the MUS category. The IAPT program shunts these patients off to receive CBT and related interventions.)

Levinovitz also communicated with Professor Jon Stone, a neurologist at the University of Edinburgh and an expert in the category called functional neurological disorders, essentially a large subset of MUS. The article included Professor Stone’s thoughts on the thorny issue of “psychogenic non-epileptic seizures.” Yet it did not include a discussion of CODES, the high-profile study of a course of cognitive behavior therapy as a treatment for these seizures–rechristened “dissociative seizures” to reduce the stigma involved with telling people they have a psychogenic disorder. (I have blogged about CODES here, here and here.)

Professor Stone was a CODES co-investigator, as was Professor Trudie Chalder, a cognitive behavior therapy expert at King’s College London and one of the lead investigators of the discredited PACE trial. The main findings were published last year in Lancet Psychiatry, a high-impact journal. With more than 350 participants, CODES was a major test of the biopsychosocial approach to FNDs. The primary outcome of the study was the number of dissociative seizures per month. The CBT was designed specifically to address whatever mechanisms were presumed to be driving these seizures.

Unfortunately for the investigators’ theoretical framework, those who did not receive the specialized seizure-reduction CBT had a greater reduction in seizures at the end of the study than those who did receive the specialized seizure-reduction CBT, although the difference was not statistically significant. In addressing these embarrassing and presumably unexpected results, Chalder, Stone and their colleagues did not conclude that the CBT intervention had failed. Instead, they argued that seizure reduction was likely not the optimal primary outcome after all–even though they had invested significant time and money in the notion that it was. After rejecting the appropriateness of their own primary outcome, they touted some very modest benefits in a few self-reported and subjective secondary outcomes.

King’s College London issued a press release in which Professor Chalder hailed the “effectiveness” of the intervention without mentioning its lack of effectiveness for the primary and most important outcome of seizure reduction. The release itself presented the study as a success but also did not mention the null results for the primary and most important outcome of seizure reduction. Professor Stone was quoted as well in the KCL release; presumably he read it at some point. Perhaps neither he nor Professor Chalder thought it was important for the university to disclose the null results for the primary and most important outcome in disseminating information about the study to the media.

But I digress. Levinovitz ends his VICE piece with a call for doctors to be willing to say “I don’t know.” That call is definitely on point. In a 2020 commentary about MUS in Medical Humanities, a BMJ journal, Northwestern University law professor Steven Lubet and I ended with a similar appeal: “Patients would be better served by greater humility accompanied by an understanding that medical categories are always provisional and therefore subject to change with advances in research.”

Alan Levinovitz has navigated these complex cross-currents with intelligence and empathy and nuance. I am delighted he took this on and gave the matter the attention it deserves.




13 responses to “Another Excellent Read on Long Covid, ME/CFS and Medically Unexplained Symptoms”

  1. Lady Shambles Avatar
    Lady Shambles

    All very good, but there’s so much more to be done with respect to exposing MUS and FND for what they are. Patients, including/especially those with ME, will continue to suffer until these constructs are dismantled for good.

    – but it would be so much better coming from you, perhaps together with something about being gaslighted by neurologists?

    Wrt the latter I saw an interesting conversation only yesterday which involved a neurologist refusing a diagnostic test for a situation which, in the gold standard of ‘the SFPN handbook’ unquestionably warranted it (I’m not referring to any specific handbook but I am referring to top notch observations from a Neuroscientist at one of the US Ivy League universities). In place of the procedure which could have given a decisive, binary, result… yes you have SFPN or no you don’t, the patient was told that they required CBT. The neurologist in question has been touting CBT increasingly, it would appear, over the last year. Maybe it’s not co-incidence that he has also, recently, co-authored papers with Trudie Chalder? Why would a consultant neurologist throw away the textbook and start behaving in such a cavalier manner? And what is to become of neurology patients if sensible tests which would be appropriate to their presentation are refused? It’s almost as if some (many/ most?) neurologists want to keep as far away as possible from tests which can disprove a psychogenic explanation. This is all getting very murky. This really does call for some very sharp-witted investigation before all neurology patients who aren’t easy to deal with (in the treatment sense) are shunted down the CBT route. Many of us with ME will have presentations that require interface with neurologists so this isn’t an issue outside our purview.

    I also, only 2 days ago, read a very self-interested piece by a doctor directed at GPs who have such a terrible time (poor loves) with their ‘heart-sink’ patients. Have any of them considered (as neatly put by one commenter ) that the experience of almost all of us with ME will have been to encounter heart-sink *doctors* as a regular occurrence? What do we feel about that? I don’t think anyone cares what we think about that. There is so much to unpack… but people with ME are too ill to do it alone.

  2. CT Avatar

    The field of ‘functional neurological disorders’ / FND definitely requires greater scrutiny and exposure when neurology patients are being routinely gaslighted in the way that Lady Shambles has described above.

    I’ve been gaslighted by neurologists too. They tried to pin a diagnosis of ME on me, which was completely inappropriate. And MUS. And FND. Patients imagine that they’re one of the unlucky few but that’s no longer the case. With high MUS/FND prevalence rates being touted with respect to both primary and secondary care, millions of UK patients (and billions worldwide if it catches on) could fall foul of this savings-driven agenda.

    Will long-covid patients suffer the same fate?

  3. Joe Canepa Avatar
    Joe Canepa

    Serious research for ME/CFS and long haulers may have been set back with scientists looking at the way Wakeflied, Mikovits and Ruscetti were shouted down. The basic denial was the brain damage was due to viruses, maybe deeper by phages.

  4. Lorraine Lucock Avatar
    Lorraine Lucock

    Great article.Really hope the tide will turn soon for the millions of us in the world still suffering with no answers.

  5. Sue Avatar

    The MUS/GET/CBT/FND brigadiers remind me of the Wicked Witch of the West, in The Wizard of Oz (the 1939 movie version). The Wicked Witch has launched the Flying Monkeys against Dorothy and her friends, doing every thing she can to gaslight them (and get her hands on those red shoes!). Near the end of the movie, however, a bucket of water splashes on the Witch, and she starts melting. Famous last screams: “EEEK! You cursed brat! Look what you’ve done! I’m melting! Melting! Oh, what a world! What a world! Who would have thought a good little girl like you could destroy my beautiful wickedness! EEEK!”

    It’s the same with Wessely and his coven of (male and female) witches, except instead of melting completely away, a few of them melt just enough to shut up for a while–then one of them pops up again with bile until someone splashes them with more evidence that their “thing of beauty” really was their “beautiful wickedness.” They then melt a bit more, and the cycle repeats. They bring up old articles from their BFFs, pretending they’re brand new. Meanwhile, with each splash of evidence cycle we must endure their screams of “I’m melting! Oh, what a world! What a world!”

    It’s not just ME/cfs patients who are being gaslighted (gaslit?) by this coven, but now they’ve gone after people with long-covid, neurology patients having seizures, practically anybody with red shoes they think they can get their hands on.

    Keep splashing water on them, Dr. Tuller.

  6. CT Avatar

    “Patients would be better served by greater humility…”. I absolutely agree. That means doctors, researchers and the academics and politicians who debate these matters really listening to them, believing them and treating them as equals rather than as unintelligent underlings. Instead we get arrogance and ignorance and eminence-based everything. For example, I’m astounded that the Society to Improve Diagnosis in Medicine (SIDM) isn’t lobbying for the MUS-psych construct to be dismantled, especially when they maintain that recognizing uncertainty in diagnosis is crucial. They know that women particularly are being discriminated against but appear to call for more research rather than the condemnation and dismantling of the MUS-psych model – . But who would choose to rock the medical boat?

    Another example – let’s look at endometriosis in women. The UK Parliament’s All Party Political Group (APPG) on Endometriosis published a report of the findings of their inquiry into the disease. Acknowledging how women have been ‘let down’, (by ‘let down’ read ‘badly failed by being told that their pain is all in their heads’) did Edward Morris, President of the RCOG, condemn the MUS-psych model for teaching doctors to regard chronic pelvic pain in women as a psychological/mental health problem? See for yourself - . His suggestion is….wait for it…..more medical research. Endometriosis seems to be one of his main clinical interests but I hear no condemnation of the MUS-psych construct from him (but please correct me if I’ve missed something). Let’s waste some more money on research when the real problem is staring us all in the face.

    To my mind this is exactly how the oppressed remain oppressed and the privileged remain privileged in societies that profess to care.

  7. Paul Watton Avatar
    Paul Watton

    Thank you once again David (and Prof Levinovitz) for exploring this topic.
    It’s so important that these issues are debated publicly – I’ve sent links to both pieces to my M.P., together with another plea to him to get involved in addressing the automatic assumption that MUS are psychogenic, the shortcomings of peer review and the circumvention of research integrity guardrails here in the U.K.
    On a related theme, I had a somewhat “testy” conversation with the Head of the multi-GP practice that has taken over from the (now retired) Dr. in my local area, from the previous one-man operation. I won’t bore you with the backstory to the consultation, but, given that this was the first time I’d spoken to him in the 15+ months since the takeover, I took the opportunity to ask him how continuity of care would operate in a multi-GP practice and where the medical profession’s knowledge of the illness was limited. The main concern that I tried to convey to him was that whilst it’s helpful that the NICE clinical guideline is being updated, it will always lag way behind the cutting edge of research and therefore I would like to be able to share carefully selected examples of such research with him and his colleagues.
    The answer I got was troubling, insofar as it could be summarised as “I’m not going to say that I don’t want to know, but I don’t want to know.” (I suppose that you could call it wilful ignorance)
    The longer answer was that he and his fellow GPs apparently aren’t now prepared to devote the time to read such research, because they are only required to provide “basic medical services” – presumably irrespective of whether their decision-making is based on correct assumptions /valid evidence or not.
    My point is that general practice in the UK is now shifting away from one-man operations (the traditional model of the lifelong local family doctor) to a more corporate, impersonal structure, where there are only limited possibilities for building the same kind of lifelong relationship with your G.P. (Apparently, the NHS will no longer allow new one-man operations to take over from retiring GPs)
    In this situation, the role of NICE guidelines is pivotal. By no longer treating them as merely “advisory” or optional, particularly in the case of an illnesses such as M.E., they become the means by which profit-focussed GP practices justify the avoidance of having to read research information provided by patients like me. This is not only damaging to the Dr / Patient relationship but, if the content of the guideline is wrong, the consequences are disastrous for the patient, with no repercussions for the Dr.
    Whilst the prospects for patients suffering with “Long-Covid” today, are in some respects, much better than those of an M.E. patient were 30 years ago, many are perhaps unaware of the ideological “battleground” which has already developed around treatment recommendations for their condition.
    It is in this context David, that your work continues to be so valuable.
    I hope that more people in the UK will consequently recognise the need to put pressure on government to instigate much-needed reforms.

  8. CT Avatar

    “Knowledge is Liberty” but doctors don’t want to know. Hmm.

  9. Marion Brown Avatar
    Marion Brown

    Thank you David – this is most interesting.
    There is one big piece of the puzzle overlooked in Alan’s VICE article … and indeed generally. No-one seems to have considered the role of ‘effects of meds’ – and especially the meds most often prescribed for anxiety & depression .. which, by design act on the CNS & ANS …
    I have just had a co-authored piece about this published by JCPCP (Journal of Critical Psychology, Counselling & Psychotherapy – should show on the website soon)
    Hoping this may stimulate questions around this issue … When I have asked neurologists & neuropsychiatrists they seem very evasive…. ?!

  10. CT Avatar

    As I understand it, in the UK, a psych/Wessely lobby for years denied the significant (rather than just mild) problems of adverse side effects and particularly withdrawal effects associated with antidepressant use, and refused to heed the cries of patients who have been so badly affected by this. ( and - Many who try to get off such drugs suffer appalling withdrawal effects like ‘akathisia’, but neurologists have little or no understanding and dismiss them as MUS/FND. No doubt some ME patients have been affected too by being inappropriately put on psych meds for what is a biomedical problem, and IAPT includes antidepressants as a treatment alternative at step 3 I believe, so those who are referred to IAPT and who don’t respond to CBT/GET are likely to be prescribed them, potentially making their situation even worse.

    Wendy Burn, who succeeded Wessely as President of the RCPsych, did eventually recognise that there is a problem - – and the RCPsych produced a ‘Patient Information Resource’ on withdrawing from antidepressants, but I’m not sure that much has happened since then in the medical world to make doctors and patients aware of the harm that these drugs can sometimes do and the ‘medically unexplained symptoms’ that they can cause, especially when they’re not appropriately prescribed or monitored. During the pandemic, antidepressant use here has increased markedly - – so it can be expected that there will also be a marked increase in withdrawal problems when the pandemic comes to an end. Neurologists will need to be able to identify these. There’s not much chance of that happening when anything that is not explained by known neurological disease is dismissed as ‘functional’/FND and patients are signposted to IAPT.

  11. Marion Brown Avatar
    Marion Brown

    This article has appeared – about our JCPCP ‘Patient Voice’ piece….
    There are good further reference links within it too:

  12. CT Avatar

    Thanks, Marion. This is what the iatrogenic harm of incorrect psych diagnosis and inappropriate medication can look like for ME patients as well as for many others.

  13. JB Avatar

    I don’t see anyone asking if medical treatment or drugs are causing long-term problems. I’m a member of a family that has been highly impacted by medical error. In fact, the only time I ever ended up in an ER, it was due to a medical error. And it was not made clear to me for many years. I had always thought I’d suffered an allergic reaction to the drug, until my cousin’s wife, who’d spent her career as a GP in Canada, said to me when I told the story over lunch one day: “Oh, no. That doctor missed a lecture on Demerol. You should never have been given that, given what you had going on.”

    The FIRST question I’d be asking about long-term health problems is: “Are the doctors all f—king up?”