Trial By Error: Some Thoughts on Long-Covid, ME/CFS and MUS

By David Tuller, DrPH

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Among the troubling phenomena to emerge from the pandemic are the reports from so many Covid-19 patients of a range of persistent non-specific symptoms—fatigue, dizziness, cognitive impairments, and on and on. Some people who got sick in the early days, back in March and April, have now been experiencing symptoms for six months or more—the length of time required in many (but not all) definitions of ME, CFS and their variants to render a diagnosis.

It is clear that there are overlaps between post-Covid symptoms and ME/CFS, but it is also clear there are differences. How and where those boundaries are drawn will have serious implications for diagnostic strategies and treatment protocols going forward. These issues have undergone robust debate in online ME/CFS and “long-Covid” communities. Now Time magazine has picked up the issue, recently posting a nuanced piece about the relationship between ME/CFS and “long-Covid.” Since #MEAction’s Jaime Seltzer was a key source for health reporter Jamie Ducharme, the presence of nuance was not at all surprising.

(Can “long-Covid” and “long-hauler” be used without ” ” at this point? I’m not sure. Copy-editors?).

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MUS and post-Covid symptoms

Many post-Covid patients report that doctors have dismissed their complaints and/or attributed them to psychological problems like anxiety and depression. Of course, patients diagnosed with ME/CFS have experienced similar medical gaslighting for years. So have patients diagnosed with so-called “medically unexplained symptoms,” also known as “persistent physical symptoms” and related terms.

Although neutral on their face, these terms in fact function as psychiatric constructs. Those who believe in the robustness of these categories also maintain that the conditions are amenable to recovery through non-pharmacological interventions—usually involving some version of cognitive behavior therapy. These investigators define their approach as “biopsychosocial.” Unfortunately, their interventions generally focus on the “psycho” and “social” aspects at the expense of the “bio.”

In the UK, members of the biopsychosocial ideological brigades, who have a tendency to over-interpret or otherwise misrepresent their research findings, have dominated this domain. These investigators helped engineer a successful effort to include patients with MUS in the metastasizing National Health Service program called Improving Access to Psychological Therapies. In IAPT, the MUS category includes chronic fatigue syndrome, irritable bowel syndrome and MUS not linked to a specific syndrome.

The PACE trial, whose first results were published in 2011 in The Lancet, was essentially a “proof-of-concept” study for the expansion of IAPT. The trial purported to prove that CBT and a behavioral approach, graded exercise therapy, could lead to recovery from ME/CFS. According to the unproven and delusional hypothesis, patients suffered solely from deconditioning and an unhelpful or dysfunctional conviction that they had an organic illness. To get better, they needed either CBT for some cognitive restructuring and/or GET to reverse the deconditioning. Per the hypothesis, full recovery was possible.  

The PACE claims have been discredited. A major re-analysis of the data documented that the reported findings were largely an artifact of the investigators’ decision to weaken all their outcome thresholds late in the game, among many other missteps. The CDC stopped referencing PACE years ago and no longer recommends GET and CBT for ME/CFS. Yet PACE has not been retracted and the CBT/GET treatment paradigm still holds sway in the UK and other countries. Now these experts are seeking to apply their questionable approach to people with prolonged symptoms after Covid-19, as I have noted.

In the US, the battle lines over MUS and PPS and related issues appear less rigidly drawn. Yet clinical care is still influenced by the general tendency of medicine to presume that people experiencing symptoms for which no organic explanation has been identified most likely need psychologically oriented treatments. In the 1990s and later, the UK’s approach to chronic fatigue syndrome exerted a major detrimental impact on decisions taken by the US Centers for Disease Control and on US medical practice in general.

The biopsychosocial approach to MUS has also made inroads in the US, and could influence the care and treatment available to long-Covid patients going forward. Because these sorts of interventions are short-term and inexpensive, government agencies and disability insurance companies are often happy to adopt them in efforts to save money, even when evidence for their effectiveness is minimal or non-existent.

A key document in the NHS effort to promote the biopsychosocial approach to MUS is the Joint Commissioning Panel for Mental Health’s Guidance for commissioners of services for people with Medically Unexplained Symptoms, published in 2017. Goodelf, an anonymous blogger, has recently posted a revealing analysis of how the JCPMH document distorts the available data to strengthen its case. The analysis relies on doing something casual readers won’t—reviewing some of the studies cited to double-check whether they do or don’t support the points being made.

(Goodelf’s latest is the sixth in a series of posts on the research on MUS and how it has been applied in UK health policy. LIke this one, they can all be found on the Opposing MEGA website.)

Both MUS and ME/CFS are likely to become prominent points of discussion and contention as the number of long-Covid cases rises. Many specialists will want to grab slices of the long-Covid pie–whether or not it is warranted by the science. More and more journalists will likely be covering these issues–sometimes responsibly, sometimes not. This could all end up being a mess, although research arising out of long-Covid might very well shed light on mechanisms behind ME/CFS and MUS as well.

Comments on this entry are closed.

  • Alicia Butcher Ehrhardt, PhD 20 October 2020, 6:47 pm

    ‘non-pharmacological interventions’ are not suggested for Ebola or Polio or Bubonic Plague or Anthrax. It is unconscionable to suggest them for Covid-19 OR ME/CFS.

    The ‘psycho’ part is very real, only it doesn’t mean quite what they want it to mean; it means what they are and how they are behaving toward people with physical ailments. Ailments that might be improved by pacing, resting, and other coping strategies – simply because ILLNESS is improved that way and worrying and pushing oneself helps nothing improve.

    These people pushing pseudo-therapies which don’t work have too much at stake professionally to back down – and know what’s coming if they get disproved. WHEN they get disproved. They haven’t been thinking rationally and scientifically for a very long time.

  • CT 21 October 2020, 2:22 am

    This week in the UK we saw the publication of a report by the All-Party Parliamentary Group APPG on Endometriosis in women -https://www.endometriosis-uk.org/news/mps-call-urgent-government-action-support-15-million-endometriosis-new-report-shows-no#.X4-yTEnsa70 – which highlighted the appalling failure of UK medicine to diagnose women correctly with this disease. Despite the fact that endometriosis has been understood as a physical disease for over a century and patient/campaign groups and charities have been active for decades to raise awareness, the average time to diagnosis has not improved in a decade for UK women with endometriosis and still stands at 8 years. Women seem to be very good at identifying the problem – their doctors tell them that their symptoms are ‘all in your head’. And it’s no wonder that their doctors think this, because the key endometriosis symptoms of menstrual pain and other period problems, and of pain or problems during sexual intercourse, are included in the PHQ-15 of psychosomatic symptoms that is extensively used to determine whether patients have medically unexplained symptoms or ‘MUS’. The PHQ-15 is used for identifying patients as having MUS for the IAPT programme -https://www.england.nhs.uk/wp-content/uploads/2019/12/iapt-manual-helpful-resources-v2.pdf – and is recommended for clinicians to use to clinically verify MUS status for patients who have been picked up as having possible MUS by the software packages that trawl through GP patient records looking for MUS targets. I understand that versions of the WHO’s CIDI have also included these types of symptoms as being indicative of somatization (I’m not sure if the latest version does). This is institutional sexism, and I firmly believe it is behind the dreadful position that women with endometriosis find themselves in, with ruined education, careers and relationships. And yet, as far as I can see, the APPG report doesn’t mention that these symptoms are included as a mental health disorder in the IAPT manual. Under ‘Point 3 Awareness’ of the APPG report, women’s awareness comes before doctors’ awareness, but women are all too aware of their pain, the problem is that they are not believed about it. And so the report skirts around the problem which lies with a MUS construct that, even for a disease that is patently and undeniably ‘physical’, sees patients labelled with a mental illness. Of course these women suffer mental health problems, who wouldn’t when they are being gaslighted by the very people who are supposed to care for them? But the cure for this specific problem isn’t better mental health care, research or educating women about endometriosis, even though those things may be helpful. The cure is removing these symptoms from the somatising checklists and educating doctors about how badly this psych construct has harmed women, and not only in relation to endometriosis.

    But Edward Morris, president of the Royal College of Obstetricians and Gynaecologists (RCOG), seems to have put the delayed diagnosis and ‘poor’ (‘POOR’!) experience of women with this disease down to a data gap, and he called for more medical research -https://www.bbc.co.uk/news/uk-54513072.

    For endometriosis, biomedical research has resulted in biomedical treatments being available; it’s not lack of research that’s stopping women from getting diagnosed and treated. But for people with ME/CFS (around two-thirds women?), lack of biomedical research has harmed them and still is harming them. They have been left in the same MUS/psychosomatic wilderness for way too long, punished too for their supposed ‘hysteria’ and ‘false illness beliefs’, but they have also been cruelly denied any meaningful biomedical research into their condition that could have led to effective treatments being available.

    Isn’t it time that all patients who have been discriminated against under this MUS construct got together to call it out as the institutional prejudice that it is and to call a stop to it? If only there was a place where people could go to register how long they have suffered by doctors dismissing their very real physical symptoms as ‘all in their heads’.

  • Lady Shambles 21 October 2020, 5:11 am

    Professor Chew-Graham was a main player in the development of the “atrocious online training course” – METRIC training for ME/CFS (-https://www.virology.ws/2019/01/28/trial-by-error-my-letter-to-professor-chew-graham-about-metric/-) – and the 2017 JCPMH guidance On ‘MUS’ (including ME/CFS) that Goodelf has recently very effectively discredited (see David’s link above). She now seems to be attempting to assume a position of some authority in relation to Long-Covid with this qualitative study – -https://bjgpopen.org/content/early/2020/10/12/bjgpopen20X101143.abstract- and her involvement in this RSM instructional video – -https://www.youtube.com/watch?v=tmzmx3LwEjY&feature=youtu.be- . Unless people like her are held to account for their past actions, Long-Covid patients WILL find themselves in the same appalling mess that ME and ‘MUS’ patients are in.

    It ‘MUSt’ also be remembered that ‘MUS’ is a political construct, a means to shepherd people who would in times past be labelled as ‘heart-sink patients’ toward cheap psychological interventions and thus limit continued opportunity to access further testing or any care. It ‘MUSt’ be remembered that for the purposes of the construct all sorts of conditions are lumped together and ME is at the core of that. Any of us with ME will know that our discrete neuro-immune disease has nothing to do with ‘psychosomatic medicine’ (if that isn’t an oxymoron in itself) and is entirely a biomedical issue, but that matters not to those who have created and continue to ‘adjust’ the MUS dogma, and the same applies to other groups of biomedical patients who are being lumped into this grubby wastebin. As people with ME, we need to be seen, investigated and cared for in a way that is appropriate to our particular disease. Those other patients who have been devoured by MUS require the same. But for those of us with ME, even though we might balk at having to come to terms with it, we must realise that we have to fight MUS because MUS is the web in which we’re being trapped.
    I’m heartened to read that David Tuller is covering this murky aspect of UK Establishment dirty-dealings. It requires exposure in the same way that PACE did.

  • CT 21 October 2020, 6:24 am

    I whole-heartedly agree, Lady Shambles. Those who don’t want to engage with the politics of MUS are biting off their noses to spite their faces. MUS is a POLITICAL issue that has been foisted upon us; we would all agree that ME/CFS is a disease entity in itself which needs to be MEDICALLY dealt with as such. Medically, ME/CFS may have very little to do with endometriosis, for example, but politically it has everything to do with it.

    The same applies to the sex discrimination issue. MEDICALLY, there may well be a physiological female prevalence in ME/CFS, but POLITICALLY, we know that doctors are being incorrectly taught to expect more women to have supposed ‘MUS’ psychosomatic complaints (and they include ME/CFS in this) and are therefore predisposed to judge their physical symptoms as psych-related. The result is a mess with many patients being incorrectly diagnosed and suffering long delays to their correct diagnosis. For individual diseases, we need tighter definitions for clinicians and researchers to follow, not woolly ‘MUS’-style ones. But I think it’s essential to attack the political MUS construct to help achieve that, and we could have a lot of people on our side if we engaged with other MUS discriminated groups.

    And I’d say the following to those men who would rather not see the sex discrimination argument brought into the ME/CFS/MUS debate:
    Is the age of chivalry now 6 feet under? Even if you don’t want to acknowledge any connection between endometriosis and ME/CFS, you should stand up to this endometriosis injustice on behalf of your wives, daughters, mothers, aunts, nieces, granddaughters and female friends. You may find that your concern for them is prettily rewarded.
    Also….. there may be fewer of them, but what of the men who suffer from chronic testicular pain, for example? Do they fare any better? Well, take a look at Jon Stone’s neurosymptoms.org website – http://neurosymptoms.org/other-symptoms/4594358019 under “Chronic Pelvic Pain / Painful heavy periods”.
    Similar could happen to you or your kinsmen.

    Nobody is immune to the horrors of ‘MUS’……and Long-Covid patients, including a significant number of doctors, have been finding that out. So get out of your individual disease silos and understand the politics. I suspect that’ll be the most effective way to stop the ‘powers that be’ from allowing all this suffering to continue.

  • CT 21 October 2020, 9:18 am

    I said above that “nobody is immune to the horrors of ‘MUS’ “, and that includes Americans.
    David said:
    “In the US, the battle lines over MUS and PPS and related issues appear less rigidly drawn.” etc.
    But don’t forget Kurt Kroenke’s involvement with MUS. He’s been working away for decades in this area and has collaborated with Michael Sharpe, Marianne Rosendal, Per Fink and Chris Burton. This 2006 article -https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1924713/ co-authored by Kroenke may explain why the ‘MUS’ strategy hasn’t been so obvious in the US (see point 8 – “Locus of therapy and reimbursement”). It seems to boil down to talking therapies being too expensive. But things are changing, with cheaper computer apps taking the place of the more expensive talking therapies and with the UK promoting its IAPT model in the US -https://www.oxfordhealth.nhs.uk/news/new-york-times-on-our-iapt-service/ , a model which has more of a production-line approach to administering therapy and monitoring outcomes. Cheaper therapy delivered via computer app is becoming the order of the day. US company Mahana Therapeutics entered into a licence agreement with King’s College London with a view to it supplying the ‘Parallel’ computer app (that was tested via the ACTIB Trial’s ‘Regul8’ app) for IBS to IAPT. [https://www.virology.ws/2020/01/28/trial-by-error-more-on-the-mahana-therapeutics-deal/]. The American healthcare system is now under tremendous strain. Do people think that, when this Covid crisis is over, American providers won’t be looking for ways to limit healthcare and make savings? Why wouldn’t they follow Michael Sharpe’s direction of travel and make psychosomatic medicine the major sport with regard to ME/CFS and a whole host of other chronic illnesses?

    ‘But they can’t do that if a cause is found’, people might say? Just remember that endometriosis already has a known cause, but that doesn’t seem to make much difference to the way that women are treated.

  • CT 21 October 2020, 10:43 am

    Corrections – In my comment above I should have referred to Mahana Therapeutics’ intervention for IBS as a ‘program’ rather than as a ‘computer app’. The same applies to ‘Regul8’.

    Also, the company appears to envisage a global use for its program -https://www.prnewswire.co.uk/news-releases/mahana-therapeutics-enters-into-licensing-agreement-with-king-s-college-london-for-innovative-digital-therapeutic-to-treat-gastrointestinal-condition-877800399.html , including in the United States, so not limited to the UK (or to ‘IAPT’).

  • jimells 21 October 2020, 1:43 pm

    “delusional hypothesis”

    If the deconditioning/fear-of-exercise hypothesis were only based on delusion, this rubbish would’ve disappeared decades ago. I assert that their hypothesis is a fraud being promoted by a long-standing criminal conspiracy.

    The new BACME “Position Paper on the Management of ME-CFS” is a continuance of the fraud. It’s interesting that they have corralled [In]Action for ME into collecting the opinions of patient advocates regarding their new marketing materials. BACME needs to know if we are buying their new look and whether it needs a bit more obfuscation.

  • AB 22 October 2020, 1:20 pm

    I still seems surreal looking back 30 years that any doctor hearing of my serious ill health after a virus could possibly think that this was some sort of “normal fatigue” and the never ending sore throats, swollen glands and many more symptoms were just “something going around” that I had picked up afresh or that “fatigue” (a word I never used) was the most serious or debilitating one.

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