Working knowledge, uncertainty and ontological politics: An ethnography of UK long covid clinics, 2024, Greenhalgh et al

Abstract

Long covid (persistent COVID-19) is a new disease with contested aetiology and variable prognosis. We report a 2-year ethnography of UK long covid clinics. Using a preformative lens, we show that multidisciplinary teams (MDTs) built working knowledge based on shared practices, mutual trust, distributed cognition (e.g. emails, record entries), relational knowledge of what was at stake for the patient, and harnessing uncertainty to open new discursive spaces.

Most long covid MDTs performed the working knowledge of ‘rehabilitation’, a linked set of practices oriented to ensuring that the patient understood and strove to ‘correct’ maladaptive physiological responses (e.g. through breathing exercises) and pursued recovery goals, supported by physiotherapists, psychologists and generalist clinicians. Some MDTs with a higher proportion of doctors (e.g. cardiologists, neurologists, immunologists) enacted the working knowledge of ‘microscopic damage’, seeking to elucidate and rectify long covid’s underlying molecular and cellular pathology. They justified non-standard investigations and medication in selected patients by co-constructing an evidentiary narrative based on biological mechanisms. Working knowledge was ontologically concordant within MDTs but sometimes discordant between MDTs. Overt ontological conflict occurred mostly when patients attending ‘rehabilitation’ clinics invoked the working knowledge of microscopic damage that had been generated and circulated in online support communities.

Open access, https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13819

 

Greenhalgh really does avoid mentioning ME/CFS on purpose, doesn't she?
The opening statement says unequivocally, "Long covid ... is a new disease", whilst she later cites Al-Aly & Topol. Both of these authors regularly reference the similarity with ME/CFS.

She does some good work, but the continuing ongoing dismissal and cruelty (by omission) towards us ME/CFS patients is, in my view, unforgivable.

Is there any indication that she has any clue of how hurtful this is to us? ... me?

Is there any indication (at all) that the penny is dropping, that her affiliation to the Wessely school of thought on ME/CFS, is misplaced?

 

Unfortunately, like so many medical-humanities papers, it's written in that turgid jargon-laden pseudo-intellectual style that pervades so much of the academic literature these days, all ontological concordances and paradigmatic differences.

Also it seems that the rehabilitationists have absorbed that hoary old psychosomatic trope about over-medicalisation:

If they don't believe that further investigations would be of benefit to their patients then they should explain that openly and honestly without this kind of prejudice.

Both sides described in this paper - the rehabilitationists and the POTS clinic - are engaging in quackery. The rehabilitationists are talking about altered feedback loops and doing unnnecessary physiotherapy and breathing-pattern training and online mindfulness and the dysautonomiacs are talking about vagus nerve damage and prescribing unnecessary anticoagulants and antihistamines. Both are operating based on beliefs rather than evidence.

We need a third way: pragmatic and compassionate care by people who know what they don't know, medical management of symptoms like sleep, pain & feeding problems where appropriate, and a well-funded accelerated research programme.

 

A former lecturer / supervisor friend called it Ooh Look At My Collection of Big Words. She occasionally asked students to rewrite a paper in three tweets, either because she wasn't convinced they knew what they were on about or there was barely enough actual content to fill them.

 

Yes!
How do we make this happen?
Seriously?
I am willing to write letters, have (virtual) meetings etc.

 

Another concern I picked up from this paper is the use of an active stand test as, essentially, a test of legitimacy. This passage is atrocious:

 

"When she came to us, we did the Active Stand Test. It was normal!’ Some staff roll their eyes; some laugh."


What an unprofessional lot of HCPs. What on earth made them think that eye rolling and laughing at patients is any part of their job! If I was their patient I'd go away and never come back.
.

 

So the ivabridine....did it help or not? Is this evidence for holistic care that includes the biomedical AND support regarding pacing and work adjustments? Is this evidence that cardio alone, or pacing/advocacy support ALONE, is not enough?

 

Especially as the only thing that appears to have worked was pacing and cutting down her hours at work. So healthcare delivered a big fat nothing, and whilst she might be "miles better", no one's bothered to ask whether she can still pay her bills.

 

The thing is that Long Covid is a much broader diagnosis than ME/CFS. So there are some patients for whom anti-coagulants are very appropriate - but often these will be post-hospitalisation cases or people who have elevated d-dimer readings (I'm under the care of the UCLH Long Covid Clinic, which is meant to be the gold standard clinic, and they do prescribe anti-coagulants but only in very specific cases based on tests, and they only prescribe a single anti-coagulant at a time. They have never wanted to put me on an anti-coagulant). Anti-histamines, in my view, are appropriate for people who have MCAS - famotidine and loratadine are not particularly high-risk medications. Then for POTS there are a whole host of medications that can be prescribed, from beta blockers to ivabradine. So when you look at the totality of the Long Covid population, there are actually quite a few subsets where medications can reasonably be prescribed - but ME/CFS is not one of those subsets.

This all also applies to rehabilitation - I'd imagine that most patients seem to improve "due to" rehabilitation because most Long Covid patients improve over time, and likely don't have ME/CFS (if you look at the ONS statistics around Long Covid, most patients aren't particularly debilitated, and I'd imagine that the greatest overlap between Long Covid and ME/CFS comes in the most debilitated subsets of Long Covid). But for Long Covid patients who don't have ME/CFS, gradual rehabilitation is probably a neutral intervention as long as it's not done too intensely rather than the huge negative that it is in the case of ME/CFS and the ME/CFS subset of Long Covid.

 

Extremely cringe. All pompous style and zero substance.

It's not. The clinics are famously useless and widely criticized for it. That's all there is to say about it. But the paper mindlessly accepts the notion that it must be effective, effectively contrasts only a tiny subset of the research efforts as if they're equivalent. Rehabilitation has long been fully explored here, there has been nothing to research for years. It's a tiny corner that was fully explored quickly decades ago, and has been stuck in a loop ever since. The biology on the other hand is gigantic and could be researched for decades and never come close to fully map it.

This paper is basically the usual science vs fantasy struggle, like when early science started to explore some of the wide areas and it was contrasted with traditional faith-based cultural approaches. It may as well be about the introduction of germ theory of disease and how it clashes with the ideas at the time, putting them not even on equal footing, but choosing a tiny subset of it and declaring that in comparison, it's too early to tell which is better.

There is so much stereotyping and mindless reductionism, strictly for effect. It actually reminds me of Edison killing an elephant with DC current, as if it somehow proves any other point than that he was an asshole willing to kill an elephant to fail to prove a point.

You can't talk about knowledge when there is no actual knowledge. This word salad is a perfect reflection of the complete disconnect with reality that the biopsychosocial model suffers from. The clinics are a massive failure, but you would never know this reading it. They never developed any real knowledge precisely because they take the wrong approach, while the proper approach, science, is an arduous and difficult process.

The best comparison is probably with Mother Theresa and her network of 'clinics'. They weren't really clinics, none of them did any medical care. They were religious places where the dying could suffer in communion with God, according to the faith model she held. When she herself got ill, she was flown on private jets to expensive private clinics in the US. Here this paper would contrast them as equally valid, despite the fact that every single person involved would obviously choose the medical approach, but they don't know that, because they're not suffering right now. They have zero perspective on this.

Specifically, they drew from the failed rehabilitation models pushed onto ME/CFS for years. Which Greenhalgh knows, and yet chooses to omit. A model that has always affirmed that there is nothing biologically wrong here, that it has nothing to do with infections, and has never shown any effectiveness.

This looks to me exactly like misnaming someone on purpose. Can't even get the name right? Why the quotes?

Contrast this, "characterised by profound fatigue", with the definition of LC she chose, somehow with a citation to one of her papers, as if she had anything to do with this definition:

This is the proper definition of ME/CFS, and yet she contrasts this with "‘MECFS’" as being different. Incredible display of ignorance.

It does not. This is false. Many clinics are even closing precisely because they don't have any treatments and rehabilitation doesn't work, and for those still open it's commonly said that there is no need to do anything beyond basic diagnostic work-up for the same reason. Many GPs refuse to refer patients for the same reason. There are regular articles and studies showing the complete ineptitude of this model.

The growth of pseudoscience in medicine is one of the biggest scandals of our time. It's become a de facto standard. And this paper is nothing but self-serving pompous nonsense. As usual with TG.

 

Putting aside the useless breathing exercise thing, this is the whole controversy with PACE, where she has taken the other side, that you can't rehabilitate this illness, especially not with exercise. This is everything about it, why we have been vilified to the point where TG herself named and shamed us as an example of bad patient advocates. For saying exactly this, which is now sometimes being recognized, but still misses the whole point. Even though she misrepresents the whole rehabilitation paradigm, only ever mentioning "breathing exercises", omitting the more standard generic fitness programs.

So either she takes sides without realizing what they even are about, or doesn't even understand what the controversy is about. Or doesn't care about the blatant contradiction. Who even knows at this point?

 

I doubt that care work is well paid. The idea that a patient would be so desperate that they would spend very limited funds on private clinics that achieve nothing just appals me.

 

A raised dimer can be the result of a number of different processes and like everything in medicine it needs to be interpreted in context. If there are post-COVID coagulopathy patients they should probably be under the care of a haematologist rather than a Long COVID clinic.

I'd disagree that medications cannot "reasonably" be prescribed in ME/CFS cases. There are obviously no medications to treat ME/CFS but in select cases I think judicious use for symptomatic control of headache, sleep problems, pain etc is justifiable.

I'd also disagree that rehabilitation is ever a "neutral intervention". If it can have the beneficial effects its proponents claim then it can also have adverse effects and I don't think these have been adequately explored in Long COVID cases whether they are similar to ME/CFS or not.

I've never thought that MCAS is a legitimate diagnosis. Years ago I skimmed through Afrin's book (not sure if that's been discussed on S4ME or not) and immediately came to the conclusion that he didn't know what he was talking about - and I've recently, reluctantly, come to the same conclusion about POTS. There are certainly people with allergy & pseudoallergy & orthostatic symptoms but I don't think the evidence base for classifying them as separate syndromes is really there.

 

I'll respectfully disagree about MCAS and POTS. But even if you don't believe there is sufficient evidence for either being discrete syndromes, a) in the case of POTS, ivabradine and, in particular, beta blockers are clearly beneficial for patients who have orthostatic symptoms connected to an elevated heart-rate and beta blockers in particular are an incredibly safe medication, b) in the case of MCAS, the dual anti-histamine therapy that UCLH provides and is being tested in the large UK treatment trial is a very safe intervention. I'd understand the concern if these clinics were putting lots of patients on triple anti-coagulation therapy or lots of anti-virals, but these interventions aren't dangerous and have at least some grounding.

The broader question this all relates to is what doctors can do in the absence of rigorous medical evidence. At the current rate of research, we could be waiting 5-10 years to get the results from various RCTs looking at re-purposing medications. I strongly believe that, in the absence of those results, doctors at these clinics shouldn't be limiting themselves to prescribing medications just for sleep problems and pain. I also think they shouldn't be prescribing potentially harmful interventions - I was personally harmed by a doctor who was convinced that HBOT would cure Long Covid - but the NHS is famously risk-averse, and from the Long Covid support groups I've participated in, I am yet to hear of a clinic dishing out potentially harmful and un-evidenced medications. The private sector is a different equation.

In terms of rehabilitation - I agree that it probably isn't neutral in the way that no intervention is neutral. However, the reason that we're so skeptical about rehabilitation in this forum is due to the intense particularity of ME/CFS's interaction with exercise and rehabilitation. There needs to be more research surrounding rehabilitation and other Long Covid subsets, but the debate around rehabilitation and those subsets doesn't need to be nearly as charged as the debate surrounding rehabilitation and ME/CFS.

And then again, just more broadly - Long Covid can include autoimmune conditions, post-ICU syndrome, blood clots, strokes, myocarditis, gastro-intestinal disorders. Quite a few of the patients who develop these conditions will be seen in other specialties, but some are seen under the Long Covid umbrella - and in these cases there is obviously very good evidence surrounding what to offer, and given that some Long Covid clinics have doctors from a whole range of specialisms, you'll have doctors who are more than qualified to prescribe medications. My dad, who developed a blood clot following a hospitalised covid infection, had it treated under the purview of a Long Covid service in dialogue with the hospital he was admitted to.

 

I think this is a very damaging paper to write, I hope their professional reputation will be thoroughly damaged by their responses toward clients - "the eye rolls and laughter" and the whole narrative. But, of course, this is now in the literature and will feed into the thoughts of any health practitioner who reads this (and is on the fence), buys this sort of narrative, and is likely then to reinforce their prejudice and just further the stigma.

As a retired psychiatrist, I am appalled by the case histories that all seem to channel into their very biased narrative (that I reckon does include the ME/CFS diagnosis being psychosomatic) - but also any emotion related to having Long Covid. They are basically saying if you have emotional distress due to Long Covid, that is the likely source of your Long Covid.

What a snarky, dismissive, arrogant attitude about patients! Totally unprofessional. I have been in a lot of Psychiatry MDT's over the years and we did not sit there rolling our eyes about any client. If one did, the team-leader or one of the MDT team would have taken us aside and asked why we were responding like this. Behavioural responses like this are a sign of countertransference issues that need to be addressed, as soon as possible, as this affects our ability to do our work properly (in every sphere).

I would like to know their response if she had had a history of a mental health problem that she had not recovered from? Would she be referred immediately to Mental Health and the medical MDT could wash their hands of her? "Eleanor" is a psychologist and "Gemma" is likely to be a psychiatric nurse who currently works in mental health and has electronic authority to access the Mental Health Record (as these are always separate (and confidential to all disciplines outside mental health) on the Electronic Health Record).

I wonder if the fictionalised Eleanor and Gemma rolled their eyes? And when they saw other staff roll their eyes or laugh about the patient, did they consider this unprofessional? did they say something to the team about their lack of respect and compassion for someone struggling with their health. (or were they tired of the long talks they claimed to have had with some clients?). Or is Long Covid one big joke (unless your tests show "microscopic damage"). Is this the way these people get their kicks? - so handy to have a scapegoat for all their uncertainties and lack of competence and knowledge.

The occupational therapist saying "once we got to the nitty gritty" groupspeak for their perceived understanding of her presentation. Did they enquire how this had affected her ADL's (activities of daily living), did the OT have any recommendations for aids to help her mobility and ADL's. Or is that left for the mental health team to sort out....Or do they just offer breathing - the panacea for all symptoms?

They state they ignore the fatigue and mental health history...(that is because we only deal with "medical problems") and they are shockingly honest about this: "findings that do not fit this evidentiary narrative are discursively rejected" Basically saying not our problem, we don't have to be compassionate or caring to her now...pass her to Mental Health, they can deal with her. How callous.

I am finding their "collective clinical gaze" seems more about putting their ignorant label on someone and shipping them out. They seem very proud of the "MDT's efficiency". Really?? shouldn't it be about providing quality care (which includes compassion). The patients may have waited months to be seen, and you sit around in MDT laughing and rolling your eyes! I really hope they get big kickback from many professional groups about their behaviour and attitude (but cynically I do wonder if this will happen, I live in hope).

More inappropriate responses in the paragraph below...the "sigh", emphasis on the "lengthy" (too many presentations, medical care etc and not better...must be a mental health problem!). She didn't engage? what with? was it because she was in PEM, online courses culturally inappropriate? This paragraph is full of very laden terms - basically non-compliance with their treatment and CBT....what sort of CBT? CBT for health anxiety? or CBT for ME/CFS? with a nice dollop of positive psychology perhaps? The other very laden term - non-compliance with the "managing emotions in Long Covid" course - so basically she can't manage her emotions so there must be something psychologically wrong with her. I am surprised the writer didn't start talking about personality disorders and how pwLC can't manage stress, and trot out more psychological theories that pwME have been gaslit for years with. And yoga - another panacea for all things.

If this is how Long Covid clinics with MDT's are run in the UK and they feel emboldened to write a paper like this, I am so glad we have none of them in NZ and I hope we never do without careful vetting of their attitudes to post infectious conditions