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

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:
They forget to mention that certain professions try things then observe with a conservative open mind, whilst other have been taught to blag ‘only the positive’ and claim results by forcing patients to eventually say ‘ok maybe I guess that helps (but not much if so)’ then go running off that.

that quote is a perfect example of the bombast.
 
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.
Blinkered or what. And it’s all about them in tone (aren’t we clever)

why couldn’t the OT just say that they had to reduce her hours which at least meant her symptoms weren’t ’as bad’ but was no medical cure at all. Thanks @Kitty fir underlining not being able to work wasn’t them curing anyone, but at least was them using their expertise properly and hopefully not pacing up for the sake of it based on again nonsense beliefs ‘they should have got better by now for no reason’ . The triumphant tone makes it hard to see this is a tragic result not them curing cancer.

How weird they get away with all the snide BS.

These professions seem to have been allowed to step so far beyond their knowledge and skills - none of them should be doing damaging pop-psych it’s so harmful, and where do they get off eye rolling at someone having been tried on a treatment by another physician just cos they used a made-up not properly done test. It’s outrageous school playground level stuff.

physio, rehab and most of the newer psych stuff that is based on psychosomatic and not proper psychology desperately need sorting out.
 
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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.
The mother Theresa example is interesting but rather apt in a number of ways to the ‘re-educate and rehab’ sellers.

Including that they don’t seem to realise they are just pushing that and making themselves a nice job out of it that they don’t want to change (unlike those who’ve actually watched and developed based on noticing the real outcomes , so we know it’s possible if you’ve not a blinkered mindset). But also want to still claim it’s all about them helping , just in a cruel way where they won’t hear a word about harm or consent etc. unless it’s them sl***ing off other clinics who aren’t using their programme


I agree it would be very interesting if there was a ‘walk your talk’ policy /clause (in job contract) where all hcps who are staff in these programs are required to sign a form that should they themselves get ill they will only receive the treatment they dish out and are therefore foregoing access to eg turning up at a clinicians door when they can’t stand for long or get debilitylong covid and want to see if anything helps them work agsin etc. it would be interesting to see the drop-off in interest if that was required?
 
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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.
The other reason we are sceptical about rehab is that whilst you mention trials are being done fir eg antihistamines that comply with the regs drug- based treatment has, rehab decided that it would go for less and less robust methods even beyond its somehow exempting itself from those regs.

I wonder whether that ‘measure by seeing and making sure you hear what you want to hear’ is what leads to the BS car salesman bigging up of their input and trying to talk down other stuff

it means less in an area where objective results and assessment matters but seems a free fir all and part of keeping one’s job/career/selling your worth in the areas where method is Pooh poohed and if patients get worse and you can’t blag it you can just infer it’s their fault. Or that they are bad witnesses (the most disgusting thing )
 
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 your 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
Agree with every word you’ve said . Be good to see how much was spent on those staff and clinics too. Maybe some didn’t have such attitude issues. But this has demonstrated when me/cfs patients note there is an issue then it’s the staff being in denial when they look in the mirror not, as they’d like to kid themselves, any misunderstanding or misplaced ‘worry’ from patients.

Ie all have to be tarred with this because if this level proudly publishes ‘this’ then it shows what the lack of oversight and problem belief-based training leads to and it needs to be stopped. So any good ones need to blame this lot for them needing to be changed and monitored (not patients as they often do - look at this from their colleagues, are they proud to be associated with it?)

anyway such staff are sucking just how much money out of the system? which could be at least going towards pragmatic and not facetious care from others.

I’ve been saying for a long time there is an issue with a mismatch between the personal qualities skills and thinking level of those attracted by/to working under the old guidelines for me/cfs and what is needed now being the opposite.

And this just proves the issue.
 
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I agree it would be very interesting if there was a ‘walk your talk’ policy /clause (in job contract) where all hcps who are staff in these programs are required to sign a form that should they themselves get ill they will only receive the treatment they dish out and are therefore foregoing access to eg turning up at a clinicians door when they can’t stand for long or get debilitylong covid and want to see if anything helps them work agsin etc. it would be interesting to see the drop-off in interest if that was required?

AKA "dogfooding" in the computer world.
 
These professions seem to have been allowed to step so far beyond their knowledge and skills
They have gone rogue on methodology and ethics, and become a law unto themselves.

And did it in full public view.

There has to be an intervention from the rest of science. Medicine is clearly not going to stop them. Whether it chooses not to, or is incapable of it, doesn't matter any more. The outcome is the same: they are not doing it.
 
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