Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care, 2025, Cupit

Clinical trials cannot account for, or control for, such diverse social challenges or the individual neurobiology that may be involved in addressing them.
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If it can be done in the clinic, then it can be done in a clinical trial.

It's just an excuse for the lack of effect, which reveals that the clinic has little to offer beyond fulfilling the desire to receive treatment, be listened to, etc.

Also, if they were good at actually understanding the psychology of chronic illness they would understand that what they consider "chronicity rethoric" is part of the adaptation to the illness that has the function of allowing people to live better with the illness. To manage a problem you must be aware of it, understand the risks and challenges associated with it and have realistic view of what is possible and what is not. That these things are considered a negative attitude reveals that these people are seriously underestimating the illness.

A bit of humilty would do them good. Patients live with the illness every day and often had many years to learn about all the intricate details of it (including "diverse social challenges" and "individual neurobiology").
 
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InitialConditions said:
Garner's a big fan of this paper

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It's a small detail that I missed, though it really speaks to how absurd these people are, that the part quoted by Garner mentions how we exclusively fund "pharmaceutical research". Now, I'm pretty sure that the authors of this sad excuse for a paper know that this is false, and that Garner does too. They know what pharmaceutical research means, which is the research, development and testing of new drugs, and that it is not the same thing as doing basic biomedical research, which is what we mainly fund, and is in fact the bulk of research (by funding, though not volume, since BPS garbage is cheap).

But they say this to sort of hint like we side with the powerful pharmaceutical industry, which has so far explicitly refused to even try, mainly because they literally cannot do anything until a biological target is identified by basic biomedical research, while they are the smol bean underdogs fighting for the little guy, only to be beaten back by the big bad patient lobbies working in tandem with giant corporate interests. Or whatever. Pure fantasy.

Their lies are so absurdly over-the-top that it more closely resembles the sewers of the internet than anything having to do with academia. Our civilization is collapsing under all the lies and corruption, so much that it has so thoroughly infected even the medical profession, where egregious lies are rewarded. Our species is really heading strong towards self-collapse, and biopsychosocial medicine and 4chan are two prongs of the horseshoe politics regressing health care.
 
rvallee said:
It's a small detail that I missed, though it really speaks to how absurd these people are, that the part quoted by Garner mentions how we exclusively fund "pharmaceutical research". Now, I'm pretty sure that the authors of this sad excuse for a paper know that this is false, and that Garner does too. They know what pharmaceutical research means, which is the research, development and testing of new drugs, and that it is not the same thing as doing basic biomedical research, which is what we mainly fund, and is in fact the bulk of research (by funding, though not volume, since BPS garbage is cheap).

But they say this to sort of hint like we side with the powerful pharmaceutical industry, which has so far explicitly refused to even try, mainly because they literally cannot do anything until a biological target is identified by basic biomedical research, while they are the smol bean underdogs fighting for the little guy, only to be beaten back by the big bad patient lobbies working in tandem with giant corporate interests. Or whatever. Pure fantasy.

Their lies are so absurdly over-the-top that it more closely resembles the sewers of the internet than anything having to do with academia. Our civilization is collapsing under all the lies and corruption, so much that it has so thoroughly infected even the medical profession, where egregious lies are rewarded. Our species is really heading strong towards self-collapse, and biopsychosocial medicine and 4chan are two prongs of the horseshoe politics regressing health care.
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Not to mention that Vogt & Co tried to get the cyclo study cancelled, and that so far, every application for funding for Dara p2 has been turned down.

And Wyller got 12M NOK (~half of Dara p2’s budget) for his off-brand LP + Nicotinamide Ribosine for LC study (MINIRICO).
 
Hoopoe said:
If it can be done in the clinic, then it can be done in a clinical trial.

It's just an excuse for the lack of effect, which reveals that the clinic has little to offer beyond fulfilling the desire to receive treatment, be listened to, etc.
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There's a deeper, and funnier, though in a very bad way, implication of this weak argument, and it's: then why bother doing trials at all? Because for years when the fake trials they set up were accepted as indisputable, well, they were indisputable. It wasn't them simply saying that (it totally was), they had trials proving it (and you should just ignore the fact that the assertions predated the trials by many years). I certainly agree that pragmatic trials like this are entirely useless, but for very different reason than they are pretending to argue here.

So, now those trials cannot cover the complexity of the factors involved. From one side of the monster's mouth, out the other it's the same old BS about some trials proving it, and always needing more and more of them, to infinity and beyond. So, then, why do those clinical trials at all? Because they are basically 80-90% of what they do. And, sure enough, they are incompetent at proving or informing about anything, but that's entirely by choice. The same kind of choice that made Uri Geller only "bend" spoons he brought himself, made of a special alloy that softens on contact with body temperature. And, because it's a fitting comparison, when he was exposed by Jonny Carson, who asked him to bend normal spoons, his popularity actually rose. Didn't change a thing. Despite James Randi offering $1M for such a demonstration.

Anyway, these people don't even believe in their arguments so it doesn't really matter that they contradict themselves, yet again, but it's still absurd how total the collapse of their systems are, not only completely incapable of solving such problems, but incapable of adjusting to failed outcomes, working instead to cover things up as long as they can get away with, and just generally lying about everything they do and why.
 
rvallee said:
It's a small detail that I missed, though it really speaks to how absurd these people are, that the part quoted by Garner mentions how we exclusively fund "pharmaceutical research". Now, I'm pretty sure that the authors of this sad excuse for a paper know that this is false, and that Garner does too. They know what pharmaceutical research means, which is the research, development and testing of new drugs, and that it is not the same thing as doing basic biomedical research, which is what we mainly fund, and is in fact the bulk of research (by funding, though not volume, since BPS garbage is cheap).
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In terms of ‘us and them’, in so much as there are coherent groups making up ‘us and them’, rather it is them that exclusively research treatment and make no meaningful attempts at evaluating their etiological beliefs. We would like treatment but we also want an evidenced understanding of our underlying condition.

Indeed the main unifying factor for ‘them’ is the belief that psycho behavioural interventions can cure us if only we would be well behaved and do what we are told, and that this is a self evident truth that needs no evaluation. Research is only needed to tweak the finer detail of that intervention.
 
Dolphin said:
Fibromyalgia is a leading cause of disability in the UK and worldwide, but is difficult to diagnose and treat due to unclear pathogenesis and diverse and fluctuating symptoms.
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Actually, it is not difficult to diagnose.

Edited:
My n=1....Labs done to rule out autoimmune diseases (I had a very high ANA but no s/s of lupus or any other systemic disorder) and voila, the fibromyalgia syndrome as my collection of early symptoms fit under, diagnosis made by rheumatologist, clinical professor at UCSF, a teaching hospital and tertiary medical center in San Francisco.

All it took was rule out labs, listing symptoms---15 minutes to diagnose.

Treatment? The doc said "heat, heat, heat." Yup, that's still true today, 29 year later (plus tizanidine, sleep meds, occasional benzo for extreme flares, pacing, decreasing stress.

**Unlike ME/CFS where there is a chance of recovery early after onset, FM is lifelong. Does not have a recovery. So therefore the above research paper is pablum nonsense.
 
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Kiristar said:
What I find scary is the wholesale concerted effort to discredit biomedical research into these conditions per se. It's a sinister self interested money grab at the expense of patients lives.
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I think this is our greatest threat, that they manage to so impoverish and discourage biological research that it effectively stops.

It is not clear that there is currently a sufficiently robust bio research stream that can withstand this relentless war on technical and ethical standards by the psychosomatic cult.
 
Utsikt said:
Maybe we should stop giving the authors benefits (grants and employment) and stop assuming that they are scientists just because they and their friends say they are. They seem awfully confused about themselves, and it appears to be spreading when they talk about it. Luckily, I know some people that can help them with their unhelpful beliefs and behaviours.
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I think that is a very important point indeed actually

I don't know whether (and we should look up each of these to check, along with also checking whther for example they are part of or making money from eg 'insurance medicine' type things) these individuals are tenured or are on fixed term contracts - these differences place them in very different positions

But there is an issue of tenure combined with the change from the old RAE which had more objective methods for assessing standards of research output vs what changed in the REF and various iterations focusing more on a peer-based assessment and aspects such as citations being introduced (don't upset those you need to cite you) and impact which focused on external engagement and it being understood by and sold to 'the pubilc'.

So keeping up ones research as part of their supposed KPI to keep their job, in a workload model that is normally eg 40/40/20 (research/teaching/admin assignments) becomes a pretty different thing if you think about how there is 'being good' vs the jobsworthness required to basically not be able to be sacked in something which is as secure as a tenure.

But also the technical aspects of how someone would have to be either sacked (or hired in the case of those not in tenure yet and stuck on fixed term contracts) often involve panels that are academics who are peers and people higher up said hierarchy in your area when you are an academic, not the usual HR + boss type thing, so that is worth also looking into. Because you know where peer review comes from and that's an issue if people being able to get and hold onto a job that is fluid and hectic involves being astute as to who you need to not upset etc.
 
Cupit presentation 6-caroline-cupit-presentation-pdf
2024

“Opportunities for cost-effective care
• Biopsychosocial services should reduce expensive medical consultations
• Shorter waits, fewer battles against the system, & fewer futile interventions promotes greater wellbeing (less stress) leading to greater self-care & ability to manage and/or recover
• Reduced need for, and harms of, pharmaceuticals*
• Reduced sickness and need for welfare benefits*
*But quality, non-pressurising support is required. Threats (e.g. of effecal of medications or benefits are likely to have the opposite  OXFORD PRIMARY CARE
HEALTH SCIENCES
Summary
• We have developed some Guiding Principles for
Fibromyalgia Services
- Co-designed with patients and 'innovator' services
- Illustrative Bus Infographic
• Guiding principles provide a framework for service developers & commissioners”
 

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What is sad about this is that neutral ethnographic research would have been a valuable contribution. We only really have occasional anecdotal patient reports as to what goes on in these clinics. If the authors had simply recorded what was being done and reported on it - or, even better, if they had actually assessed what was being done for hard evidence of robustness and efficacy - that would have been a useful contribution. Instead they chose to associate themselves with their "informants"' risible and patient-blaming explanations for why they cannot document evidence of effectiveness, their offensive views, and with pseudoscience.

Something that I did learn from their paper is that successful complaints to the Advertising Standards Authority do cause NHS commissioners to re-evaluate their use of pseudoscientific programmes:
However, the ASA ruling led NHS commissioners to demand substantial changes to the programme (e.g., removing references to "recovery") that its developers considered too undermining of the programme (as well as costly and onerous to implement). At the time of writing, the developers have withdrawn the programme for NHS patients.
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That was a very useful piece of information. The ASA ruling in question appears to have been this one (link).
 
Cinders66 said:
Cupit presentation 6-caroline-cupit-presentation-pdf
2024

“Opportunities for cost-effective care
• Biopsychosocial services should reduce expensive medical consultations
• Shorter waits, fewer battles against the system, & fewer futile interventions promotes greater wellbeing (less stress) leading to greater self-care & ability to manage and/or recover
• Reduced need for, and harms of, pharmaceuticals*
• Reduced sickness and need for welfare benefits*
*But quality, non-pressurising support is required. Threats (e.g. of effecal of medications or benefits are likely to have the opposite  OXFORD PRIMARY CARE
HEALTH SCIENCES
Summary
• We have developed some Guiding Principles for
Fibromyalgia Services
- Co-designed with patients and 'innovator' services
- Illustrative Bus Infographic
• Guiding principles provide a framework for service developers & commissioners”
Click to expand...
No wonder this country is virtually bankrupt when people are paid to produce things like this. Just imagine if instead they spent the money developing some decent painkillers.
As for the harm caused by "chronicity rhetoric". I developed ME back when the medical profession just denounced everyone with it as lazy hypochondriacs. Nobody mentioned chronicity, because apparently ME didn't even really exist. I still didn't recover though.
There are far too many third rate psychologists who are in search of a role, and can't stop interfering with illnesses they just don't understand. Curiously there are massive waiting lists to see a psychologist, for people with actual mental health issues.
 
Nightsong said:
Something that I did learn from their paper is that successful complaints to the Advertising Standards Authority do cause NHS commissioners to re-evaluate their use of pseudoscientific programmes:

That was a very useful piece of information. The ASA ruling in question appears to have been this one (link).
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That’s interesting! Maybe something to keep in mind for certain apps that are under development..
 
Another false statement in this "research" paper (First being that FM is hard to diagnose):

That recovery and improvement from FM are possible. Recovery, no. It is lifelong (chronic). That has been established fact by rheumatologists thousands (5000 for Dr. Robert Bennett of Oregon Health Sciences Center) for the rest of their lives. I've read that about a third of patients improve in FM.

Acceptance of one's illness is a long journey. And a necessity. Otherwise you make your symptoms worse and your pain goes from a 6/10 to an 8/10 and that feels like a logyrithmic increase. Or you are too active and have PEM episodes lasting months.

So, telling patients that recovery and improvement are possible---well, it's treating the patient like a child. Tell the damn truth. Sugar-coated lies.

Baby blanket statements couched as truths, when not.



edited 7/17/25 10:54 PST
 
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Cinders66 said:
Cupit presentation 6-caroline-cupit-presentation-pdf
2024

“Opportunities for cost-effective care
• Biopsychosocial services should reduce expensive medical consultations
• Shorter waits, fewer battles against the system, & fewer futile interventions promotes greater wellbeing (less stress) leading to greater self-care & ability to manage and/or recover
• Reduced need for, and harms of, pharmaceuticals*
• Reduced sickness and need for welfare benefits*
*But quality, non-pressurising support is required. Threats (e.g. of effecal of medications or benefits are likely to have the opposite  OXFORD PRIMARY CARE
HEALTH SCIENCES
Summary
• We have developed some Guiding Principles for
Fibromyalgia Services
- Co-designed with patients and 'innovator' services
- Illustrative Bus Infographic
• Guiding principles provide a framework for service developers & commissioners”
Click to expand...
Like I keep saying, without science, the rest of health care is pretty much on the same level as business consulting. Especially delusional business consulting, to be fair. Plus, they're both very expensive and super cheap. Anyone showing graphics like this is not being serious about what they're doing, know that they pretty much get paid even if their presentation is poop in a bag. And it might as well be.

You obviously cannot be cost-effective when you are not effective at all, the whole idea is delusional. They keep talking about opportunities and potential, despite having decades to show anything and they haven't delivered a damn thing. This is QAnon level of delusional.
 
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Apparently, everything can pass as evidence for conditions we don’t understand.

The point about punitive systems is interesting - it deviates from the usual secondary gains rhetoric.
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But here we can see why they didn’t want to go for sticks, they believe it works better to gaslight them with «non-pressurising support» to induce compliance.
 
Surprisingly, MEA have commented on this:
This paper, from a group of health researchers at various universities, relates to fibromyalgia. However, it includes some critical comments about the way in which the MEA highlights very poor recovery rates as an important reason for raising money to carry out biomedical research into finding the cause/s of ME/CFS along with safe and effective forms of treatment that are targeted at the underlying disease process. We make no apologies for doing so and we do not agree that proving accurate information about poor recovery rates for ME/CFS inhibits patient recovery.
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The paper states that the money we raise for research is ‘almost exclusively' spent on pharmaceutical research. This is not correct. The vast majority of our research funding is spent on research relating to diagnostic biomarkers, causative factors – including post mortem research – and all the basic running costs of the ME Biobank. We do occasionally fund clinical trials into drug treatment, including the current LDN trial. But this only represents a very small proportion of our research expenditure over the years.
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https://meassociation.org.uk/2025/0...ery-programmes-to-the-regulatory-authorities/
 
Utsikt said:
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Apparently, everything can pass as evidence for conditions we don’t understand.

The point about punitive systems is interesting - it deviates from the usual secondary gains rhetoric.
View attachment 27079
But here we can see why they didn’t want to go for sticks, they believe it works better to gaslight them with «non-pressurising support» to induce compliance.
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Well this about says it all, drastically reduce the criteria for what constitutes meaningful evidence so we can do what we want and then we will claim to save you money, though no one will evaluate the costs arising from that treatment no working or even causing further harm.
 
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