A sure sign, if we needed one, that the paper is unscientific, prejudiced rubbish.
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Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care, 2025, Cupit
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Nightsong
Senior Member (Voting Rights)
Two more thoughts:
To what extent is it appropriate, in a supposedly scientific paper, to give your "informants" space to complain about an organisation - the MEA - that has nothing to do with the subject of your paper (supposedly fibromyalgia)? I haven't heard of any research team doing this before. If this had been a piece of mere journalism, they would have been afforded the right of reply. There have certainly been many problems with the MEA's direction of late but complaining about pseudoscience in NHS clinics is a valuable public service.
Secondly, I think Versus Arthritis and Fibromyalgia Action UK should be asked to what extent, if any, they associate themselves with the conclusions these "researchers" have drawn, and, if they do not, why it is that they are assisting them. I'm sure a number of FMAUK's members would not appreciate them associating themselves with the position that the benefits on which they depend are prolonging their illness.
To what extent is it appropriate, in a supposedly scientific paper, to give your "informants" space to complain about an organisation - the MEA - that has nothing to do with the subject of your paper (supposedly fibromyalgia)? I haven't heard of any research team doing this before. If this had been a piece of mere journalism, they would have been afforded the right of reply. There have certainly been many problems with the MEA's direction of late but complaining about pseudoscience in NHS clinics is a valuable public service.
Secondly, I think Versus Arthritis and Fibromyalgia Action UK should be asked to what extent, if any, they associate themselves with the conclusions these "researchers" have drawn, and, if they do not, why it is that they are assisting them. I'm sure a number of FMAUK's members would not appreciate them associating themselves with the position that the benefits on which they depend are prolonging their illness.
Hoopoe
Senior Member (Voting Rights)
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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rvallee
Senior Member (Voting Rights)
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.
Utsikt
Senior Member (Voting Rights)
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).
rvallee
Senior Member (Voting Rights)
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.
Peter T
Senior Member (Voting Rights)
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.
shak8
Senior Member (Voting Rights)
Actually, it is not difficult to diagnose.
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.
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”
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”
Attachments
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MatthiasRiem
Established Member (Voting Rights)
Illustrative Thrown-under-the-Bus Infographic...
Nightsong
Senior Member (Voting Rights)
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:
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).
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.
Utsikt
Senior Member (Voting Rights)
That’s interesting! Maybe something to keep in mind for certain apps that are under development..
shak8
Senior Member (Voting Rights)
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 treating hundreds of patients 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.
Did anyone writing this "research" actually read any of the references?
That recovery and improvement from FM are possible. Recovery, no. It is lifelong (chronic). That has been established fact by rheumatologists treating hundreds of patients 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.
Did anyone writing this "research" actually read any of the references?
rvallee
Senior Member (Voting Rights)
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.
rvallee
Senior Member (Voting Rights)
The wheels on the bus go thump-thump-thump, thump-thump-thump.
Utsikt
Senior Member (Voting Rights)
Yeah, that presentation wouldn’t pass at my job..
And doing a bad job actually has some consequences - the loss of future business.
Utsikt
Senior Member (Voting Rights)
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.
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.