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[trivial] Deary etc presentation @ Royal College of Physicians

Messages
13,774
I really dislike Deary, and think his videos on how to manage CFS patients are some of the vilest things I've seen in recent years. This will not be a fair reading of his presentation, but I thought I'd pull some bits out. Nothing very interesting, and here's a link to the whole thing in case anyone else is interested.

https://www.rcplondon.ac.uk/file/2177/download?token=pIT1Eu2Y

Part of the Persistent Physical Symptoms project.

There seems to be some desperate spin about at the moment to imply patients love the PPS terminology, eg:

A patients’ perspective:

like ‘physical’ more than ‘unexplained’

– …and is ‘unexplained’ really accurate or useful?

They say:

Our work is focusing on three PPS: Chronic Fatigue Syndrome (CFS),

Irritable Bowel Syndrome (IBS) and Fibromyalgia.

I wonder if their research will lead to them deciding they've really messed things up? Seems like there's some room for bias here:

Research Process

▪ Patient interviews
▪ GP interviews
▪ PPS Expert Interviews
▪ Expert Panel
▪ Thematic analysis, testing and sharing findings

I hope it was Deary who came up with 'existential narrowing': please don't let there be more than one person as terrible as him alive at the same point of time.

Symptoms over time

▪ Reduced tolerance to activity
▪ Limited repertoire of activities
▪ Decrease in general fitness
▪ Loss of muscle strength
▪ Sleep disruption and sequelae
▪ Alterations in mood
▪ Increase in symptoms
▪ Existential narrowing

They say:

Effective communication skills

– Helping people make sense of symptoms

...

Explaining Symptoms:

▪ An explanatory framework

for Functional Somatic
Symptoms in medical
consultations.

▪ Chris Burton, LaKrista Morton,
▪ Alison Elliott, Jen Cleland
▪ Ruth Thomas, Vincent Deary

Is that a new book? Google brought nothing up for it. Yipee - they've got a solid, evidence based explanation for out symptoms. The mystery is solved.

Their findings are not exciting. We can look forward to more stories:

Headline Findings

▪ Stories that endorse

reality of symptoms

▪ A biopsychosocial

framework for
explanation

– Pain, alarm and cats.

▪ One that leads to

action/management

▪ Longer consultations

We need to talk about symptoms

▪ One of the key themes emerging from our

research was the
challenge/difficulty/complexity/ of talking
about PPS symptoms.

▪ At key points along a patient’s pathway the

quality of this dialogue can shape
treatment trajectory and ultimately patient
outcomes.

Is there any evidence of efficacy? Do we really want GPs feeling more confident with their attempts to tinker with patient's subconscious?

Self efficacy challenge for clinicians
“You feel that helplessness, not in your
own skill, but in your own ability to
change something that has lots of facets
to it, including a subconscious facet” (GP)

They might not really get worse, but just be desperate to tick DWP's increasingly crazy tick-box criteria:

Organisational Factors

▪ 2. Benefits and Welfare System

– We’ve all seen it. Patients’ symptomatology

increases when they are coming up to a benefits
review. Whether this is unconscious or conscious
it happens. (Secondary Care Professional).

– The system unwittingly traps patients in a cycle of

benefits and illness. […] Yet, DWP have no idea of
the concept or the scale and cost of the problem.
(Secondary Care Professional).

I've no idea what the Durham Wrap is - apparently it works.

What works in secondary care?

▪ Multi-disciplinary teams & transdiagnostic

working

▪ The “Durham Wrap”
▪ The CRESTA (Clinics for Research & Service in

Themed Assessments) Fatigue Clinic

▪ Wider use of biopsychosocial approach across

disciplines such as rheumatology, neurology,
cardiology

▪ Strong links back to GP and Primary Care
▪ Support and training for staff

Thought for commissioners: stop funding services if they're no more effective than a placebo.

Thoughts for commissioners

▪ 20% of the population has a PPS associated with

a disability, and cost estimates are £3bn, yet
there is no mention of CFS/ME, FM, IBS, MUS or
PPS in local Joint Strategic Needs Assessment

▪ Current provision is dominated by access and

exclusion criteria. Our research found examples
of where a Fibromyalgia diagnosis can prevent
access to pain clinics, IAPTs and CFS/ME service

▪ Commissioning for symptoms or syndromes?
▪ Education/HENE
 

SOC

Senior Member
Messages
7,849
That was just for them, to share the findings that they want. From their interpretations of some interviews. Personally, I'd prefer it if they kept it to themselves.
Yeah, I noticed they didn't say 'sharing data' or 'sharing results'. They only want to share their findings, ie their conclusions, which may or may not be based on any actual facts. The PACE authors, for example, are happy to share their 'findings' (read: shove them down everyone's throats). They just don't want to have to explain where they got those findings from... on what they based their conclusions. :rolleyes:
 

SOC

Senior Member
Messages
7,849
20% of the population lol
Whoa, I missed that the first time.
20% of the population has a PPS associated with a disability, and cost estimates are £3bn
Is he saying 20% of the UK population gets some form of disability payment based on Persistent Physical Symptoms? :eek: When you add in the people with severe mental disabilities, disabling back injuries, quadraplegia, etc, etc, etc just what percentage of the UK population is on disability? 50%? More? This seems incredibly unlikely. I must be missing something.
 

Sidereal

Senior Member
Messages
4,856
Whoa, I missed that the first time.
Is he saying 20% of the UK population gets some form of disability payment based on Persistent Physical Symptoms? :eek: When you add in the people with severe mental disabilities, disabling back injuries, quadraplegia, etc, etc, etc just what percentage of the UK population is on disability? 50%? More? This seems incredibly unlikely. I must be missing something.

Well, we do have a sickening nanny state over here but the 20% figure must be referring to something else. Perhaps he means that 20% of the population have one or more MUS which can be disabling in some of those cases.
 

SOC

Senior Member
Messages
7,849
Well, we do have a sickening nanny state over here but the 20% figure must be referring to something else. Perhaps he means that 20% of the population have one or more MUS which can be disabling in some of those cases.
I'd buy that, but then what is the cost estimate related to if it's not disability services? o_O That's freakin' lot of money going somewhere.
20% of the population has a PPS associated with a disability, and cost estimates are £3bn
 
Messages
3,263
Aah, PPS... The game continues, of trying to find the best way to lie to patients. Would be nice to sit down and count the number of "scholarly" articles that have addresed the weighty issue of how to "package" a psychogenic diagnosis to make it "palatable" to us patients (i.e. so it sounds like we're being taken seriously when we're not).
 
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SOC

Senior Member
Messages
7,849
Aah, PPS... The game continues, of trying to find the best way to lie to patients. Would be nice to sit down and count the number of "scholarly" articles that have addreseds the weighty issue of how to "package" a psychogenic diagnosis to make it "palatable" to us patients (i.e. so it sounds like we're being taken seriously when we're not).
What a bunch of sickos... writing so-called academic pieces about how to lie to and manipulate sick people for fun and profit.
 
Messages
3,263
Generally, its very carefully worded to conceal the underlying theoretical framework. But there are still some gems from Deary and his mates:

Deary et al said:
We need to get better at working across disciplines working transdiagnostically and across mind-body. This is such an important conversation for the health service as a whole.

Deary et al said:
The system unwittingly traps patients in a cycle of benefits and illness. [...] Yet, DWP have no idea of the concept or the scale and cost of the problem. (Secondary Care Professional).
 

SOC

Senior Member
Messages
7,849
The system unwittingly traps patients in a cycle of benefits and illness. [...]
Show me one single benefit I've gotten from having ME. I get NO government supported healthcare. I get NO services of any kind -- shoppers, caregivers, helpers. I get NO disability payments. I get nothing. Instead of working as a professional with a six-figure salary, I'm stuck working at home part-time as a tutor to keep a roof over my head. I can no longer socialize, so I'm not even getting sympathy from friends. Where is the benefit here?

And yet I still have ME. I wonder how this crackpot explains that?

The self-righteous prejudice behind this thinking is shocking and disgusting. It's the kind of thing Trump would say if he was aware of us... which, thank goodness, he appears not to be.
 
Messages
3,263
Deary et al said:
The system unwittingly traps patients in a cycle of benefits and illness. [...] Yet, DWP have no idea of the concept or the scale and cost of the problem. (Secondary Care Professional).
In all psychogenic/biopsychosocial writing, there seems to be an obligatory line about how much these patients are costing. I think the advocates of this stuff are desperate to get more attention from the medical profession, and use the economic angle as part of their marketing strategy.

Its common to see statements about how costly MUPS or whatever are (resources, consulting time, benefits); its much rarer to see statements about how much suffering the patients endure. You can draw your own conclusions about that.
 
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user9876

Senior Member
Messages
4,556
In all psychogenic/biopsychosocial writing, there seems to be an obligatory line about how much these patients are costing. I think the advocates of this stuff are desperate to get more attention from the medical profession, and use the economic angle as part of their marketing strategy.

Its common to see statements about how costly MUPs or whatever are (resources, consulting time, benefits); its much rarer to see statements about how much suffering the patients endure. You can draw your own conclusions about that.

GPs are constantly moaning about the 'worried well' who fill up their waiting rooms and they probably associate MUPs with that. Of course if it didn't take 10 visits to get a GP to do the most basic things then they would have to deal with less appointments,
 
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3,263
@user9876, I agree. It makes total sense that illnesses we don't understand will take up more time than those that are readily diagnosed and easy to treat. Patients with "unexplained" illnesses are getting no treatment, no plausible explanation for what's wrong with them, so they keep looking for some kind of answer. Rather than find new ways to get rid of them, maybe we should be highlighting the importance of understanding what's at the bottom of these illnesses? That would save more time in the long run.
 

user9876

Senior Member
Messages
4,556
@user9876, I agree. It makes total sense that illnesses we don't understand will take up more time than those that are readily diagnosed and easy to treat. Patients with "unexplained" illnesses are getting no treatment, no plausible explanation for what's wrong with them, so they keep looking for some kind of answer. Rather than find new ways to get rid of them, maybe we should be highlighting the importance of understanding what's at the bottom of these illnesses? That would save more time in the long run.

With GPs in the UK its not just illnesses we don't understand its ones that they should be diagnosing but are ignoring.