Esther12
Senior Member
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- 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:
They say:
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:
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.
They say:
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:
Is there any evidence of efficacy? Do we really want GPs feeling more confident with their attempts to tinker with patient's subconscious?
They might not really get worse, but just be desperate to tick DWP's increasingly crazy tick-box criteria:
I've no idea what the Durham Wrap is - apparently it works.
Thought for commissioners: stop funding services if they're no more effective than a placebo.
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