MUS, PPS services and IAPT integration into NHS primary care - what's happening across the UK?

[MEisnotMUPS]

Please everyone, sign if you can https://meisgeensolk.petities.nl/?locale=en

Dutch Health Council (writing advisory report on ME to Parliament) put on its committee
Rosmalen (and as Suzy points out, see post above, she is one of the Wessely-school / EAPM/ BPS proponents, has worked for years with Creed, Fink, White etc) Before Euronet-SOMA (which she is part of, she was part of Eurasmus: https://web.archive.org/web/20160310191845/http://eurasmus.net/
(a european "MUS" collaboration that started a decade ago created by Creed, and also included Fink, White, Rosmalen, Knoop and other members now in Euronet-SOMA)

Knoop is also on Dutch health council. He and Bleijenberg wrote the famous "where to PACE from here" commentary (with exaggerated claims about recovery) published next to PACE trial paper in 2011, and is now involved in FITNET-NHS with Crawley.

Another member wrote a MUS GP guideline, in which CFS is seen as "undifferentiated somatoform disorder"

The Wessely-school European "MUS" movement has been building for years, hijacking ME and putting it in the MUS box, promoting its non-evidence based BPS hypothesis and related CBT/GET as treatments for ME

it is hampering all progress.

We need your help
https://meisgeensolk.petities.nl/?locale=en

 

[MEisnotMUPS]

June 30th

PLENARY SESSION 2 "The aetiology of functional somatic syndromes: lumpers, splitters and lifelines" PROF. CREED & PROF. ROSMALEN
"How to treat Bodily distress Syndrome / functional somatic syndromes. Results from a highly specialised university clinic" PROF. FINK

 

[Dx Revision Watch]

June 30th

PLENARY SESSION 2 "The aetiology of functional somatic syndromes: lumpers, splitters and lifelines" PROF. CREED & PROF. ROSMALEN
"How to treat Bodily distress Syndrome / functional somatic syndromes. Results from a highly specialised university clinic" PROF. FINK

I missed that one, thanks.

 

[SamanthaJ]

My guess is EDS and hypermobility are relatively easy pickings because so few doctors understand it. If they can move in on hypermobility, something so obviously physical, then what's to stop them making similar claims about conditions like arthritis, MS etc in future? I'm sure that must be the plan. They really seem to think everything's anxiety. Or they want other people to think so, at any rate.

 

[Countrygirl]

we suggest a new Neuroconnective phenotype in which together around a common core Anxiety-Collagen hyperlaxity, it includes five dimensions: behavioral, psychopathology, somatic symptoms, somatosensory symptoms, and somatic illnesses.

Somatic illnesses include irritable bowel, dysfunctional esophagus, multiple chemical sensitivity, dizziness or unsteadiness (central vestibular pattern), chronic fatigue, fibromyalgia, glossodynia, vulvodynia, hypothyroidism, asthma, migraine, temporomandibular dysfunction, and intolerances or food and drug hypersensitivity. It is envisaged that new descriptions of anxiety disorders and also of some psychosomatic conditions will emerge and different nosological approaches will be required.

Have they lost their grip on reality?

Anxiety-Collagen hyperlaxity, ??? How does that work?

What are they trying to say?

Hypothyroidism is a somatic illness???.........let alone all the others.

These people clearly do not inhabit our universe.

Mind boggling nonsense.

 

[Molly98]

Here is more from the presenter et al:

https://www.intechopen.com/books/a-...chosomatics-the-new-neuroconnective-phenotype

Chapter 8

Joint Hypermobility, Anxiety, and Psychosomatics — The New Neuroconnective Phenotype

By Guillem Pailhez, Juan Castaño, Silvia Rosado, Maria Del Mar Ballester, Cristina Vendrell, Núria Mallorquí-Bagué, Carolina Baeza- Velasco and Antonio Bulbena
DOI: 10.5772/60607

Abstract: In this chapter, after summarizing the concept and diagnosis of the Joint Hypermobility (Hyperlaxity), we review case control studies in two directions: Anxiety in Joint Hypermobility and Joint Hypermobility in Anxiety disorders, studies in nonclinical samples, review papers, and one incidence study. Collected evidence tends to confirm the strength of the association described two and a half decades ago. Common mechanisms involved include genetics, autonomic nervous system dysfunctions, and interoceptive and exteroceptive processes. Considering clinical and nonclinical data, pathophysiological mechanisms, and present nosological status, we suggest a new Neuroconnective phenotype in which together around a common core Anxiety-Collagen hyperlaxity, it includes five dimensions: behavioral, psychopathology, somatic symptoms, somatosensory symptoms, and somatic illnesses. Somatic illnesses include irritable bowel, dysfunctional esophagus, multiple chemical sensitivity, dizziness or unsteadiness (central vestibular pattern), chronic fatigue, fibromyalgia, glossodynia, vulvodynia, hypothyroidism, asthma, migraine, temporomandibular dysfunction, and intolerances or food and drug hypersensitivity. It is envisaged that new descriptions of anxiety disorders and also of some psychosomatic conditions will emerge and different nosological approaches will be required.

Keywords: Anxiety disorders, joint hypermobility, hyperlaxity, psychosomatic medicine, phobic disorders

Full chapter is Open Access

Sorry , but what complete NOBS, and that s the mildest word I can come up with to describe them.

How many people with EDS joint hypermobility suffer from POTS?

How many uneducated, naive or in some cases uninterested and unprofessional doctors misdiagnose POTs as anxiety?

Heart rate goes up when standing - "hmmm they must have an anxiety about standing then". NOBS NOBS and Thrice NOBS

My dickhead tolerance has finally worn out over the past couple of days

 

[Countrygirl]

Sorry , but what complete NOBS, and that s the mildest word I can come up with to describe them.

How many people with EDS joint hypermobility suffer from POTS?

How many uneducated, naive or in some cases uninterested and unprofessional doctors misdiagnose POTs as anxiety?

Heart rate goes up when standing - "hmmm they must have an anxiety about standing then". NOBS NOBS and Thrice NOBS

My dickhead tolerance has finally worn out over the past couple of days

Do excuse the way we local yokels here call a spade a shovel.

Brilliant @Molly98! I just love your delicate turn of phrase.

 

[Ysabelle-S]

I think, basically, the whole thing is now a huge racket. It's that, or stupidity and/or gullibility is now a prerequisite for medical school or studying psychology. The main thing that bugs me is that well and largely non-disabled people are sticking us all under a metaphoric microscope to see what is wrong with us and their perceptions of what is wrong with us are hugely rooted in widespread societal prejudices against the ill and disabled, prejudices that medical training or studying psychology appear to leave untouched at best, or even magnify at worst. Especially if there's a career to be made out of exploiting these prejudices. Their constant attempts to treat us as psychologically flawed are just another manifestation of long-held beliefs about the ill. There is a really nasty whiff coming off this BPS crowd. What all these illnesses need is proper biomedical research and better funding, but some of the so-called professionals who've hitched a ride on our backs are not actually qualified to treat these diseases. They'll be out of a job come the time science moves on.

 

[dangermouse]

Have they lost their grip on reality?

Anxiety-Collagen hyperlaxity, ??? How does that work?

What are they trying to say?

Hypothyroidism is a somatic illness???.........let alone all the others.

These people clearly do not inhabit our universe.

Mind boggling nonsense.

What the hell! Have we stumbled upon a bizarre parallel universe? This is pretty unsettling.

 

[dangermouse]

Here is more from the presenter et al:

https://www.intechopen.com/books/a-...chosomatics-the-new-neuroconnective-phenotype

Chapter 8

Joint Hypermobility, Anxiety, and Psychosomatics — The New Neuroconnective Phenotype

By Guillem Pailhez, Juan Castaño, Silvia Rosado, Maria Del Mar Ballester, Cristina Vendrell, Núria Mallorquí-Bagué, Carolina Baeza- Velasco and Antonio Bulbena
DOI: 10.5772/60607

Abstract: In this chapter, after summarizing the concept and diagnosis of the Joint Hypermobility (Hyperlaxity), we review case control studies in two directions: Anxiety in Joint Hypermobility and Joint Hypermobility in Anxiety disorders, studies in nonclinical samples, review papers, and one incidence study. Collected evidence tends to confirm the strength of the association described two and a half decades ago. Common mechanisms involved include genetics, autonomic nervous system dysfunctions, and interoceptive and exteroceptive processes. Considering clinical and nonclinical data, pathophysiological mechanisms, and present nosological status, we suggest a new Neuroconnective phenotype in which together around a common core Anxiety-Collagen hyperlaxity, it includes five dimensions: behavioral, psychopathology, somatic symptoms, somatosensory symptoms, and somatic illnesses. Somatic illnesses include irritable bowel, dysfunctional esophagus, multiple chemical sensitivity, dizziness or unsteadiness (central vestibular pattern), chronic fatigue, fibromyalgia, glossodynia, vulvodynia, hypothyroidism, asthma, migraine, temporomandibular dysfunction, and intolerances or food and drug hypersensitivity. It is envisaged that new descriptions of anxiety disorders and also of some psychosomatic conditions will emerge and different nosological approaches will be required.

Keywords: Anxiety disorders, joint hypermobility, hyperlaxity, psychosomatic medicine, phobic disorders

Full chapter is Open Access and there is also aPDF.

I'm finding this freakishly unbelievable! Am I in some kind of horrible vivid nightmare?

 

[Ysabelle-S]

Somatic illnesses include irritable bowel, dysfunctional esophagus, multiple chemical sensitivity, dizziness or unsteadiness (central vestibular pattern), chronic fatigue, fibromyalgia, glossodynia, vulvodynia, hypothyroidism, asthma, migraine, temporomandibular dysfunction, and intolerances or food and drug hypersensitivity. It is envisaged that new descriptions of anxiety disorders and also of some psychosomatic conditions will emerge and different nosological approaches will be required.

What a little empire they're building for themselves there. Lots of jobs for the girls and boys, and lots of university/research funding.

 

[lilpink]

My guess is EDS and hypermobility are relatively easy pickings because so few doctors understand it. If they can move in on hypermobility, something so obviously physical, then what's to stop them making similar claims about conditions like arthritis, MS etc in future? I'm sure that must be the plan. They really seem to think everything's anxiety. Or they want other people to think so, at any rate

They are already doing this. When are people going to realize that the construct of MUS is intended to be rolled out to any member of the population? Anyone, anywhere at any point in time can now be given a MUS dx.

 

[dangermouse]

They are already doing this. When are people going to realize that the construct of MUS is intended to be rolled out to any member of the population? Anyone, anywhere at any point in time can now be given a MUS dx.

That's awful.

 

[SamanthaJ]

They are already doing this. When are people going to realize that the construct of MUS is intended to be rolled out to any member of the population? Anyone, anywhere at any point in time can now be given a MUS dx.

I always wonder what these people think when they're ill themselves...probably they are blessed with excellent health, so this never arises.

Still, the more they 'branch out', the more patient groups to oppose them. There probably needs to be an organised coalition of chronic illness groups to fight this.

It's incredible that the medical world even tolerates this nonsense. The language may have changed but the ideas seem 100 years old.

 

[Skycloud]

Part of me is wondering if things could turn, if they're just making a rope to hang themselves with. I really hope so.

Oh just bring back the leeches, at least you know where you are with a leech.

 

[Dx Revision Watch]

That is really strange (in a good way) that a political party refers to MUS issues in its manifesto.

Why are the other parties so in bed with the MUS specialists.

The Women's Equality Party is a relatively new minority political party that holds no seats. It is fielding a single candidate in Shipley in the June 8 snap General Election.

MUS services (and CBT) have been "sold" to government health agencies and to commissioners as a means of saving the NHS £millions, on the basis of:

reducing demand for GP appointments by "frequent attenders";
fewer referrals for tests and investigations;
reduction in GP referrals to secondary specialists;
decommissioning of costly, separate services for chronic pain, CFS ME, FM and LTCs (long-term conditions) and replacing specialist services with MUS or PPS services;
by making funding available to develop new IAPT services or to extend existing integrated IAPT to deliver CBT in the community and in primary care settings to "frequent attenders", "MUS" and so-called "FSSs" patients and those with LTCs, thereby reducing demand on specialist referrals and services.

 

[Dx Revision Watch]

They are already doing this. When are people going to realize that the construct of MUS is intended to be rolled out to any member of the population? Anyone, anywhere at any point in time can now be given a MUS dx.

Or a dx of DSM-5's SSD.

 

[E.Reinhold]

They are already doing this. When are people going to realize that the construct of MUS is intended to be rolled out to any member of the population? Anyone, anywhere at any point in time can now be given a MUS dx.

Not on my watch.

 

[E.Reinhold]

I always wonder what these people think when they're ill themselves...probably they are blessed with excellent health, so this never arises.

Still, the more they 'branch out', the more patient groups to oppose them. There probably needs to be an organised coalition of chronic illness groups to fight this.

It's incredible that the medical world even tolerates this nonsense. The language may have changed but the ideas seem 100 years old.

Spotlight on.
I'm coordinating EDS MCAS and POTS organisations- obviously linked conditions which commonly cause profound chronic fatigue. A toolkit for the RCGP website is under construction now. Clinicians who 'get it' are getting organised.
In my Polyanna moments, I envision all of these 'MUS' services setting up around the place, then educating the clinicians in them to recognise EDS MCAS POTS and thereby instantly creating multidisciplinary teams for diagnosis and management of EDS MCAS POTS! I'm going to be contacting some of the key MUS GPs soon. High stakes game, but it might just work...
Cloud/silver lining?

 

[lilpink]

I always wonder what these people think when they're ill themselves...probably they are blessed with excellent health, so this never arises.

Or blessed with private health insurance paid for by salaries predicated on the purveyance of junk science.