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

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
Seems like every alternative or co-existing physical diagnosis pwME commonly get given further down the line (hypermobility/ EDS, IBS, etc) is now being targeted as well (see also Esther Crawley's MUPPets talk), just in case we thought we could escape the psychiatric label and get proper treatment for at least some of our problems...

I flagged this book chapter in the MUPPets thread as well as in this thread:

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

JamBob

Senior Member
Messages
191
I was puzzling about why hypothyroidism would be on that list. I suffer from a number on that list, hypothyroidism included (diagnosed long before ME/CFS).

Wessely's MUS narrative has infected endocrinology for some time. Here's the former head of the British Thyroid Association and well regarded expert on thyroid disease Professor Weetman lecturing the American Thyroid Association on:

Challenges of Therapy Dissatisfaction with Thyroid Hormone and Somatization Disorder


https://vimeopro.com/thyroidvideos/american-thyroid-association-video-recordings/video/97982033
 

MEMum

Senior Member
Messages
440
Last edited:

MEMum

Senior Member
Messages
440
Their brief conclusion ends with:
"The Neuroconnective model is a proposal under research that may be useful for clinical practice. Nevertheless, new basic and clinical research on this reviewed association is manda‐ tory because it might open new ways to assess, to understand, and to treat our patients."


:bang-head::bang-head::bang-head::bang-head::mad::mad::mad::mad::mad:!
 

dangermouse

Senior Member
Messages
430
Messages
2,125
I heard this being discussed on a radio show a while ago:

http://www.dailymail.co.uk/health/article-4362126/Type-2-diabetes-not-real-illness-says-doctor.html

"Type 2 diabetes should be renamed 'walking deficiency syndrome' because it is not a 'real disease', according to one of Britain's leading medical practitioners."

another syndrome, another MUS?

Is this where it all came from?
Integrated care – Rethink the American Way?

https://www.networks.nhs.uk/nhs-net...the-emmhcn-site/701633991?b_start=0#316775760
 

Skycloud

Senior Member
Messages
508
Location
UK
I heard this being discussed on a radio show a while ago:

http://www.dailymail.co.uk/health/article-4362126/Type-2-diabetes-not-real-illness-says-doctor.html

"Type 2 diabetes should be renamed 'walking deficiency syndrome' because it is not a 'real disease', according to one of Britain's leading medical practitioners."

I've noticed there is a persistant negative attitude (UK) about diabetics, type 2 usually but it gets muddled, put together with fat shaming and the idea that there are people who 'bring it on themselves and then expect the rest of us to pay for it'. It seems more obvious to me these days.

Oh dear, we are witnessing some bizarre history making times.

I agree. A lot of people are going to suffer

I wasn't really aware of the significance of MUS and it's creep in policy in the UK.
Thanks @Dx Revision Watch
 
Last edited:
Messages
13,774
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?

I think it's difficult to see how a network for 'managing' MUS patients will not be worse than nothing. The people working in this area keep showing themselves up!
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
This seems to be from Spain/France how closely does this list of conditions map onto U.K. MUS agenda?

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.
.

I don't have the reading energy for the whole thread so apologies if a comprehensive list of UK MUS conditions has been given earlier.
 

SamanthaJ

Senior Member
Messages
219
Has anyone come across a comprehensive list of which conditions are now lumped into the MUS agenda?

I'm collecting evidence for this related thread http://forums.phoenixrising.me/inde...s-mus-epistemic-injustice-the-evidence.51677/

Conditions I'm aware of include CFS, fibromyalgia, EDS, POTS, gynaecology issues, IBS, Gulf War Syndrome

I heard some mention of asthma. What about things like lupus? Lyme?
I've seen asthma mentioned more than once, which is baffling. Is it because it looks a bit like panic, or causes (rational) panic? Not a justification, just trying to understand their weird logic. Interstitial cystitis is mentioned fairly often, despite being generally accepted as biological.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
In my search I just saw this

"Although our disease-based diagnosis system dictates excluding organic disease to diagnose MUS, much exclusion can occur clinically without recourse to laboratory or consultative evaluation because the majority of patients are mild. Only the less common, “difficult” patients with moderate and severe MUS require investigation to exclude organic diseases. By explicitly diagnosing and labeling all severity levels of MUS, we propose that this diagnostic approach cannot only facilitate effective treatment but also reduce the cost and morbidity from unnecessary interventions."
Classification and Diagnosis of Patients with Medically Unexplained Symptoms
https://link.springer.com/article/10.1007/s11606-006-0067-2

Does anyone have statistics on how many people die from MUS/PPS?!

This is a tragic personal story
http://blogs.bmj.com/bmj/2016/08/25/lisa-steen-the-wilderness-of-the-medically-unexplained/
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
I've seen asthma mentioned more than once, which is baffling. Is it because it looks a bit like panic, or causes (rational) panic? Not a justification, just trying to understand their weird logic. Interstitial cystitis is mentioned fairly often, despite being generally accepted as biological.
I actually find asthma less baffling than some of the others as it is something that is perceived to get worse with stress.

Also remember that the name Medically Unexplained Symptoms is a bit of a distraction. The standard understanding of those words is not really what this agenda is about.

I expect if you picked 5 random nonMUS conditions and 5 MUS conditions you wouldn't find they are any less well explained biologically.
 

SamanthaJ

Senior Member
Messages
219
August 2008 Special Report co-authored by Javier Escobar, MD, and Humberto Marin, MD, for Psychiatric Times: Unexplained Physical Symptoms What’s a Psychiatrist to Do?

Dr Escobar was a member of the DSM-5 Task Force and served as Task Force liaison to the Somatic Symptom Disorders Work Group

...

In Table 1, under the heading “Functional Somatic Syndromes (FSS)” Escobar and Marin list:

Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple chemical sensitivity, Nonspecific chest pain, Premenstrual disorder, Non-ulcer dyspepsia, Repetitive strain injury, Tension headache, Temporomandibular joint disorder, Atypical facial pain, Hyperventilation syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain, Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome, Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness, Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast infection, Total allergy syndrome.
@Jenny TipsforME, this list is from somewhere a lot further up this thread.
 

Chrisb

Senior Member
Messages
1,051
Looking at some of these lists, I think we're going to run out of non-MUS conditions pretty soon.

Well I suggest that they should add polio to the list. On another thread there was a paper relating to an outbreak in Edinburgh in about 1960. It indicated that for every clinical case of Type 1 polio there were 140 asymptomatic carriers. Has it been explained why so few go on to develop the disease?