MUS services in UK and other MUS related issues

Another thing that reads between the lines is that despite the hype it is clear that much of the time the treatment does not work. Moss-Morris talks of 'struggling' with MUS patients. Lahmann talks of the importance of changing patients' views in the first two weeks - the implication being that half the time it doesn't change and the patient is no better.

 

I am not sure that the patient is of any significance in this. It is the budget which is the determining factor. The patient merely gets in the way of the efficient expenditure of funds.

 

Doing a bit more digging on this systematic review done at Sheffield.
Coyne wrote a detailed blog about it in 2016
https://jcoynester.wordpress.com/20...rventions-for-medically-unexplained-symptoms/

it ends with this line
"Consumers and taxpayers are put at risk from biased evaluations of interventions which will undoubtedly affect health policy decisions."

It was discussed on PR (before my time)
https://forums.phoenixrising.me/threads/£208-000-of-taxpayers-money-for-a-group-incl-peter-white-rona-moss-morris-to-review-mus-evidence.39746/

eta: just picked up on the first MUS video with RMM (as mentioned by @Cinders66 ) she mentions the project in Sheffield.

 

I would draw attention to the closing remarks in the book Common Mental Disorders-a bio-social model by Goldberg and Huxley (1992). (CFS is clearly regarded as fitting the description.)

There is now an explosion of knowledge about mental disorder, and it at last becomes possible to discern the outlines of a model for mental disorder which takes account of findings in both social psychiatry and molecular biology. However we have not made corresponding progress in refining the administrative and architectural requirements for meeting the needs of the mentally ill, and in most countries of the world services for the mentally ill survive on the crumbs left from the banquet of general health care. At times of scarce resources our services are very easy to prune. The liberation of others-clinical psychologists, nurses and social workers- from domination by the medical profession has occurred in many countries and has been the enemy of a united service which offers the best to patients, and which commands adequate resources from society.

We seem now to have the Maudsley's grand plan. Whether patients want it or not.

 

Wrong kind of CBT apparently.

 

More on the bodily orientated psychotherapy mentioned
http://www.goodtherapy.org/learn-about-therapy/types/body-psychotherapy

Originating from fraud with repressed stuff manifesting as physical symptoms eg fatigue and pain

 

Seen in the context of somatoform disorder which the video moved from after starting as MUS, it’s easier to understand why the CFS patient voice is ignored because people who treat these conditions just routinely over ride the patient voice. Patients who refuse to engage with talking therapy or don’t respond well are seen as non compliant, people difficult to engage with, people resistant to sensible ideas about the connection between mind and body. Even the head of MH guy was aware of the difficulties of bringing MUS patients on board, the controversy over language and treatment but Didn’t understand the validity of patient concerns because in mental health it seems the patient voice is only worth half of a drs opinion. The protesting MH patient is invisible.

 

Supply-side medicine: driven by the wants and beliefs of those managing and dispensing the services, rather than the needs of those who should benefit from them.

There's a classic story in political science about the Soviet politburo, struggling through economic stagnation in the years before Glasnost, spent considerable time fine-tuning the precise needs of the population, deciding on how many necessities an average citizen should receive, to the point of how many tights a typical Soviet woman should get each year so production would manufacture only what is necessary.

Not arguing the finer points of economics theory but the process is just too similar. There are multiple layers of filters and distortion that go into making decisions that end up being detached from reality, catering to the interests of those running the process at the expense of what is literally the whole point of the process: helping people. The failure here is just total. It feels like a country turning its back on astronomy and going with astrology instead.

 

Bit of a tangent but it seems fitting that a toxic work environment would deliver toxic services.

https://www.hsj.co.uk/quality-and-p...of-bullying-and-toxic-culture/7024480.article

But clearly it's the vulnerable people begging for their lives that are the real bullies.

 

But going about it exactly the wrong way: bringing speculative personal beliefs of mental health into biology instead of bringing biology to explain the mental effects.

And sorry but in the earlier part of that quote, the use of "knowledge" is completely wrong. Speculation and wild ideologies do not amount to knowledge. Knowledge requires a refined process seeking objective evidence of the world. Making stuff up does not create knowledge. If anything, it prevents knowledge from being refined and properly incorporated.

Phrenologists were just as certain that they were creating knowledge as well. There is far too much magical thinking and pseudoscience creeping in and taking over entire areas of medicine.

 

Clearly, if you are in prison, you are guilty of something. If you were not guilty, you would not have been imprisoned. So just confess and we can move on. If you don't confess, we will add charges for lack of remorse. If you show remorse, we may be more lenient, but you will remain imprisoned as you are clearly guilty, your imprisonment is proof of it. QED

And Catch-22 disease goes on and on.

 

One very dangerous potential consequence of MUS (which I've mentioned before) is being diagnosed with 'CFS' and then developing other, different symptoms.

A doctor that subscribes to the MUS nonsense could then encounter a patient that fits the above paragraph, not spot a potentially life-threatening condition and tell the patient that they've had extensive testing and that they should get a job.

That patient was me.

What happens when the convenience of MUS to a doctor results in the death of a patient?

 

Well I suppose the thing I should be worried about as a severe MUS patient is being taken inpatient and given compulsory art therapy

 

Just was reminded of a different institutionalized approach to unexplained illnesses -- the ZusE Marburg (center for undiagnosed/ unrecognized and rare illnesses) first see them as (yet) "unrecognized", "undiagnosed" or "unidentified" illnesses, and second, take into account that suffering from an illness which no one is able to diagnose is likely to cause also emotional responses.

An interview with the center's director Prof. Jürgen Schäfer on "Deutsche Welle":
Who helps when symptoms defy explanation? Prof. Jürgen Schäfer explains how his Center for Undiagnosed Diseases works
https://www.dw.com/en/who-helps-when-symptoms-defy-explanation/av-18895087

(Interviewer asks how Prof Schäfer deals with patients that have been told by previous doctors to have nothing but psychosomatic disorders: )

Asked about medical research, Prof Schäfer says he had the pleasure to work at the NIH Bethesda, Maryland, and:

So, I'm not sure how Prof Schäfer thinks his team can be sure about a "psychosomatic diagnosis", but at least it seems that the team's "psychosomatic physician" does not impose a BPS approach to every patient and moreover seems even to question psychosomatic diagnoses of "many" patients.

Google translation of the ZusE's information for patients here.

Edit 1: edited for clarity, added quote
Edit 2: added more quotes (accuracy not warranted) and a comment

 

Probably nothing, unless the relatives of the person who dies pay for an independent post-mortem. (If such a service is even available in the UK, and can be trusted to be completely independent - probably rather a tall order...)

 

I hadn't been on KCLs website for a while but it is very clear the way things are heading;

The 'About Us' tab takes you to this:

And the section on the PACE trial

https://www.kcl.ac.uk/ioppn/about/difference/22-cbt-for-chronic-fatigue-syndrome

https://www.kcl.ac.uk/ioppn/depts/pm/research/cfs/staff

 

Apologies if this paediatric guideline has already been flagged up in another thread on S4ME:

https://paedmhassoc.files.wordpress.com/2018/12/mus-guide-with-leaflet-nov-2018.pdf

MEDICALLY UNEXPLAINED SYMPTOMS (MUS) IN CHILDREN AND YOUNG PEOPLE

A GUIDE to assessing and managing patients under the age of 18 who are referred to secondary care

This Guide is endorsed by the Royal College of Psychiatrists (RCPsych) and the Paediatric Mental Health Association (PMHA).
August 2018



Note: On Page 32, Appendix 2, it states:

"The upcoming ICD 11 is likely to use the diagnosis ‘Bodily Distress Disorder’ to encompass all terms under F45-somatoform disorder (apart from hypochondriacal disorder) and F48.0-Neurasthenia, into a single category." ​

This guide would have been in preparation before the WHO froze the ICD-11 draft for the "Implementation" release of ICD-11 MMS, in June 2018, which includes Bodily Distress Disorder. Likewise the forthcoming derivative publication, ICD-11 Clinical Descriptions and Diagnostic Guidelines for Mental and Behavioural Disorders [1] that expands on the disorders in ICD-11 Chapter 06 Mental, behavioural or neurodevelopmental disorders.

Refs:

1 (Page 14) Reed GM, First MB, Kogan CS, et al. Innovations and changes in the ICD-11 classification of mental, behavioural and neurodevelopmental disorders. World Psychiatry. 2019;18(1):3-19. Reed GM, First MB, Kogan CS, et al.

HTML: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313247/
PDF: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6313247/pdf/WPS-18-3.pdf

 

I wrote to Joanna Levis to ask a few questions.
It appears to have been treated as an FOI and I've just had a reply:

 

Don't know whether this slide presentation has been posted in another thread:


http://medicine.exeter.ac.uk/media/...psychiatry/Rory_Conn_-_Child_Liaison_2018.pdf

Why do we need specialist Paediatric Liaison Services?
Dr Rory Conn Consultant Paediatric Liaison Psychiatrist Royal Devon & Exeter Hospital


"Childhood MUS" from slide #65