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.
 
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.
 
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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.
 
Jonathan Edwards said:
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.
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Wrong kind of CBT apparently.
 
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.
 
Cinders66 said:
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.
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And instead of questioning these researchers and therapists about the validity of their therapy, this opposition of the patients reinforces their belief that patients are delusional, thus more treatment is even more needed.

Circular reasonning once again...
 
chrisb said:
The overall impression given is that the sole interest is the implementation of policy without regard to the substance of the policy, its effects, or the evidence for it. It is all merely management. There seems little regard for the clinical.
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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.
 
Sly Saint said:
Sheffield
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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
The culture in the CCG has been described as “toxic” by former and current employees, who spoke to HSJ on condition of anonymity. They claimed bullying, favouritism and harassment was widespread.
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But clearly it's the vulnerable people begging for their lives that are the real bullies.
 
chrisb said:
a model for mental disorder which takes account of findings in both social psychiatry and molecular biology
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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.
 
Cheshire said:
And instead of questioning these researchers and therapists about the validity of their therapy, this opposition of the patients reinforces their belief that patients are delusional, thus more treatment is even more needed.

Circular reasonning once again...
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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?
 
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: )

Prof Schäfer: Well, it's not easy. It's hard to diagnose all these psychological and psychiatric diseases. It's more complicated than to diagnose a myocardial infarction. […] Now, in our center it's very important that a very experienced psychosomatic physician is part of our team who looks very carefully on the reports and medical histories of our patients.
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And by all my experience I must say many patients end up in this psycho case which don't belong there. It might be some somatic disease that's leading to psychological problems [...]“
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Interviewer: For me as a GP, I mean I‘m a primary care physician, I learn in my training, that if you have a patient with a psychosomatic disorder, you shouldn‘t do too many tests to them, because it may fixate the psychological condition. You shouldn‘t put them trough an MRI scan, for example. What do you say to that?
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Prof Schäfer: That's true, but as a matter of fact, at the end you must be extremely sure on your diagnosis and if there is some doubt, you have to proceed with diagnostics and there‘s no excuse. You need to prove the diagnosis and for this you need to test this.
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Asked about medical research, Prof Schäfer says he had the pleasure to work at the NIH Bethesda, Maryland, and:
[...] what I would like to see in Germany also, but in many other countries as well, are clinical centers like at the NIH […] That's an excellent research option for everyone. And there you can send in your patients and make a diagnosis from everything.
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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
 
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I hadn't been on KCLs website for a while but it is very clear the way things are heading;

Chronic Fatigue Research and Treatment Unit

Who's who
We have a multidisciplinary team who can provide appropriate assessment and treatment to suit patients’ individual needs.

The team are experienced and committed to providing evidence-based treatment and are at the forefront of research in terms of understanding and developing appropriate treatments for CFS/ME.

Staff in the Persistent Physical Symptoms Research and Treatment Unit, London

Director and Cognitive Behavioural Psychotherapist
Professor Trudie Chalder
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The 'About Us' tab takes you to this:
About the Unit
The Persistent Physical Symptoms Research and Treatment Unit is a national specialist service undertaking assessment, treatment and research regarding chronic fatigue syndrome (CFS; sometimes known as ‘ME’).

The unit is a partnership between King's College London, South London and Maudsley NHS Trust and NIHR Biomedical Research Centre.

Our routine treatment is cognitive behaviour therapy, which has been shown in several randomised controlled trials to be an effective intervention for CFS/ME. Some individuals receive CBT over the telephone if they live a long way from the unit or find travelling difficult.

We also provide GET (Graded Exercise Therapy)

We are now also seeing patients with fatigue in relation to chronic diseases.

Adults with CFS/ME who fulfil specific research criteria may be offered the opportunity to participate in research at this unit.

Adolescents with CFS/ME may be eligible to take part in our research.
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And the section on the PACE trial
Our researchers were involved in the landmark PACE trial, which showed that CBT and GET for CFS were more effective and more cost-effective than adaptive pacing therapy – where people balance rest with activity – or specialist medical treatment. One year, after a course of CBT or GET, a fifth of people had recovered and were able to partake in life without significant fatigue.

The PACE trial used the ‘Chalder Fatigue Scale’, first created in 1993 to measure physical and mental tiredness. The 11-question form is used in both research studies and specialist clinics all over the country to monitor people’s progress and assess how effective the treatment is.
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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

 

Attachments

Sly Saint said:
As increasingly pw ME/CFS are being referred through IAPT for treatment as MUS I thought I'd set up a separate thread from the ME/CFS Services in UK.

"
Medically Unexplained Symptoms: Primary Care Intervention
University of Sheffield

Subject Experts

Professor Peter White is Professor of Psychological Medicine at Queen Mary University of London and honorary consultant in liaison psychiatry at St Bartholomew’s Hospital. His research has focused on illnesses that involve mind-body links, which incorporate MUS, particularly chronic fatigue syndrome (CFS) and chronic pain conditions. He has led a number of randomised controlled trials (RCTs) of behavioural modification interventions, particularly CBT and graded exercise therapy, and was lead co-principal investigator of the PACE trial of non-pharmacological treatments of CFS (www.pacetrial.org/).

Professor Rona Moss-Morris is Professor of Psychology as Applied to Medicine and the Head of Health Psychology at the Institute of Psychiatry, King’s College London. She is National Clinical Adviser to NHS England for Increasing Access to Psychological Therapies for People with Long term and Medically Unexplained Conditions. Her research over the last 22 years has focused on developing cognitive behavioural models to explain the chronicity of symptoms and disability in MUS and using these models to design specific treatments for these conditions. Randomised controlled trials to test the clinical and cost effectiveness of these interventions form a key component of her research.

Expert Advisory Group
The project is also guided by an Expert Advisory Group which consists of a number of subject experts, including patient and charity representatives, clinicians and academic advisors. Together the Expert Advisory Group offers a broad range of MUS expertise, and is consulted at key points in the project in order to help the project team with developing the protocol, interpreting the results, and reviewing draft reports. The Expert Advisory Group ensures a broad range of opinion is heard and therefore plays a key role in reducing bias in the review."


Which charities?

https://www.sheffield.ac.uk/scharr/sections/heds/mus/who
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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:

I write in response to your request for information to Dr Joanna Leavis. As you are no doubt aware, all requests for information made to Public Authorities as defined in the Freedom of Information Act should be regarded as being made under the requirements of that Act, and so your request has been passed to me.
The University's responses to your questions follow:
RE:
14/26 Medically unexplained symptoms (MUS): primary care intervention: please could you tell me if this review has finished

(according to protocol it finished in 2017 but PROSPERO says the review is ongoing).
This study is on-going.

Have the results been published? If so, where.
No, but they will be published as an HTA monograph in due course

Could you also tell me which charities were represented in the Expert advisory group?.
This information will be included in the published study and is therefore exempt from disclosure at the current time under Section 22 of the Freedom of Information Act (information intended for future publication)..

I am required under the Act to inform you that if you have cause for genuine complaint regarding our reply to your request for information, you should within 60 days of receiving this response, write to the University FOI Unit, The University Secretary’s Office, Sheffield University, Western Bank, Sheffield S10 2TN or email foi@sheffield.ac.uk explaining why you are not satisfied with the result.

If you still remain unsatisfied with the University's decision, you will be entitled to complain to the Information Commissioner, Wycliffe House, Water Lane, Wilmslow, Cheshire SK9 5AF.


Yours sincerely


Anne Cutler

The University Secretary’s Office

University of Sheffield

Western Bank

Sheffield

S10 2TN
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