MUST Fight MUS

MEMarge said:
I see PACE as a cornerstone supporting other psych/MUS ideas.
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Yes, but these guys are slippery. We've already seen NICE's circular argument that their guidelines were not based in PACE, but were in fact based on other studies. Even though those studies were not seen as good/robust enough to base their guidelines on at the time.

PACE is a cornerstone of the BPS movement, but not the whole foundations. Removing PACE is damaging, but is unlikely to bring the whole edifice crashing down straight away. We will need more.
 
I agree that it's much more than PACE. The 'functional disorder' hypothesis agrees with the 'findings' of PACE but has it's own evangelical message that many are taking up especially in the neuroscience area. It is a 'train the brain' message that is popular in people who distrust medicine and also in those who do. They accept MUS patients with open arms and benevolent smiles. Their 'specialised' teams of psychologists and physiotherapists, sorry, NEUROpsychologists and NEUROphysiotherapists are trained especially how to administer GET for MUS patients, helping them to see their minds as powerful and that they can push through this. People get tricked by these compassionate doctors who give them attention and acknowledge that their symptoms are real and true and that they're not a waste of space or time. During this honeymoon period the patients will write how much they've been helped and how great it is to finally be recognised and how much better they are doing.

So I think this MUS thing has attracted F word practitioners like they found a niche and have happily set up shop there. It's important to know if we fight MUS as a 'thing' we fight the F word too.
 
jeckylberry said:
It's important to know if we fight MUS as a 'thing' we fight the F word too.
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It’s not just important, it’s paramount that we acknowledge that we are categorized by the Government as ‘MUS’ patients now, and quite frankly to try to set ourselves apart IS to lend credence to the existence of ‘somatization’ in conditions such as fibromyalgia, chronic pelvic pain, unexplained chest pain etc. While people with these so-called ‘functional’ disorders may not be suffering as much as some of us are, either physically or in terms of the malevolence directed at their patient communities, they are suffering too. It’s not a question of IF we fight MUS, we have no option but to fight ‘MUS’ and it would be good if we could do this with other patient groups who are also being so dreadfully short-changed by the NHS. There is power in numbers....
 
Lilpink said:
There is power in numbers....
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Yes. And the numbers are growing each day as the f-people add more illnesses to their imaginary-imaginary diseases.

I think we also would do well to galvanize medical science to take their territory back from the BPS people. It is hard to fathom how anyone capitulated to these ridiculous ideas. (Other than it takes a tough and dedicated doc to treat a person for whom there is no known treatment.)

Where are the droves of scientists and clinicians protesting this absurdity? We need to get them on board along with the millions of patients that comprise the many groups impacted by this nonsense.
 
Allele said:
Yes. And the numbers are growing each day as the f-people add more illnesses to their imaginary-imaginary diseases.

I think we also would do well to galvanize medical science to take their territory back from the BPS people. It is hard to fathom how anyone capitulated to these ridiculous ideas. (Other than it takes a tough and dedicated doc to treat a person for whom there is no known treatment.)

Where are the droves of scientists and clinicians protesting this absurdity? We need to get them on board along with the millions of patients that comprise the many groups impacted by this nonsense.
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Absolutely. Maybe it would be easiest to target the patient groups most tainted by this exercise? Try to find out whether or not charities aligned to those diseases are also waging a war against MUS and collaborate?
 
Lilpink said:
to try to set ourselves apart IS to lend credence
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this.

first, it's not ok to be the nerd who says to the jock "no no that guy over there is the nerd." [an arbitrary social construct of hierarchy. nerds on /this/ forum are cool.] second, the jock will bully both you and the guy you pointed to.

"no, i am not a witch" reinforces witchcraft thinking, which reinforces that you are a witch. witchcraft does not exist. prove that it does. that is the message.
 
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I agree with a lot of people's concerns but, but I think that there's still value in hammering on about PACE with regards to MUS problems. The PACE authors are a key part of the MUS campaign, and other figures like Moss-Morris are on the periphery.

Even if the results from PACE are now viewed as untrustworthy, many people fail to realise just how badly the authors and their supporters have behaved. PACE was such an exemplar of this approach to patients that, if we manage to have people understand what a disaster the whole project was, it should help undermine faith in the wider MUS project.
 
Allele said:
Where are the droves of scientists and clinicians protesting this absurdity? We need to get them on board along with the millions of patients that comprise the many groups impacted by this nonsense.
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'Anon' researcher, (who discovered the problems with Crawley's School Absence Study), found this document online today and sent it to me to post -

IAPT - The British Pain Society

- a critical response (dated 12th November 2008) by the British Pain Society particularly to the 'Medically unexplained symptoms positive practice guide' (of October 2008) - Medically unexplained symptoms positive practice guide which claimed, amongst other things, that

"The vast majority of MUPS, such as pain, irritable bowel syndrome and chronic fatigue syndrome, have no obvious cause and often do not actually require any input from health services."


The British Pain Society document is well worth a read. NB The British Pain Society have registered as a stakeholder in the 2020 NICE review, so it would be interesting to know if they still hold this view.
 
Quoting from the letter @Lilpink links above:
A new name may convey new understanding or mask questions that are unresolved. I am not sure where medically unexplained symptoms (MUS), proposed by Dr Page and Professor Wessely (May 2003 JRSM1), fits into those roles.

MUS surely depends upon who is providing the explanation?
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It is rare in my experience to encounter undiagnosable headache, yet this is often a symptom quoted in such research.2 The unexplained portion seems to have been inadequately explored in the sense that those providing the data were not sufficiently expert to explain it.
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I had not realised it was Wessely who invented the whole MUS concept and label.
 
Call me an idealist, but I would like to think that medical doctors, rather than accepting the "easy pass" of MUS, would be appalled and offended at the idea that as yet unexplained symptoms are by default magically caused by the patients' neuroses, and thus under the purview of psych.

I would hope that any medically unexplained anything would be taken as a challenge and initiative to explain it, not an excuse to slink away, tail between legs, casting shame and blame on the persons to whom medical knowledge has thus far been unable to bring succor.
 
Lilpink said:
And let's not forget this letter by Peter Goadsby to Simon Wessely in 2003 -

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC539555/

Peter Goadsby is now Professor of Neurology at King's College, London and is also Director of the NIHR / Wellcome Trust Clinical Research Facility at KCL. - https://www.maudsleybrc.nihr.ac.uk/research/leadership-group-a-z/peter-goadsby/

Does he still stand by what he wrote in his letter to Wessely, I wonder?
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Now that letter is a thing of beauty...
 
Is it worth collecting useful documents in a separate MUS documentation thread? I think it would be useful for anyone who needs to to be able to find things like the Goadsby letter easily in the future.

edit to add: Actually, no question. It would be useful.
 
Alvin said:
If examples are needed of people who would be labelled MUS until the real cause was discovered, much suffering later here are some good candidates
Imagine they were given up on because instead of hunting they were written off after the first few tests...
https://www.nytimes.com/column/diagnosis?
https://www.washingtonpost.com/national/health-science/medical-mysteries/
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Yes indeed, I understand that Lisa Sanders has also written some good books on the art of diagnosis and the dangers of ignoring unusual symptoms-

Amazon product ASIN 0767922476
Amazon product ASIN B012HUD0HK
Unfortunately, with MUS and IAPT we have a race to the bottom, doctors being taught and encouraged to throw any patients with unexplained symptoms into the psych waste bin in order to save £billions from the NHS budget. There has been no risk assessment for this policy, and since there is no good research into misdiagnosis rates or collection of misdiagnosis data it is a recipe for disaster that may only be investigated and challenged when death rates rise markedly.

Why don’t doctors realise this? Is it because they are too subjective and prejudiced against their patients, or too arrogant to admit that they don’t know everything, or too subservient to those instructing them? Is it because it’s simply the easiest thing for them to do to beat down their burgeoning waiting lists and to get rid of difficult and/or persistent patients? Or are they being incentivized to refer more patients to IAPT, or forced even?

Before the 2015 election Layard and Clark, the founders of this IAPT programme, launched and promoted their book ‘Thrive’ and made sure that free copies were distributed to politicians of all political parties to convince them all of the importance of this revolutionary programme of change to the NHS.

Perhaps all doctors should be given free copies of Lisa Sanders' book to encourage them to raise their game and stop this nonsense?
 
Trish said:
I had not realised it was Wessely who invented the whole MUS concept and label.
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as I have said on another thread "..all roads lead to Simon Wessely"

I would like to see a chronological listing of everything he has had a hand in.

nb: I, like many others I imagine, initially thought this was a rather simplified conspiracy theory and blame game............but almost everything I have read so far of how we got here have had SW as a key protagonist.
 
Sly Saint said:
.but almost everything I have read so far of how we got here have had SW as a key protagonist.
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But here is the anomaly, when you search for Wessely with IAPT virtually nothing comes up. And in the audio recording posted elsewhere on s4me, when Ed Milliband raises IAPT, and asks him to comment, Wessely moves swiftly on (at 55 mins). He is clearly linked to it, as this paper with David Clark shows - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2669536/ and he has apparently referred to IAPT as “the greatest revolution in British mental health in fifty years” IAPT-LTC 31 October 2017 - Yorkshire and the Humber Clinical ... and NHS England IAPT Programme Physical and Mental Health Treatment and is still doing so - https://www.imperial.ac.uk/business-school/intelligence/features/state-of-mental-health-in-the-uk/ , except here he is now warning that because of this the system is about to collapse . So perhaps that is why he now moves rapidly on when asked about IAPT?


But that doesn’t explain why there is so little to historically connect him with the IAPT programme, (except that paper with Clark that I mentioned above which clearly does, even though IAPT strangely doesn’t get a mention in it). Maybe he doesn’t get on with David Clark, maybe he felt that Clark was stealing his ground/thunder, or maybe it was a conscious political move on Wessely’s part to keep IAPT at arm’s length in case it did fail, which appears now to be happening. But he has undoubtedly used it to his own advantage, promoting his somatization MUS view for, and to, all and sundry, and securing his own promotions and knighthood. But now tries to wriggle his way out of taking any responsibility for this failed programme, blaming everyone else but himself.

http://www.bmj.com/content/358/bmj.j4305

He helped to make this crisis, and profited from it, so he should take responsibility and either clear up his own mess or alternatively jump his sinking ship quick smart.
 
Lilpink said:
posted elsewhere on s4me
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posted by me!
Lilpink said:
why he now moves rapidly on when asked about IAPT
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or maybe because there are protests about it among the therapists
https://www.s4me.info/threads/protest-against-iapt-therapies-march-21st-2018.2630/

see also:
http://www.aft.org.uk/SpringboardWebApp/userfiles/aft/file/Events/Psychological Therapies 2017.pdf

He is doing very well at talking things down that he originally talked up in order to be seen as the one to fix the problem/with all the answers by the establishment and as I said on another thread 'the saviour of those with mental health issues', just like he did with ME and then the Military for which he was given a knighthood.


maybe of interest:
Nimnuan C, Hotopf M, and Wessely S, 2001, Medically unexplained symptoms: an epidemiological study in seven specialities,Journal of Psychosomatic Research, 51: 361–713
Reid S, Wessely S, Crayford T and Hotopf M, 2002, Frequent attenders with medically unexplained symptoms: service use and costs in secondary care, British Journal of Psychiatry, 180: 248–53
 
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