MUST Fight MUS

Sly Saint said:
posted by me!
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Thanks Sly Saint for posting that audio recording.....the person who sent it to me couldn't remember which thread it was on.


With respect to the paper you mention -

Nimnuan C, Hotopf M, and Wessely S, 2001, Medically unexplained symptoms: an epidemiological study in seven specialities,Journal of Psychosomatic Research, 51: 361–713

- I believe that's the one that is used repeatedly to claim that around 50% of outpatient appointments can be attributed to MUS. It's a rubbish paper due to both low sample size and potential for exaggeration of MUS rates, that the authors admit to in the paper, and yet it forms the basis of the claims in much of the promulgated IAPT MUS material that massive savings to the physical healthcare budget could be delivered via IAPT MUS intervention. They obviously assume that nobody will bother to check the references.
 
Whenever I have read anything of Simon Wessely's, I have always been struck by the clarity with which he avoids saying anything too specific. It always sounds as though he is saying one thing, but it seldom seems to pan out. I find it impossible to trust people who are so difficult to pin down, so would be very wary of what was going on behind the scenes.

I'll point out here that I have never met him, and really don't know much about him as a person, so this comment is one on his style and responses.
 
Graham said:
Whenever I have read anything of Simon Wessely's, I have always been struck by the clarity with which he avoids saying anything too specific. It always sounds as though he is saying one thing, but it seldom seems to pan out.
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He implies, basically presenting the supposed evidence that patients are depressed haters of psychiatric disorders, but rarely going so far as to flatly deny that ME has a biomedical mechanism. He wants to control the narrative and reap the benefits of it without accepting accountability for the narrative he creates. The exception has been in his more private correspondence or presentations, where there is no real accountability.
 
Graham said:
Whenever I have read anything of Simon Wessely's, I have always been struck by the clarity with which he avoids saying anything too specific. It always sounds as though he is saying one thing, but it seldom seems to pan out. I find it impossible to trust people who are so difficult to pin down, so would be very wary of what was going on behind the scenes.
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I with you there Graham. So what was going on behind the scenes? This may help, thanks to my 'Anon' contact -


A fuller chronological picture of the development of the JCPMH Guidance for commissioners from documents found online:


Key issues discussed - CR 152 report mentioned – ‘The Management of Patients with Physical and Psychological Problems in Primary Care’, (a 2009 RCPsych publication)- http://www.rcpsych.ac.uk/files/pdfversion/CR152x.pdf

from this site -http://www.rcpsych.ac.uk/usefulresources/publications/collegereports/cr/cr152.aspx

and RCPsych president should be made aware of the group so the project can be taken to the Academy of Royal Colleges.


Key issues discussed– CR152 hadn’t had a visible impact; new champion for MH being recruited gives opportunity for highlighting MUS; considering a Guidance document for commissioners; considering NICE guidance option as a powerful tool; link of MUS to personality disorder; involvement of Academy of Medical Royal Colleges; MUS in the GP curriculum; developing an e-learning module…. contact Wendy Burn who has involvement with this.


Key issues discussed – a request to be made to RCPsch and RCGP Presidents for funding for Guidance for commissioners document, £2000 needed initially; forthcoming meeting with RCGP/ RCPsych - Dr Baker and Professor Wessely 16th July; Chew-Graham to become joint chair; linking to local Strategic Clinical Networks (SCNs); separate meeting with RCP President; developing e-learning; survey of RCGP members; identifying and developing Work Streams.


Key issues discussed – able to share MUS resources privately on RCPsych password protected website , non-PCPsych members also; speak to acting RCGP Clinical Champion for Mental Health Liz England to develop link; Commissioning guidance proposal to go to JCPMH for approval, Wessely had said to involve the BPS also, £2000 cost towards Guidance to be split between RCGP and RCPsych, Guidance to be about 20 pages long, JCPMH to help with dissemination, main target to be CCGs; NICE work on NICE guidance on MUS to start 2016, Chew-Graham to ‘keep an eye’ on it; discussions with the Tavistock about e-learning ongoing; Report on July RCGP/RCPsych meeting – Wessely offers 50% funding for JCMPH Guidance, no plans to update CR 152, Wessely – ensure BPS involved, involving National Cancer lead NOT apriority, Wessely would be invited to join any Expert Reference Group ERG; Work Streams with leads identified; possibility of a conference.


Key issues discussed –

Progress with RCPsych resource page; communication with Liz England; proposal for the Guidance for commissioners accepted by the JCPMH - RCPsych and RCGP funding agreed, Expert Reference Group being formed meeting 20 February 2015; problems of ‘territorial disputes’ – needing careful handling (!); updates on NICE guidance, SCNs, Personality Disorder Clinical Reference Group; e-learning – group doesn’t know what’s in either RCP or Tavistock e-learning modules; GP survey work still ongoing; Work Stream development; discussion about a conference*.


Presumably with the establishment of the ‘Expert Reference group’ (note Wessely’s interest/involvement here) and the password protected RCPsych website, any more updates were not made public.


*Perhaps materializing in this 2016 conference - http://www.healthcareconferencesuk.co.uk/news/medically-unexplained-symptoms with this presentation - Commissioning guidance for Medically Unexplained Symptoms (MUS)
 
More on Chew-Graham - her Inaugural lecture at Keele University.




Her work with CFS/ME discussed briefly at about 37 mins, interventions for people with MUS (including CFS/ME) at 47.50.


But most important is her concentration on qualitative studies, (she doesn't come across as a scientist), and he use of them to influence NICE guidelines and health policy especially in primary care. To counter that we need to press for an academic qualitative study done by somebody we can trust, i.e. interviewing a large sample of patients to find out their point of view about their NHS care, or lack of it. Would Keith Geraghty be up for doing this I wonder?
 
Esther12 said:
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.
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In due course it would be good for PACE to be used as a clear example not just of appalling research, but also to exemplify the very real dangers of presuming as-yet-unexplained-by-medical-science symptoms to be psychological by default.
 
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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The unexplained portion seems to have been inadequately explored in the sense that those providing the data were not sufficiently expert to explain it. This brings a question of what is sufficient. We do not accept blood pressure information from faulty devices, so how can such research accept potentially flawed diagnoses?

To assure doctors that 30% of patients are medically unexplained is not very helpful as it implies that there is no diagnosis. To say that a patient has an unexplained problem would require that it has been adequately investigated, or at least a complete history taken by someone sufficiently trained to do so. Research in this area surely requires some standard of measurement of the accuracy of the explanation, or lack of it. Perhaps funds directed to MUS might be directed to better training of doctors in some common clinical problems that are misdiagnosed rather than unexplained.
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Essentially arguing for objectivity and accuracy, which are the very things SW always seems so averse to. The cynic in me says that knighthoods and honours are likely to be much more forthcoming when puppeteers can see money being saved, than would ever be the case from merely being ethical and medically rigorous :rolleyes:.
 
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Lilpink said:
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-
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I once read another book on the subject when i didn't know yet i had ME/CFS.
That said ignoring symptoms and arbitrarily concluding they are psychosomatic will lead to much illness and many deaths over time :emoji_face_palm:
Some are not diagnosed with things from cancer to auto immune diseases, but will they be swept under the rug? Chances are yes, few will put the pieces together and its easy to ignore things when you can alternative fact them away without consequence :emoji_face_palm:
 
I should not be on this thread as its upsets me but I read today on Dr. Hng's facebook page that MUS clinics are currently being rolled out across the UK. And ME is part of MUS. Is that freaking anyone out??? I haven't read the thread as I have no energy so apologies if this has been discussed already.
 
Yes it does seem to be true, and yes it freaks me out too.

I'm determined to keep a low profile and not get myself referred to one. I wouldn't go anyway, but it is deeply worrying for all new patients and those not 'in the know' about how damaging this can be to their health, not only in being fobbed off with no proper expert diagnostic service, but also completely inappropriate 'treatment'.
 
presuming as-yet-unexplained-by-medical-science symptoms to be psychological by default
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It is more than puzzling as to how any medical professional ever got on this bus. Where is the outrage? The bursting out into guffaws at the sheer absurdity?

Edited to answer my own question: I suspect it has to do with the miseducation we are all subject to, when healthy--the subtle belief that our state of health and vigor is somehow related to our amazing strength of character.
 
Allele said:
It is more than puzzling as to how any medical professional ever got on this bus. Where is the outrage? The bursting out into guffaws at the sheer absurdity?

Edited to answer my own question: I suspect it has to do with the miseducation we are all subject to, when healthy--the subtle belief that our state of health and vigor is somehow related to our amazing strength of character.
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I think it is much more to with highly ambitious unscrupulous power mongers making land grabs.
 
My inner nature makes me very suspicious of highly ambitious folk. But trying to think rationally about it all, I think the truth is that many of the senior figures in all of this feel quite inadequate when it comes to statistics and analysis, and are easily led either by others or by their wishes for something to be true. It's why they lash out when criticized, and show such signs of stress.

In contrast, those who display an easy charm and slick answers (which don't actually answer the questions) make me think much more of sociopaths.

Can I get a job as a psychoanalyst now?
 
Graham said:
My inner nature makes me very suspicious of highly ambitious folk. But trying to think rationally about it all, I think the truth is that many of the senior figures in all of this feel quite inadequate when it comes to statistics and analysis, and are easily led either by others or by their wishes for something to be true. It's why they lash out when criticized, and show such signs of stress.

In contrast, those who display an easy charm and slick answers (which don't actually answer the questions) make me think much more of sociopaths.

Can I get a job as a psychoanalyst now?
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But of course many sociopaths are highly ambitious, often beyond their abilities, and end up being very sensitive to criticism. Their easy charm and slick answers being their substitute for answers beyond their capabilities.
 
That's exactly what I meant about them being sociopaths. I came across a few in teaching - I think the giveaway is the way in which they treat "juniors" who disagree with them: that's when they lash out, rather than in public, where they risk a loss of face.

What has this to do with MUS? Well, simply that we must be aware of the varieties of people that we are opposing, and find ways to defeat them. I think our sustained campaigning with PACE probably shows the best technique - steady, reasonable, well-argued, public criticism, and a refusal to take evasive answers.
 
It’s a bit mysterious, @Allele. From what I can see and have experienced there was a big empty space where the “too hard” patients got dropped. It seems popular science, Eastern medicine and new age ideas about holistic mind/body is affecting western medicine too, only it’s not really made for it. A lot of research in neuroscience is being conducted around how the brain heals itself and how it trains the body. The conclusions being made and the dissemination - as you say, ‘miseducation’ - of it are what is partially the problem.

They don’t get that you can’t just conveniently label the conditions you don’t care about with “MUS” or the F word and not the ones you do. If you look there is is plenty of anecdotal “evidence” for how you can think, pray, eat, exercise yourself out of cancer, emphysema, heart disease and herpes. Yeah, people who have ‘strong moral character’ and who are looked upon as superior, as healthy people are. Lots of strange, inexplicable things happen to people when it comes to illness. Nothing is textbook (apart from my FND, that, apparently, is.). So far all they’ve come up with is similarly anecdotal “evidence” of “MUS”. They only discriminate against it and distance it for the same reasons medical practitioners always have.
 
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