MUST Fight MUS

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.

 

'Anon' found this online - RCPsych/RCGP Working Group on Medically Unexplained Symptoms - this shows where the JCPMH Guidance document https://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf had its roots.

Carolyn Chew-Graham and Simon Heyland, and several of the other authors, were clearly in on it from the beginning. Madness....... someone should send them all to therapy.

 

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.

 

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.

 

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:

• November 2013 - RCPsych/RCGP Working Group on Medically Unexplained Symptoms

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.

• December 2013 - RCPsych/RCGP Working Group on Medically Unexplained Symptoms (see previous post)

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.

• May 2014 - MUS - Royal College of Psychiatrists

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.

• September 2014 - Royal College of Psychiatrists Royal College of General Practitioners

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.

• January 2015 - Royal College of Psychiatrists Royal College of General Practitioners

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.

https://www.youtube.com/watch?v=5JG_1CgNFMs

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?

 

https://www.youtube.com/watch?v=Kg0QqMz1dps

 

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.

 

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 .

 

Nor had I, but somehow it doesn't amaze me ... nor you I'm sure. I find it very hard to believe the motivation has much to do with the Hippocratic oath.

 

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
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

 

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.

 

Such a horror show

 

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.

 

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?

 

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.