1. Read the 'News in Brief' post for w/c 14th Oct, Guest, by clicking here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Trial By Error: Some Thoughts on MUS and Bermingham; My Letter to Professor Payne

Discussion in 'General ME/CFS News' started by Andy, Jul 9, 2019.

  1. Andy

    Andy Committee Member & Outreach

    Messages:
    7,619
    Likes Received:
    56,138
    Location:
    Hampshire, UK
    http://www.virology.ws/2019/07/08/t...-and-bermingham-my-letter-to-professor-payne/
     
    TiredSam, Lidia, MSEsperanza and 23 others like this.
  2. Peter

    Peter Senior Member (Voting Rights)

    Messages:
    154
    Likes Received:
    1,228
    Very alarming. Brilliantly questioned, @dave30th.

    The mix of MUS, somatisation, now subtreshold levels of somatisation and the imprecise juggling of numbers are really scary. Then add the “magical” IAPT program..

    Times are scary. Constructions no one actually do believe is true are made, followed by desperate measures. It is probably the result of lack of resources and the fear of how to deal with the aging population. Instead of addressing things properly, making the most out of resources, - there are established short-term solutions bypassing root causes, and not really solving anything. You’re right, the consequences are patients don’t get access to medical care and the message is: it’s not worth investing money/funding anything cause of somatisation and/or threshold levels of somatisation? What the :banghead:

    Really hope these people will correct the inaccurate and wrong use of numbers. Here as anywhere else in regard of ME - progress will unfortunately only be made by political actions. All trust lost in medicine in general, doctors and bureaucrats.
     
    Yessica, alktipping, rvallee and 10 others like this.
  3. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    4,024
    Likes Received:
    26,919
    Location:
    UK East Midlands
    Sums up the segue from “all your results are normal” to “let’s get you some CBT” perfectly. Because an illness is currently lacking a medical explanation does not mean it is never going to be medically explained. MUS is not being used as an honest plain English term. It is weasel words deception to allow medical professionals avoid saying honesty to patients that they consider the symptoms to be psychosomatic.

    There remains a stigma about mental health and many of us either have a correct mental health diagnosis or have been incorrectly diagnosed with mental health issues. We don’t need to be told about stigma. When I was diagnosed with depression my GP at the time took an actual interest in it and when I visited about other issues I would be asked how things were. I’ve NEVER been asked anything about how I’m doing with ME even by the GP who wasn’t blatantly sniffy about it. Even when I was going in regularly to get signed off before I was retired the conversation was all about the process of retirement not how was I doing. I think I’d gone in to get a sick note or flu jab and they spotted I wasn’t using my prescription for nortryptiline there was no discussion about why and how I was managing insomnia just removed it from my records. MUS/psychosomatic thinking is poisonous to the GP/patient relationship. MUS needs challenging at every turn.

    I like DT approach of undermining the narrative of MUS by showing the shoddy workmanship under the powerpoints. I think the various misquotes from the proponents and the actual quotes from the original paper are going to make an impact in powerpoints when DT does next round of talks. And now he’s brought this out in the open and got RCGP piece changed anyone talking to folks in authority CCGs or whatever can use it to point out the shoddy approach of MUS proponents and question the reliability of making decisions based on it. If they can’t get this headline figure right is anything they say credible. They have shot themselves in the foot and DT has shown that up.
     
    Rick Sanchez, Yessica, Hutan and 13 others like this.
  4. Barry

    Barry Senior Member (Voting Rights)

    Messages:
    5,015
    Likes Received:
    32,919
    That sleight of word, head messing thing yet again. Mention two different things in the same breath then continue as if they are the same, hoping people don't spot what you've done. Unfortunately it so often works.
     
  5. Lucibee

    Lucibee Senior Member (Voting Rights)

    Messages:
    997
    Likes Received:
    10,590
    Location:
    Mid-Wales
    I've just spotted another instance of this misstated factoid on the Neurological Alliance's blog:

     
    ukxmrv, Barry, Annamaria and 15 others like this.
  6. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    644
    Likes Received:
    10,594
    Thanks. I'm sure there are other instances out there as well. I'm sure most don't read the study but just pick up the mistake from previous mis-citations.
     
    ukxmrv, Barry, Annamaria and 10 others like this.
  7. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    2,469
    Likes Received:
    19,968
    Location:
    Canada
    There really is no other way to put it but the "sub-threshold" hand-waving is completely idiotic and morally bankrupt.

    Any health care system that promotes this kind of nonsense needs to be imploded and rebuilt entirely. "It is thought that" is step 1 in a 10-step process, it cannot ever be used as justification for implementing policies and a system-wide reform. This is happening in complete contempt with the scientific method and reckless disregard for the consequences.

    This is criminal negligence.
     
    Annamaria, ladycatlover, Sean and 4 others like this.
  8. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    4,024
    Likes Received:
    26,919
    Location:
    UK East Midlands
    Most likely I’ve said this before but I really don’t understand how MUS CBT panacea mentality can possibly be compatible with the NHS attempting to address delays in diagnosis of serious illnesses which do actually have treatments available.
     
    alktipping, Lisa108, mango and 8 others like this.
  9. Esther12

    Esther12 Senior Member (Voting Rights)

    Messages:
    3,247
    Likes Received:
    26,879
    Nice one - that was a really clear explanation of this undeniable problem. I think I find the article style blogs easier to take in than the open letters, though I only realised that when I got to the letter section of this blog and felt myself having to work harder.

    By "Dawn Golder is Executive Director of FND Hope UK" - With Jon Stone, Tim Nicholson and Mark Edwards on their advisory board: https://fndhope.org/imab/
     
  10. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    644
    Likes Received:
    10,594
    I can understand that. They have different goals. It's good for me to try to do a mix of both.
     
  11. Mithriel

    Mithriel Senior Member (Voting Rights)

    Messages:
    764
    Likes Received:
    6,141
    This may be classed as politics so remove it if needed.

    There are people desperate to make a profit from the NHS and people ideologically opposed to socialised medicine but the British people love it. It is being sold off bit by bit - like diagnostic labs are now private companies.

    When all you can get on the NHS is CBT and GET then people will be forced to go private and the NHS will be seen as not fit for purpose which will please those wanting to profit but these are also the people who are already setting up companies to deliver CBT and GET. Win, win, win for them, and lose lose lose for everyone else.
     
    alktipping, duncan, Arnie Pye and 9 others like this.
  12. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    4,024
    Likes Received:
    26,919
    Location:
    UK East Midlands
    Those companies/organisations are already delivering generic IAPT CBT and have been doing so at least since 2016 to my knowledge. Here’s the set up I went through the CBT sausage machine with https://www.insighthealthcare.org/about-us/organisational-timeline/. I’ve heard within the local support group that the other group i could have gone with is the one that’s the local ex-NHS organisation and I’ve heard decent feedback about them. I mistakenly went with Insight simply because on a local NHS web page it said the timescale from self referral to starting sessions was shorter with them.

    No doubt their ilk will be looking to pick up CFS/ME business as soon as they can. I suspect that is possibly why we’ve heard some people who’ve been going to pain clinic (CFS clinic was subsumed into community pain clinic) getting quite a push towards doing GET which is the “product” that they offer that differs most and will be less easy for the generic IAPT services to compete on.
     
    Last edited: Jul 10, 2019
    Mithriel, alktipping, rvallee and 9 others like this.
  13. Mithriel

    Mithriel Senior Member (Voting Rights)

    Messages:
    764
    Likes Received:
    6,141
    Exactly. They can't let the PACE trial fail or the truth about MUS and FND come out.
     
  14. dave30th

    dave30th Senior Member (Voting Rights)

    Messages:
    644
    Likes Received:
    10,594
    Hi I'm confused how this would work. You got CBT from this private organization rather than NHS? But NHS covers the cost?
     
  15. Andy

    Andy Committee Member & Outreach

    Messages:
    7,619
    Likes Received:
    56,138
    Location:
    Hampshire, UK
    You can see evidence of this principle in the recent paper that used FOI requests to discover whether fatigue clinics monitored harm from GET.
    https://www.s4me.info/threads/monit...h-service-specialist-2019-hughes-et-al.10173/

    A happy outcome of outsourcing, no need to comply with FOI requests!
     
  16. Arnie Pye

    Arnie Pye Senior Member (Voting Rights)

    Messages:
    2,078
    Likes Received:
    11,536
    Location:
    UK
    My emphasis. This is the bit that has always baffled me. How can people be ideologically opposed to a system which treats (or attempts to treat) everybody who is sick? It's like someone admitting to the world that they don't care if the poor don't get medical treatment and then die as a result. It's also like admitting that the death of people who can't afford treatment or can't be profited from is convenient. If the rich can't make money out of a poor, sick person then the poor, sick person should do everyone a favour and die? And people who are ideologically opposed to socialised medicine think this is all absolutely fine and dandy and they aren't ashamed of it? Why not? What kind of people think the death of the poor and sick is just collateral damage that can be ignored?
     
    rainy, Annamaria, Mithriel and 7 others like this.
  17. Simbindi

    Simbindi Senior Member (Voting Rights)

    Messages:
    461
    Likes Received:
    3,032
    Location:
    Somerset, England
    This has mostly come about because of the Health and Social Care Act 2012. There was lots of opposition to it at the time, referring to it as 'the privatisation of the NHS'.

    For a quick insight see:

    https://en.wikipedia.org/wiki/Health_and_Social_Care_Act_2012

    https://www.nhscc.org/ccgs/

    Clinical Commissioning Groups are mostly free to commission private services over NHS ones and to respond to 'local needs'. However, in the case of IAPT, all CCGs are required to commission these services, including for LTCs! Go figure...
     
  18. ladycatlover

    ladycatlover Moderator Staff Member

    Messages:
    1,801
    Likes Received:
    10,244
    Location:
    Liverpool, UK
    Well I could answer that, but unfortunately it would break the No Politics Rule! :oops:
     
  19. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    4,024
    Likes Received:
    26,919
    Location:
    UK East Midlands
    Wot @Andy said
     
    Annamaria, ladycatlover and Andy like this.
  20. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    2,469
    Likes Received:
    19,968
    Location:
    Canada
    If MUS is a psychological diagnosis, rather than medical, then the patient population experiencing the worst delays completely disappears.

    If you stop counting failures, you can claim a lot of success. So MUS patients are not experiencing serious illness, instead they are experiencing serious distress.

    Even Orwell would be horrified. Probably Swift as well.
     
    Last edited: Jul 10, 2019

Share This Page