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NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

Discussion in '2020 UK NICE ME/CFS Guideline' started by Science For ME, Oct 28, 2021.

  1. fivetowns

    fivetowns Established Member (Voting Rights)

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    67
    I'm 90% sure they backed LP purely because the guidelines recommended against it.
     
    Ariel, adambeyoncelowe, Sean and 7 others like this.
  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    3,660
    Generally there are very strict rules about NHS employees accepting financial inducements, and presumably most Universities would have similar guidelines. When I was still working we would even inform our line managers about a box of chocolates and then share them amongst the whole work place or staff team. Certainly everything needs to be declared, and even other work or investments needs to be recorded in case of conflicts of interests. I was certainly expected to inform my line managers about any medico legal work I did in my own time.

    Having said that work for insurance companies seemed to achieve results in favour of those companies.

    Regulations around private patients are different, but I doubt that would cover stock options.
     
  3. Skycloud

    Skycloud Senior Member (Voting Rights)

    Messages:
    2,187
    Location:
    UK
    I think I was feeling very discouraged yesterday by the consultation comments and the RC’s statements. They do present a daunting edifice and the defence of LP is just so extraordinary and wrong. Today I think it was pointless and probably not wise of me to speculate their motivation. I used far too much energy on it and I really have no idea what they were thinking. I’m interested to know if their motivation becomes clearer but for now I’m just happy that the guideline prohibits LP.


    Thank you for making me laugh.
     
    Ariel, Kitty, fivetowns and 9 others like this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,428
    Location:
    London, UK
    I looked again at the RCs statement today and realised that it is more petulant whining than defiant denial. I think certain individuals continued to feel that some sort of stand had to be made but all we are really left with is embarrassingly poor arguments about evidence and a feeble attempt to return to a marketing pitch about rehab and mental health.

    What matters is the pressure on service units to dig heels in or to move forward. I actually doubt that this document will have any impact on that. It will reflect continuing attempts by rehab people and the CBT psychologists to keep business but how commissioning goes is likely to depend more on financial factors and local lobbying. Local lobbying for the more progressive approach that BACME seems to take may be very important.
     
    Last edited: Nov 2, 2021
    Arvo, Ariel, Barry and 22 others like this.
  5. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    2,134
    Location:
    Canada
    I may well be wrong. Although when I wrote I half expected someone to think I meant stock options. PP's LP would have to be publicly traded for that. It was meant to indicate an example of how financial incentive motivates people in favour of something.

    But if the NHS rules are as they are then perhaps this was not an issue. My own cynicism cannot rule it out entirely, under the 'rules are for everybody . . .else.
     
    Kitty, Sean, Hutan and 1 other person like this.
  6. Sean

    Sean Moderator Staff Member

    Messages:
    7,135
    Location:
    Australia
    None so blind as those who don't want to see.

    ––––––
    Oh the bitter irony.
     
    Last edited: Nov 4, 2021
    Barry, ukxmrv, Kitty and 7 others like this.
  7. Skycloud

    Skycloud Senior Member (Voting Rights)

    Messages:
    2,187
    Location:
    UK
    Thank you, that’s helpful. I agree completely about the lobbying.
     
    Missense, Kitty, Sean and 1 other person like this.
  8. Adrian

    Adrian Administrator Staff Member

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    6,486
    Location:
    UK
    There is a different conclusion which is that they don't follow up so they don't see harm because they cover their eyes and look the other way. The problem becomes one of whether therapists acknowlegde harm (and if a protocol says symptoms can worsen initially then perhaps they effectively encode harm as normal) then do therapists record and discuss harm (which would mean acknowledging to themselves that what they are doing causes relapse) and finally do they follow up drop outs (perhaps those with 'temporary worsening of symptoms'!).

    Unless they have really good and honest reporting and analysis they may well be putting their heads in the sand.
     
    Ariel, ukxmrv, Missense and 9 others like this.
  9. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    2,731
    I think a lot of them don't follow up, interpret worsening as noncompliance or catastrophising of 'normal setbacks', or just hear what they want to hear. Whenever you improve, that's down to them; whenever you worsen, that's down to you.
     
    Wits_End, Ariel, Barry and 26 others like this.
  10. Adrian

    Adrian Administrator Staff Member

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    6,486
    Location:
    UK
    Yes its one of the reasons that 'clinical experience' can be very dodgy for trying to form any sort of evidence base. Yet this is what the RCs seem to believe is the right approach as 'the doctor is always right' in their view.
     
    Ariel, Shinygleamy, ukxmrv and 15 others like this.
  11. Simbindi

    Simbindi Senior Member (Voting Rights)

    Messages:
    2,746
    Location:
    Somerset, England
    I've started looking at some of the booklets/advice pages from different ME/CFS services on energy management/pacing, and the one thing they all have in common is their focus on changing 'boom and bust' patterns of behaviour. They all seem to attribute the fluctuation in a patient's fatigue levels to this 'behaviour pattern', rather than seeing it as an an integral part of the illness itself, and they don't even acknowledge all the other symptoms we have. There is no understanding of post-exertional malaise, they all seem to describe its manifestation in patients as an increase in post exertional fatigue only, as is seen in all chronic illnesses (where fatigue is considered generalised fatigue, not the debilitating and multifaceted 'ME fatigue' as defined in the new NICE guidelines).

    Any continuing fatigue (they don't even mention other increased symptoms such as pain, tremors, cognitive impairments etc.) is attributed to the patient's behaviour - either they are doing too much and 'booming and busting', or they are doing too little and therefore not 'energising' themselves or building stamina via activity. There is a telling belief that enjoyable activities (either cognitive or physical) produce energy - they clearly haven't grasped that is not the case for PWME. We may produce endorphins that mask our symptoms for a while, or 'run on adrenaline' to complete a task, but there is always a payback for us. But in these information booklets, a PWME's payback is never accepted as PEM arising from some (unexplained) pathology, instead it is attributed to their supposed 'boom and busting' activity cycle.

    The bizarre thing is they think cycling between more and less activity levels is an abnormal behaviour pattern, when it is actually what the healthy human body was designed (via evolution) to do. It's one thing to be recommended to try to change this natural behaviour for a time limited period, while convalescing from an acute illness, but telling a person to live in such an abnormal way for years and decades on end would be considered abusive control in a personal relationship (as @Invisible Woman said in a post). There are just so many layers of abuse in the way PWME have been treated, it is like peeling back an onion.

    I'm not sure what it will take to change this mindset in the clinics, it appears to be so deeply ingrained. In all their current claims that they 'haven't been doing GET or CBT based on deconditioning' they seem to be missing the point that their whole understanding of ME is wrong and they appear to have been trying to treat a different condition to that specified in the new NICE guidelines (as borne out in so many of their stakeholder comments).
     
    Last edited: Nov 3, 2021
    Arvo, SNT Gatchaman, Ariel and 16 others like this.
  12. Mithriel

    Mithriel Senior Member (Voting Rights)

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    2,816
    Exactly. I have never fit the CFS definition, many of us did not yet they said it was a new name for ME without ever researching what the pathology in ME was. They never checked to see if we were deconditioned either.

    So it all started with a fixed belief not any evidence and they still refuse to see anything against that belief, certainly not the patient's reality. For all their demands for evidence there was no evidence for CFS existing as the disease they described and that has not changed.

    As an aside, the one thing we can be fairly certain of is that LP is too expensive to be commissioned by the NHS.
     
    Arvo, Ariel, Missense and 8 others like this.
  13. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    3,660
    Unfortunately it does not seem to be too expensive to be paid for by research projects looking at its use in children (unless of course Parker sees this promotional activity as worth it and provides free courses), and papers like Prof Crawley’s irrevocably flawed SMILE trial, not only risk harming the children involved, but result in pressure on parents to try out LP for their desperately unwell children. The outcome being both financial hardship for the family and worsened health for the child with ME.

    Hopefully the new guidelines will ensure researchers and health workers are no longer able to encourage families to try LP.
     
    Ariel, Shinygleamy, Alis and 9 others like this.
  14. Sean

    Sean Moderator Staff Member

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    7,135
    Location:
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    I am skeptical that the situation can be changed much or quickly while the same senior personnel remain in charge of the clinics.
     
    SNT Gatchaman, Ariel, Alis and 10 others like this.
  15. Trish

    Trish Moderator Staff Member

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    52,176
    Location:
    UK
  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    9,580
    Location:
    UK
    I would think they would see it as a bargain c£800 for a 3 day 'cure' and I'm sure PP would offer bulk discounts. I imagine a course of GET /CBT costs much more.

    eta: and of course there are no shortage of LP practitioners and if they need more well, it doesn't take long.
     
    Last edited: Nov 3, 2021
    Ariel, Missense, Solstice and 4 others like this.
  17. Mithriel

    Mithriel Senior Member (Voting Rights)

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    2,816
    Well they will if it suits somebody ....

    I think Parker provided it free to the NHS trial.

    The most offensive thing about them pushing LP for children is that parents will put themselves into debt if they believe it will cure their kids. I have heard of scams for kids with cancer in the US and this is just as criminal.

    edit to add bits
     
    EzzieD, Ariel, Shinygleamy and 7 others like this.
  18. Woolie

    Woolie Senior Member

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    2,918
    :rofl::rofl::rofl::rofl::rofl::rofl:!!!!

    (bolding mine)

    If that's how they see it, why the hell spend this sort of time and effort defending the very idea of this stupid tea party? Why can't they just grow up and get a real job?
     
    NelliePledge, EzzieD, Wonko and 8 others like this.
  19. Mithriel

    Mithriel Senior Member (Voting Rights)

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    2,816
    It wouldn't pay so well?
     
    Woolie, Amw66, EzzieD and 6 others like this.
  20. Mithriel

    Mithriel Senior Member (Voting Rights)

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    2,816
    More seriously, if you look at the wider implications the BPS have spent time and effort getting into the public consciousness that most diseases are due to lifestyle choices. (Note they carefully don't include arthritis from jogging or lung disease from bad housing or work related consequences to health)

    If they are due to bad choices it becomes personal responsibility to get better and they provide the answer in changing your behaviour and exercising. Bad health is not bad luck but due to sin so why should anyone else pay for it?
     
    TiredSam, Arvo, Lilas and 10 others like this.

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