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Format of NICE stakeholder meeting?

Discussion in 'Advocacy Projects and Campaigns' started by Keela Too, Dec 27, 2017.

  1. Amw66

    Amw66 Senior Member (Voting Rights)

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    There is not a lot of robust evidence of it being effective for much
     
  2. GoldfishLivesOn

    GoldfishLivesOn Established Member

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    @Jonathan Edwards would you consider applying for chair of the GDG or any other advertised positions . Patients are trying to ask those they thought would be good to apply
     
    ladycatlover likes this.
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I don't have the time to take on something like that. I think I am also disqualified by having published views on ME/CFS treatment. I think they need someone who has no link to ME at all as of now.
     
  4. Barry

    Barry Senior Member (Voting Rights)

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    Yes, that's fine. I keep losing sight of the fact we are only dealing here with what should explicitly be - and not be - in the guidelines for ME.

    I was worried we might contradict Charles Shepherd where he says ...
    ... but no, I can see from what you say the NICE guidelines for ME should definitely not be prescriptive about supportive care detail for comorbid conditions; that would be for different guidelines.
     
    Esperanza, Inara, Skycloud and 5 others like this.
  5. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    Last time NICE sent out a message inviting patients to apply for the 3 patient rep positions. There was a form from memory to fill in.
     
    Inara, MEMarge, ladycatlover and 3 others like this.
  6. Andy

    Andy Committee Member

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    A few points made to me elsewhere:
    1. Activity management through the use of a heart rate monitor should be encouraged, as it's likely to be easy to underestimate the workload that a patient's heart is under, both by the GP and the patient. Not sure what, if any, supportive research there is for this though.
    2. In regard to moderate/severe paediatric patients, the fact that isolation may be required by them (due to PEM, sensitivity to noise and light, etc) should not be regard as safeguarding concerns. The same issues also may be encountered by adult patients but won't normally have the safeguarding concerns attached to them. Probably no supporting research evidence again, only patient evidence.
     
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  7. Sbag

    Sbag Senior Member (Voting Rights)

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    Maybe there could be a division in the way that "treatments" are listed - there could be one section for treatments for the actual disease (which would of course me minimal as there is nothing proven to treat it), there could be a section on experimental treatments (this could be included in the actual treatment section under a sub heading), then there could be a final section on helping to deal with the illness. This last section would be where CBT would go. It is "recommended" in many types of illnesses but in the others such as cancer it is described as an aid to coping with a long term or chronic illness.
    By leaving CBT in but properly categorising it might do more good in terms of acknowledging it but redefining it so that people can't make the mistake of saying it is a treatment which is what is currently happening.
     
    ladycatlover likes this.
  8. GoldfishLivesOn

    GoldfishLivesOn Established Member

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    Also is this a scoping workshop as that happens after the draft scope if one is helf

    Is this a scoping workshop ? As th NICe gudiliens develepmemt manual says if one is held then it isn’t after the draft scope and pathway diagram has been made in the previous stepsm of the scope develeopmemt . So of so why is it being held now and the draft scope and pathway diagram not been issued to stakeholders ? Also nice said they were doing a modified scope not a full scope , yet the deveelopment manual says a full update of the guidelines has either the old scope use data or a full new scope . So what part of the scope are they modifying and will it or won’t it be a full scope ?
     
    ukxmrv, Binkie4 and Keela Too like this.
  9. Sbag

    Sbag Senior Member (Voting Rights)

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    One thing that might be worth asking about would be the acknowledgement of the WHO categorisation.

    When the last guideline was put together NICE decided not to categorise ME. In their web pages it says that the Group discussed it but some members wanted to accept the WHO definition and others didn't. I have been trying to delve deeper on this and have been asking to see the group minutes from the previous guideline discussions. My reason was that it would be interesting to see how many voted each way. NICE response to me was that they aren't obliged to define the category of a disease, which I don't argue with. However I did read somewhere (and I can't remember where at this moment) that as a member of X (which is the bit I can't remember but will look for) - they are supposed to abide by the WHO definitions of diseases. So it seems that by not acknowledging it for ME they are going against their own organisational requirements. I have been trying to find out if this is actually the case but have not managed to get an answer yet but it might be an opportunity for the stakeholders to ask this as I see it as part of the core reason why ME is so miscategorised. The fact that the Government and Department of Health issued a statement on their website saying that they agree with the WHO categorisation, but NICE have dodged saying anything about it seems fully at odds with the responsibilities that NICE are supposed to carry out.

    The text from the CG53 guideline introduction says
    "Many different potential aetiologies for CFS/ME – including neurological, endocrine, immunological, genetic, psychiatric and infectious – have been investigated, but the diverse nature of the symptoms can not yet be fully explained. The World Health Organization (WHO) classifies CFS/ME as a neurological illness (G93.3), and some members of the Guideline Development Group (GDG) felt that, until research further identifies its aetiology and pathogenesis, the guideline should recognise this classification. Others felt that to do so did not reflect the nature of the illness, and risked restricting research into the causes, mechanisms and future treatments for CFS/ME."

    I have been in correspondence with NICE to try and access the minutes from the previous guideline committee but have not yet had anything useful. They have said to me that they have looked through the minutes and "Although the matters of aetiology and classification of CFS/ME were discussed (however briefly), ultimately aetiology was not included in the scope of the guideline and we don’t make a recommendation on the classification of CFS/ME."

    A previous response from them said
    "I can confirm that the aetiology of CFS/ME was outside the scope of our guideline. This means the evidence on aetiology was not reviewed in detail and ultimately, no recommendations were made by NICE on how CFS/ME should be classified."

    My bolded part indicates that they are trying to say they only discussed it briefly but if it was an important enough discussion that they decided to effectively go against the WHO classification then I would have thought there would have been more than a brief discussion on it.

    I am now going to file an FOI request to get the minutes as I am interested to see the discussion.

    However this seems to me to be one of the fundamental problems with how ME is taken by people in general and seems quite a basic need to sort out. It is not that we would want NICE to decide what category to place the disease in. This has already been done by the worldwide scientific community and is why NICE are supposed to abide by the WHO definitions (I think). So they are actively going against what they are supposed to do by not acknowledging it.

    As far as I am aware there is no official categorisation of ME as a psychiatric condition - please correct me if I am wrong there. It looks like all of the international categorising organisations all put it in the neurological bucket and it is only the scientific papers and articles which push it towards the functional somatic etc side. Please do let me know if I am wrong on this as I would like to get my onions in a row as it were.

    Also if anyone knows what the NICE responsibilities are then let me know but I will try to find it in the meantime as I know I have it somewhere but just can't remember :)
     
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  10. Keela Too

    Keela Too Senior Member (Voting Rights)

    I think there is material from (Welcome Trust) - edit no not them. Who do I mean? VanNess and co. Would need to search....

    Edit again Workwell Foundation!! Sorry haven’t had coffee yet

    Yes!!
     
    Last edited: Jan 12, 2018
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  11. GoldfishLivesOn

    GoldfishLivesOn Established Member

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    The treatment of comorbid conditions would also need to consider the contraindications of interventions with the metabolic dysfunction and impaired aerobic system , as well as the evidence bace and alternatives for those comorbidites eg personalised healthcare utilising a systems biology approach which also applies to mental health
     
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  12. Keela Too

    Keela Too Senior Member (Voting Rights)

    @Sbag
    I wonder if a neurological label is really useful. It’s not psyche, but is it really the right place?

    Agree it would be interesting to know how the discussions went.
     
  13. Sbag

    Sbag Senior Member (Voting Rights)

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    From all of the discussions I've had with medical people (not related to ME treatment) and insurance companies the one thing they all say is that ME is a psychiatric condition (unless they personally know someone with it). I can tell them that the government recognises it as a neurological condition but it doesn't have much of an impact as they all use the NICE quidelines which the NHS base everything on. And even though NICE don't say it isn't psychological the use of CBT and GET imply a mental health angle.

    Neurological implies more of a physical or biological component. The fact that most people still think it is a mental health issue makes me believe that by being unclear about where it sits, NICE are making it harder for us.

    It's the stuff we all come across and although it wouldn't solve anything I think it would really help clarify any arguments or discussions that we have about ME with other people, rather than having to rely on the statement on the government page which no one sees unless they go looking for it.

    I was talking about ME with our GP practice nurse last week and she said "well it is a mental health problem isn't it". I asked her why she thought that and it was because any patient from our practice with it is referred to a psychiatrist. He is actually a neuropsychiatrist and does believe and treat it as a cellular organic problem. But the fact that they think it is a normal type of psychiatrist gives them the view that it is mental health. I told her about the Government and WHO classification and PACE etc and she was horrified that she had thought the way she did and that there was so much misinformation about it. I suppose it is similar to all the reactions we have heard about from medical professionals after they have seen Unrest.
     
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  14. Keela Too

    Keela Too Senior Member (Voting Rights)

    Yes. @Sbag

    I have used the WHO / neurological disease point myself, It’s just that everything around this disease feels so slippery. What ever we do is misrepresented, reframed and used to the psyche advantage. They are experts at meaning manipulations. :(
     
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  15. Barry

    Barry Senior Member (Voting Rights)

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    Indeed. It might well mean that even if CBT might be applicable for comorbid issues, even standard CBT might be a risk factor for PwME, and might need to be something more bespoke to accomodate much reduced energy availability, and risks of harm.
     
  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I too am a bit sceptical about the usefulness of a WHO decision to call it neurological. The WHO is a bureaucratic rather than a scientific organisation and from the scientific point of view the classification is 'don't know'.

    But when I was approached by Cochrane to look at reviews the approach came with an apology for the fact that the review was under 'Mental Health Team' when perhaps it should not be. I very much agreed with this and was pleased to see that Cochrane was worried about this too. If the same applies to NICE then I think it is a valid point that ME/CFS should not be considered under 'Mental Health'. But if NICE decide not to classify it then I see no real problem.
     
  17. Adrian

    Adrian Administrator Staff Member

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    I would prefer a genuine 'don't know' category as it reflects the lack of understanding and perhaps could be used to push for more research. But the concern with a 'don't know' category is that psychiatry has tried to grab and control this through MUS; an area that just seems to be based on a power grab and lacking any scientific understanding.
     
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  18. GoldfishLivesOn

    GoldfishLivesOn Established Member

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    NICE should not again be useing Delphi consensus methodology to make clinical recommendations based on opinion and clinical scenarios in the presence of no research and research gaps for sever and children and no research for activity management , which is not evidenced based , extrapolated recommendations to patient populations which have not been studied and yet provided these interventions in clinics and did not allow them to be refused and were forced on patients , and does not seem to adhere to the law change to consent where the selection of treatment and opinion on benifit and risk is now evaluated by the patient once they are presented with all risks , benifits and alternatives according to all research , including the right to refuse . Reliance on a guideline is alos no longer permitted . Delphi consensus methodology was piloted in the development of the 2007 guidelines and should not be used again due to the law change to consent Montgomery vs Lanarkshire

    The guidelines develepoment scope and members of GDG and stakhokders , also do not include clinicians providing precision medicine / personalised medicine that utilises a systems biology approach and investigations and treatment at a molecular level , which already exists , lab tests are already available . Apart from Breakspear hospital which is a stakholder . Precision medicine , personalised medicine utilising a systems biology approach needs to be present and represented
     
    Last edited: Jan 12, 2018
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  19. Marco

    Marco Senior Member (Voting Rights)

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    People coped with long term illnesses well before CBT came on the scene and I'm not convinced it offers much more than tea and sympathy. It does seem to be pretty ubiquitous these days so what do I know.
     
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  20. Adrian

    Adrian Administrator Staff Member

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    I think tea and sympathy may be far better. CBT is about getting people to change thoughts and behaviours in a fairly mechanistic way.
     
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