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NICE guideline for ME/CFS is unethical – Dr Diane O’Leary, Kennedy Institute of Ethics | 23 August 2

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Aug 23, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    The NICE guideline for ME/CFS is unethical – Dr Diane O’Leary, Kennedy Institute of Ethics | 23 August 2017

    When the Forward-ME Group met with Dr Diane O’Leary from the Kennedy Institute of Ethics, Washington D.C., it was with the NICE guideline on ME/CFS very much in mind.

    More on this story, and the Minutes from this important FMG meeting at the House of Lords, on the MEA website:

    http://www.meassociation.org.uk/201...y-kennedy-institute-of-ethics-23-august-2017/

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  2. AndyPR

    AndyPR Senior Member

    Content of http://www.meassociation.org.uk/201...y-kennedy-institute-of-ethics-23-august-2017/
     
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  3. Barry53

    Barry53 Senior Member

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    If a patient is being advised by their GP about their ME, and that advice ignores any biological underpinnings, then the GP is clearly withholding highly pertinent information from their patient. Any consent the patient may then give regarding treatment offered is clearly going to be based on wilful misinformation. If NICE are seen to be advocating that, when such a gross dereliction of duty has been so clearly pointed out to them by such a respected expert on medical ethics - on their heads be it.
     
  4. Esther12

    Esther12 Senior Member

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    It's hard to judge from just that summary, but I'm not sure how effective O’Leary's approach to this will be, which seems to really emphasise the biological/psychological divide in a way that could be unhelpful imo (maybe I'm misunderstanding, based on very limited information)... although I do think that the 'informed consent' aspect is important and could be worth pushing a lot harder on.
     
  5. trishrhymes

    trishrhymes Senior Member

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    ''Prof O’Leary said that NICE’s revised guidance should be neutral as to whether CBT/GET or the biomedical approach is better for patients.''

    NO NO NO!

    NICE could claim the present guidelines are neutral - they talk about patients having a choice of whether to use CBT / GET.

    We need guidelines that spell out the danger of GET or don't mention it at all.
     
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  6. docsimsim

    docsimsim

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    Agree, I find it totally despairing that after decades of patients saying that they find CBT/GET at best ineffective and at worst harmful, we still have to 'pussy foot' around this issue. ME is a multisystemic neuro immune illness, it is due to physical pathology not psychology. Behavioural
    treatments have no place as the primary treatment for ME, just as they don't have a place in primary treatment of diabetes, MS or leukaemia
     
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  7. JohnM

    JohnM Senior Member

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    Naff as is it is to refer to my own thread from a month or so back Barry - NICE Guidelines Disclaimer - I would suggest that NICE together with the DoH, NHS England, NGC/NCGC, leaders of the various Royal Colleges and others are jointly responsible for willfully misleading/misinforming GP's and other Health Professionals .. a truly byzantine set of relationships, in which they seek to deny any responsibility for damages arising from use of their 'biased' guidance, or otherwise.

    I think it likely that these byzantine relationships also have ethical implications for the treatment of #PWME, and potentially for all NHS patients?

    I couldn't agree more Trish. I would only add that CBT is not without its dangers also; especially the 'directive' versions of CBT which includes aspects of GET in delivery, though would more probably be better referred to as GAT (Graded Activity Therapy) in my anecdotal experience.

    Wishing everyone improved health and every happiness. John
     
  8. ukxmrv

    ukxmrv Senior Member

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    I'm wondering how much she knows about ME and CBT/GET history

    "Prof O’Leary referred to what she called “The Middle Way”. She explained that in 2007 a doctor would say to a patient “CBT or GET are best for you” because that was the consensus.

    In 2017 that is no longer the position – therefore the Guideline as it stands is unethical."

    Strangely this looks as if it is from the ForwardME response to the recent NICE surveillance

    "In 2007, NICE guidelines for the management of CFS/ME reflected a global consensus among researchers and health authorities about the nature and optimal management of the condition. In 2017, however, that is no longer the case. "

    I don't know if this is a strategy that is being adopted to try and reason with NICE to get the guideline changed, but I find it a problematic argument given that few doctors who treated PWME and PWCFS in 2007 would have used CBT and GET and researchers with an interest in bio-medical treatments would not have been interested either.

    There was no consensus in 2007 it was simply foisted on patients and the NHS by a powerful lobby who were tragically wrong.
     
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  9. A.B.

    A.B. Senior Member

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    O'Leary can be excused for assuming that there must have been some evidence and sense behind CBT/GET at some point in the past.
     
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  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I fear that Dr O'Leary has missed the point and I worry that this will just fog the issues. No new evidence has appeared since 2007 as far as I am aware. Consensus is not evidence, or indeed the basis of ethics. What matters is actual evidence and the poor quality of the evidence for CBT and GET was in plain sight right from the start. NICE had no good reason to recommend CBT and GET in the first place.

    Moreover, none of this has anything to do with a distinction between psychological and biological treatment or disease model. It is entirely about the evidence for efficacy of one or other treatment. Whether or not rheumatoid arthritis is psychological or biological has nothing to do with what NICE recommends for it. Same for ME.

    I am concerned with perpetuation of the myth that the challenge to PACE etc. is because patients want to be seen as having a biological disease. It needs to be shouted from the rooftops that the challenge is because PACE provides no evidence of efficacy. If it had, then CBT and GET should be provided whatever people think about the cause of the illness.
     
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  11. A.B.

    A.B. Senior Member

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    I think it's more nuanced than that. First, the part in red is how the PACE authors misrepresent us. In my view there is some opposition to psychiatry, but it's not driven by "being unable to accept to suffer from a mental illness". It's because psychiatry has got it so wrong. In theory, both psychology and psychiatry could do a lot for us patients, but in both professions there is such a fundamental misunderstanding that they are a negative influence. This is independent of whether CBT/GET work. It's related to how they view the illness and the patient at a very basic level (with lack of respect). These views are then taken up by the rest of society and mass neglect & abuse takes place. Of course, "the authors don't respect patients" isn't a valid argument against the PACE trial. It's still an important point.

    Edit: one could also argue that bad science is linked to lack of respect for patients. It's hard to imagine anyone genuinely wishing the best for patients behaving like the PACE authors do.
     
    Last edited: Aug 24, 2017
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  12. Daisymay

    Daisymay Senior Member

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    I think what O'Leary/Forward ME are trying to do is very sensible. They have tried and tried for years to get NICE to take the biomedical evidence, PACE etc into account and reject the BPS view but to no avail.

    So how can patients be protected? And how can the medical professions be informed of the scientific evidence?

    They seem to be trying to do so by changing tack, by making NICE and the NHS live up to their ethical and legal obligations.

    With regards consent, pre 2015:

    "a doctor would not be negligent if the information given to a patient about treatment and/or a procedure was compatible with that which would be given by a responsible body of medical opinion, provided always that standard was considered reasonable by a Court."
    ( http://www.themdu.com/guidance-and-...t-ensure-patients-are-aware-of-material-risks )


    So in the past the BPS view of ME/CFS could be deemed to be a responsible body of medical opinion, but in 2015 there was a landmark change to the law of consent, so now:

    " The doctor is under a duty to take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative or variant treatments. The test of materiality is whether, in the circumstances of the particular case, a reasonable person in the patient’s position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it" ( para 87, https://www.supremecourt.uk/cases/docs/uksc-2013-0136-judgment.pdf )

    In other words there is now a legal requirement for patients to be fully informed of all the material risks involved in any treatment and the information must not be limited to the views of some doctors or indeed guidelines based on such limited views.

    From Forward ME's submission to NICE they seem to be saying NICE is under an ethical and legal obligation to ensure that not just patients but medical professionals too are fully informed of the facts, that they can't just focus on one (scientifically invalid) view of ME/CFS in their guidelines.

    I've attached the Forward ME submission to NICE, it's a short but concise document.

    Edited - Sorry I forgot to say, they are undermining the NICE guidelines by using the law and ethics. Patients fully informed would hopefully not choose to undertake CBT/GET. And medics fully informed of the facts would hopefully not recommend their patients do CBT/GET so in effect you are undermining the whole basis of CBT/GET and the NICE guidelines as they stand.
     

    Attached Files:

    Last edited: Aug 24, 2017
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  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    But that is really my point - the views of the BPS lobby are independent of whether CBT and GET work and NICE is ONLY about whether CBT and GET work. The NICE guidelines are not so much unethical as unjustified on medical evidence grounds.
     
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  14. Keela Too

    Keela Too Sally Burch

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    The premise under which CBT & GET are offered is that patients have false illness beliefs.

    Ethically I would say that that assumption needs to be explained to patients that are being offered these therapies.

    If it is not explained then patients are not fully informed about their treatment - and that is in my view totally unethical.

    People have a right to have whatever treatment they are offered fully explained.

    If doctors had to say "The treatment I'm about to offer you, is based on the assumption that you only "think" you are ill." Then how many patients would accept the psychosocial treatments over a biomedical one?
     
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  15. Wonko

    Wonko Senior Member

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    The other side.
    All of the sane ones obviously, as anyone who didn't (accept the psychosocial treatments) is ignoring the opinions of "experts" in "evidence based medicine" and is therefore of questionable sanity. Tah Dah.
     
  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The problem as I see it is that NICE is not obliged to take any notice of any stuff about biomedical evidence or what a committee in the US says. In fact it is their job not to be sidetracked by any of that. They have the simple obligation of deciding what treatments have a good evidence base in terms of cost-effectiveness. They then recommend that. Doctors are then expected to make up their minds whether to follow that recommendation. I do not think 'patient choice' is a real issue here. The NHS is an insurance system that can only undertake to provide what can be justified by evidence. Since we do not really have any evidence for efficacy of ME treatments I am not sure where choice comes in. There is the choice not to have a treatment but that is not something NICE is responsible for.

    I agree that people with symptoms suggestive of ME should have adequate investigation and the guidelines may discourage that.However, the point of investigation is to diagnose other conditions masquerading as ME. If the diagnosis of ME is established then further investigation does not contribute.
     
  17. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    That I think is a very fair point for CBT. I am not sure it is quite true for GET since that is in part based on the idea of deconditioning and fear of exercise. The fear is of course real. The question is whether it is justified.

    The problem here is that if CBT worked then I am not sure that the business about explaining to patients follows. In psychiatry in general explaining to people who are irrational often is of no help and in order to get people better one may have to skirt round it. I say this with some feeling because my wide is only alive today because her psychiatrists ignored explaining and got on and gave her ECT under section.

    I do think there are ethical issues here but I still think they have nothing much to do with NICE. NICE has to decide if there is good evidence for the benefit of a treatment. The only proper reason for them changing their mind is the realisation that the evidence is no good. Distraction from that is likely to muddy the waters and NICE are likely to keep things simple and leave the rules as they are.
     
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  18. docsimsim

    docsimsim

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    Hi Jonathon. There are patient surveys carried out by several national ME associations involving 1000s of participants, showing that GET/CBT are ineffective and even harmful. Surely NICE should take this evidence on board? I'm not aware of any counter surveys involving large patient numbers showing CBT/GET to be beneficial. And of course there's the PACE trial and we all know that on reanalysis the PACE recovery figures were found to be bogus. NICE is continuing to recommemd these treatments despite patients saying for over 20 years that these don't offer any benefits.
     
  19. Keela Too

    Keela Too Sally Burch

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    Our real trouble with NICE however is their failure to properly consider what type of evidence is reasonable. All very well saying evidence based medicine but the cherry picking of the evidence and the inclusion of biases means we are constantly thwarted in attempts to clean their act up. I mean what right minded reviewer thinks it's okay just to read abstracts??
     
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  20. Barry53

    Barry53 Senior Member

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    I appreciate that point, but something feels wrong to me. The notion of "new evidence", surely, should not just encompass additional supporting evidence, but also subsequently-negated previously used evidence. Else it's a mockery.

    Surely evidence that is subsequently proven to be invalid, only becomes so by the introduction of further new evidence. The allowable new evidence must include any new evidence that calls previously used evidence into question.
     
    Last edited: Aug 24, 2017
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