Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Campaign to get the NHS to review the NICE guidelines

Discussion in 'Advocacy Projects' started by msf, Mar 13, 2015.

  1. biophile

    biophile Places I'd rather be.

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    NICE have a duty to reflect the state and limitations of the evidence. At a bare minimum, the NICE guidelines must be updated to reflect the evidence that CBT/GET does not improve a range of objective measures.
     
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  2. Valentijn

    Valentijn Senior Member

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    Regardless of his intentions, Dr Miller is a barrier to any sort of progress. He seems unable to comprehend that PACE might be wrong or completely untrustworthy, or that subjective measurements are meaningless to ME/SEID patients in the absence of objective improvements.

    Any idea if he's close to retirement?
     
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  3. charles shepherd

    charles shepherd Senior Member

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    Yes, your first point is correct

    And you can argue the point about lack of objective measures of improvement in relation to clinical trials that have assessed CBT and GET

    But when it comes to evidence, and what NICE regard as evidence based medicine, they mean overall results from randomised controlled trials (e.g. the PACE trial) that have been published in reputable medical journals

    Criticism of the PACE trial in the form of reports, letters to medical journals etc and patient evidence in the form of surveys that are carried out by the charity sector are regarded as very low level evidence, or not event considered at all

    So as far as NICE is concerned, and I am obviously plating devil's advocate here, the overall results from RCTs on CBT and GET support their conclusions and recommendations in the 2007 guideline and the only evidence on treatment since then (i.e. the PACE trial) continues to support their position
     
  4. user9876

    user9876 Senior Member

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    I would have thought that the PACE results suggest the biggest gain is from the standard medical treatment including drugs to help with various symptoms. But I seem to remember reading somewhere that most patients referred to specialist centres never actually get to see a doctor. Which is also a problem when Dr Miller says about misdiagnosis.
     
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Can you cite some studies that found improvement from CBT/GET using objective measures? Preferably studies that use more-reliable selection criteria than Oxford?
     
  6. charles shepherd

    charles shepherd Senior Member

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    Simple answer is no - because I don't have time to check through all the published clinical trials!

    Maybe someone would like to take up the challenge?

    But just in case you have missed the point I am making:

    I'm not trying to defend these clinical trials. I'm just saying that if you trawl through every single clinical trial paper that has been published on CBT and GET in ME/CFS over the past 20 years or so, you may well find that some research groups have included what might be regarded as an objective measure of improvement in their outcome data
     
  7. user9876

    user9876 Senior Member

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    The problem is that the NICE committee not carefully reading papers and thinking through the methodology, the many flaws and protocol changes. If the NICE guidelines are re-examined it would be good if they were to demand the PACE trial data as defined in the original protocol rather than what was published in the Lancet and other journals. That of course won't happen.

    At the least evidence of differences between subjective and more objective outcomes should lead readers to ask questions about the methodology of trials like PACE. But we are in a world where evidence based medicine relies on having a single 'pre chosen' measure rather than being based on a theory of evidence that allows multiple measures to be weighed against each other.

    In the end I get the impression NICE is basically a collection of 'experts' who basically assert an opinion which is loosely supported by material they review. The question then becomes who is on the committee. I see no point in trying to get the guidelines reexamined unless the people looking change.
     
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  8. Valentijn

    Valentijn Senior Member

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    Some have used objective measurements, most famously several trials by the Nijmegen BPS group in the Netherlands. After spinning their conclusions and sitting on the data for several years, they finally revealed that subjective improvement after CBT/GET did not result in any objective improvements.

    Of course, they did not state it in that manner - they instead proclaimed that "fatigue" was the important symptom, and the negative actometer results merely showed that increased activity levels don't mediate the supposed curing of "fatigue".
     
    Last edited: Mar 16, 2015
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  9. eafw

    eafw Senior Member

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    This is quite worrying actually, that NICE will accept PACE without question despite the glaring flaws. Any old rubbish will do as long as it's a big trial and they persuade someone to publish it ?

    And then people like Dr Miller repeating that it is "evidence ... for CBT and GET" when it is nothing of the sort. BACME have undue influence over the treatment we get, the NHS clinics nearly all subscribe to the CBT/GET approach and it is doing real harm to us.
     
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  10. charles shepherd

    charles shepherd Senior Member

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    Again, it all boils down to what happens out there in the real world.

    Not what should happen. Or what we would like to happen…...

    NICE appoint a group of doctors who agree to work on the development of a guideline

    They all have a thousand and one other roles and positions and have to fit this (in theory) quite demanding work in with all their other work. I know what it's like…...

    They have homework, briefing papers, and some full day or half day face to face discussions at NICE

    They don't have time to go through every single clinical trial and discuss the methodology, flaws and weaknesses

    They leave this to some academics - who are paid to carry out a systematic review of the literature and produce a long report which they are then supposed to read and discuss

    In the case of the 2007 NICE guideline, this work was handed to York University - hence the York Review
     
  11. charles shepherd

    charles shepherd Senior Member

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  12. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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  13. Esther12

    Esther12 Senior Member

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    Even though that's the way things currently stand, it's important to go on pointing out how the flaws in this system lead to patients being mistreated though. While I understand that looking closely at the evidence may be a tedious chore to those important people who hold positions of authority over patients, their failure to do so does cause real harm and I think that this should go on being pointed out to them.

    Their approach to 'EBM' for CBT and GET is the same approach that allows the funding of homeopathy hospitals, and that is shameful quackery.
     
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  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    NICE shouldn't actually be taking any notice of unblinded trials in this context and I am fairly sure that all trials of CBT and GET are unblinded to a degree that makes the trials useless. RCT is not enough if the endpoints are not 'objective' in the sense of a blood test. Even objective in the sense of not going back to work is not enough to allow unblinded studies. So although I agree with Charles that NICE has to follow 'hard trial evidence' they should not actually be including the trials in existence. If these were trials of drug therpies they would be thrown in the bin immediately.

    But Charles made another point earlier that I think has to be taken very seriously. Whatever NICE says it is a mechanism for providing clinicians with a 'level playing field' for getting on with their work. If the clinicians believe in CBT and GET then unless NICE says 'No, you cannot use that because there is no evidence' which is what they regularly do for drugs but is unlikely to happen here because then patients get no treatment at all, then the clinicians will go on using CBT and GET even if NICE waters things down and just says they are unproven but might be useful and might even be bad for some people. My own feeling is that the battle to win is to persuade the clinicians that the evidence for CBT and GET as specific therapies is empty and to do that they need to be persuaded to think about the disease a different way. They are not all totally closed to such a rethink, but they are not rushing for the door as yet.
     
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  15. ukxmrv

    ukxmrv Senior Member

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    I think that there were two York reviews for NICE. The one I have uploaded here was the 2005 version.

    @MeSci I've never seen a thread on the York review but that may be because it was long before this forum
     

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  16. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Who would do this? I don't rate my chances of persuading a GP to even read a summary of evidence. I have tried before with regard to different issues.
     

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