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NICE Guideline may be placed on 'static' list - and only reviewed every 5 years

Discussion in 'General ME/CFS News' started by Firestormm, Sep 25, 2013.

  1. Firestormm

    Firestormm Guest

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    The CFS/ME Guideline might be placed on the 'static' list and then only routinely reviewed every 5 years. NICE are consulting with stakeholders:
    Posted by Dr Charles Shepherd, ME Association Facebook:
  2. biophile

    biophile Places I'd rather be.

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    Even without rocking the boat with the current recommendations i.e. CBT/GET for mild to moderately affected CFS patients, the NICE guidelines should still be updated to reflect the evidence that these therapies do not generally lead to improvements in physical activity levels, employment, or total service costs etc, with poor outcomes for the walking test.

    I do not recall exactly what the NICE guidelines say about the expected outcomes for CBT/GET, and someone could still argue that subjective improvements for a minority of patients is still the best "evidence based" treatment available, but the above caveats are important for providing context to the evidence and making expectations more accurate.
  3. Wildcat

    Wildcat Senior Member

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    The only Charities or 'Patient Groups' who 'approved' the NICE Guidelines, were AFME, AYME and The Sussex CFS Society Charity.

    All other ME Groups and charities rejected the NICE Guidelines as 'Unfit for Purpose';
    Roy S, peggy-sue and biophile like this.
  4. Wildcat

    Wildcat Senior Member

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    What relevence is NICE - When we have the 2003 Canadian Concensus Criteria (the CCC)!
    ..

    . The CCC has now been in use as diagnostic and Research Criteria for a full decade.

    .
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    If I remember correctly, the last review was postponed, so the guideline could be said to be overdue for review already.

    The section of the guideline here about treatment says:


    This section says


    I'll look at some more but will post this now as I am having trouble with formatting and don't want to lose it!
  6. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    A few more 'gems' from the Guideline.

    From previous link:


    From another page

    At least the last bit makes sense, but the rest indicates that they really don't get it. I reckon most, perhaps all, of us would benefit from printouts of consultations - not just the severely-affected. (Ditto people with many other conditions too)

    The bit about some interventions being thought of as harmful appears in the section about severe ME, but it's not clear whether they are citing more general ME/CFS patient groups.

    Maybe others can pull out some other interesting sections - I'm a bit too tired now.
    Wildcat likes this.
  7. Firestormm

    Firestormm Guest

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    MeSci et al.

    I think the point is that by October 23 (?) stakeholders need to submit EVIDENCE that might sway NICE from taking this Guideline into Static Status.

    I believe the MEA will be making a submission of patient evidence based on the comprehensive patient survey they carried out last year, and will be making further submissions from e.g. Julia Newton's paper on misdiagnosis. In order to change anything in the Guideline they will require EVIDENCE.

    Something like the results from that survey will help, as NICE as meant to take note of patient evidence too; but research evidence that runs contra to the NICE Guideline is pretty scant.

    IN 5 years time - 2016 - consider what might be available. Even if before then something 'breaks' then NICE will consider it if it is important enough e.g. Rituximab.

    Kind of finding it hard now to think of anything of significance that has been produced since 2011 which might fundamentally change the guideline though.

    Any thoughts?
  8. Roy S

    Roy S former DC ME/CFS lobbyist

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    I'm wondering how long this has been publicly stated and why it hasn't been properly researched. It seems rather important.
     
    "It is not known how best to measure improvement scientifically for people with CFS/ME, and how much of an improvement is significant. More information is needed on functional outcomes such as return to work or education, return to normal family life or social activities, or increased self-esteem, to inform future estimates of the cost effectiveness of treatment."
     
     
    (clears throat) and on a more important subject... Why is the National Institute for Health and Care Excellence referred to as NICE instead of by the accurate acronym NIHCE? "Nice"? Isn't "nicey" good enough? How about "nicey nice" or if one letter is omitted how about IHCE "icy"?
     
    I've long wondered whether George Orwell had a good sense of humor.
    Wildcat likes this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    The answer is rather boring and historical. It was originally the National Institute for Clinical Excellence, if I remember rightly, but the government is trying to integrate the health and care systems so changed the long name, but that makes it hard to pronounce so people continue to pronounce it 'nice'.

    Maybe we could suggest a better name...let's see...Nitwits who Ignore Credible Evidence, also known as the Nitwits who Implement Crap Evidence? I'm sure this can be improved - I'm looking for a word beginning with C that means scientific or similar, but my brain is still half-asleep.
    Valentijn, Bob and Roy S like this.
  10. peggy-sue

    peggy-sue

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    My favourite was from a member of another forum, called Dolphinsezzy. I'm not sure she isn't here under another name.
    Nincumpoops Implementing Crap Evaluations.

    Folk are aware of the definition of a "centre of excellence" aren't they?

    It means they have a certain number of academic staff. I'm not sure what the number is, but it is just a number of staff.

    Abolutely nothing to do with high standards.

    This part of the guidelines must be removed, it is positively harmful. (underlining mine)

    "1.7.2.3 When managing setbacks, healthcare professionals should put strategies in place that:
    • Include relaxation and breathing techniques.
    • Maintain activity and exercise levels if possible, by alternating activities with breaks and pacing activities, as appropriate."
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  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Absolutely. People having setbacks need to REST.

    Another thing that is totally inappropriate to ME and based on little or no evidence is advice to limit daytime sleep. This is part of 'sleep hygiene' theory.

    Most people with ME should, IMO, sleep when they feel the need. It is very important for health to get enough sleep, and if our sleep hormones are so upside-down that we can't get enough at night, we should be allowed - indeed encouraged - to make up for it during the day if we can. I am not aware of any evidence that the imbalances and diurnal-rhythm disturbances typical of ME can be re-set using 'sleep hygiene'. 'Sleep hygiene' also typically says that you mustn't read or watch TV or use computers in bed. Personally I have often found that things like this actually help me sleep, and I have fallen asleep with the radio on quite a few times. It relaxes me and distracts me from worries and physical discomforts.

    I don't know whether those who are sleeping for most of the day should be advised not to. I would like to see evidence for what works and what doesn't before endorsing something that may be harmful.
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  12. peggy-sue

    peggy-sue

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    I agree completely.
    For those of us who need to sleep loads - well, we need to sleep loads.
    For those of us who cannot sleep, we have to grab whatever sleep we can, whenever it is possible.
    anniekim and Bob like this.

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