1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

NICE Guidelines Review - Aug 2013

Discussion in 'General ME/CFS News' started by user9876, Aug 26, 2012.

  1. Bob

    Bob

    Messages:
    7,528
    Likes:
    8,785
    England, UK
    Thanks Firestormm. He seems to contradict himself. He seems to suggest that only published RCTs will be considered, and then he says that the MEA will be presenting 'evidence' based on a patient survey, presumably unpublished.
  2. Firestormm

    Firestormm Senior Member

    Messages:
    5,794
    Likes:
    5,885
    Cornwall England
    Lol yeah it does read like that doesn't it?! I think he means research evidence for 'new' treatments or direction i.e. he was speaking on a thread about the paper I linked to. People were I think asking whether this kind of research would be considered by NICE. Make any sense? Sorry. Bit wonky tonight. So new treatments based on research would require RCT evidence and I guess new researcj would have to be 'good enough' to pass muster (my words).

    The MEA patient survey was about CBT and GET and experiences - if NICE review PACE (I don't think they will as they already have in the update last year, but anyway): they might take into account the results from the MEA's more thorough survey that was completed recently - to be published early 2013.

    Did you do the survey, Bob? I did and it was bloody complex. Still if it produces some helpful results it will have been worth the effort.
  3. Bob

    Bob

    Messages:
    7,528
    Likes:
    8,785
    England, UK
    Thanks Firestormm. That's helps to clarify where he's coming from.

    Yes, I did participate in the survey. But I really don't see how it can help the NICE guidelines, as it isn't an acceptable quality of 'evidence' for NICE, and the PACE Trial gives them the most high-powered evidence re CBT and GET that they will consider. But maybe the MEA have something specific in mind with it, possibly in terms of real-life clinical patient experience.
    Firestormm likes this.
  4. Firestormm

    Firestormm Senior Member

    Messages:
    5,794
    Likes:
    5,885
    Cornwall England
    When I was completing it - I do remember thinking 'what is this going to be used for? In what way will the complied data be of use and to whom?'

    You are right I think. Whilst NICE will listen and take some notice of patient experiences - it can I feel do very little to e.g. ensure the way in which CBT is delivered in clinical practice. Similarly NICE cannot force GP Commissioning Groups to put ME Services into their plans.

    Whatever there is or isn't in the actual Guideline is surely what will be reviewed at this time.
  5. Firestormm

    Firestormm Senior Member

    Messages:
    5,794
    Likes:
    5,885
    Cornwall England
    What a pain in the arse :mad: That survey took me an age to complete. I'm certain the results won't go to waste but it's a nuisance that NICE choose now to revise their procedures. This doesn't apply uniquely to CFS/ME in so far as I read the reply; but it means that the Review as we expected it will not now take place:

    The bolded part is particularly worrying at this point. Hopefully some clarification will be forthcoming soon.
  6. Min

    Min Senior Member

    Messages:
    1,052
    Likes:
    775
    UK
    NICE are probably waiting for the results Prof Peter White's forthcoming research into graded exercise and mild vaguely defined fatigue. No doubt GET will yet again be lauded as a 'cure' for M.E. with no proof that it is anything of the sort.
    Valentijn likes this.

See more popular forum discussions.

Share This Page