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Anyone have any info on NICE previously saying they weren't updating guidelines due to PACE trial results?

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by Tom Kindlon, Mar 16, 2018.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    We think we have got what we need now. Thanks.

    I'm working with a few people to write something about the PACE trial. Can anyone recall, ideally with a link, NICE saying previously they were not updating their guidelines due to the results of the PACE trial?

    I think it refers to keeping CFS/ME on their static list.
    Last edited: Mar 17, 2018
    dangermouse, Barry, Skycloud and 5 others like this.
  2. ukxmrv

    ukxmrv Senior Member (Voting Rights)

    Was it this letter to Invest in ME maybe?

    Dear Ms McCall

    Thank you for your letter.

    As you are, I’m sure, aware the NICE guideline on ME/CFS was published before the PACE trial was seriously under way. Our recommendations were based on a body of research which preceded the PACE study. In our most recent review of the guideline, and cognisant of the controversies regarding the interpretation of the PACE results and methods, we assessed the evidence with, and without, the PACE results and the trial made no difference to the conclusions. Therefore, I cannot accept at this stage that reports of flaws in one study invalidate the results of all the studies in this area.

    I appreciate that the existing recommendations are a matter of concern to some patients and groups and we will give some consideration to whether we need to modify or omit any of the existing recommendations during the development of the new guideline. We will certainly consult the new Committee members, when appointed, on this and a number of other issues.

    In the meantime, I will keep your letter on file for future consideration and reference.

    Best wishes


    Professor Mark R Baker
    Binkie4, Daisymay and Joh like this.
  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    I was hoping for something more clear cut than that.
  4. Esther12

    Esther12 Senior Member (Voting Rights)

    This stuff isn't 100% clear cut on "due", but worth citing and shows the influence of PACE imo.

    This MEA news piece: http://www.meassociation.org.uk/201...ine-on-mecfs-next-review-will-be-august-2013/

    ... which links to this piece from NICE which has plenty: http://www.meassociation.org.uk/wp-content/uploads/2011/03/53532.pdf


    The above March 2011 review was then cited to justify moving the guidelines to the static list, eg:


    This was the PACE 'outcomes' page:


    This from QMUL [edit: this QMUL REF2014 submission gets me fuming every time I read it. I can't find anyway of checking whether REF2014 fell for this BS in their assessment of QMUL or not]:


    This was reference 8. NICE affirming support of GET. www.nice.org.uk/nicemedia/live/11824/53532/53532.pdf

    It's now off-line, but the archived page shows it's the same document the MEA hosted that I posted above: https://web.archive.org/web/20110317205701/www.nice.org.uk/nicemedia/live/11824/53532/53532.pdf

    The SMC had this quote on the release of PACE results:


    I expect you could find more if you dug in.
    Last edited: Mar 16, 2018
  5. WillowJ

    WillowJ Senior Member (Voting Rights)

    Not sure if this is exactly what you are looking for:

    Last edited: Mar 17, 2018
  6. Stewart

    Stewart Senior Member (Voting Rights)

    You may be referring to the 3 year review of the CG53 guideline. Although the stakeholder consultation took place in November 2010, NICE held off publishing the review decision until March the following year so they could include the PACE results. You can read the review decision here - paragraphs 13 and 17 are probably of most interest to you.

    ETA ...and I've just realised that Esther12 has already given you another link to the same document. Sorry for the duplication.
    Last edited: Mar 17, 2018
  7. Esther12

    Esther12 Senior Member (Voting Rights)

    That response came before the PACE trial results, but it does give me the perfect excuse to link to another annoying thing from Professor Peter Littlejohns I was reading today:


    "Who values evidence" - he seems to assume it's him.

    He starts with a reference to an appallingly poor Wessely paper:

    "In his thoughtful ‘reality check’ on the future of healthcare Roy Moynihan lists 10 reasons to be optimistic.1 His first four developments are particularly pertinent to the concerns addressed in Smith and Wessely's paper.2"

    2. Smith C, Wessely S . Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development. J Neurol Neurosurg Psychiatry Published Online First: 17 November 2012 doi:10.1136/jnnp-2012-303208. Google Scholar

    Then after a while of praising NICE he loops back around to CFS:

    "Using this double approach the NICE guidelines programme has produced over 150 guidelines in its first 12 years and was only once subject to a judicial review—which it won on all counts. Not surprisingly it was Clinical Guideline number 53 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy)."

  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    We think we have got what we need now. Thanks.
    WillowJ, Lidia, Sasha and 1 other person like this.
  9. Sbag

    Sbag Senior Member (Voting Rights)


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