No change announced to NICE Guideline on ME/CFS – next review will be August 2013

March 15, 2011


The National Institute for Health and Clinical Excellence will not be carrying out a major review of their August 2007 Guideline on ME/CFS – having delayed the decision until after the results of the PACE study were published last month.

Announcing the no further review decision to stakeholders yesterday, NICE said they won’t be looking at the guideline next until August 2013.

Click HERE to find out how the organisation justifies its decision not to proceed with further review of a Guideline which – when it was published three and a half years ago – was criticised by the ME Association and other ME charities as being not fit for purpose. The link will take you to a seven-page document written by the Centre for Clinical Practice at NICE.

5 thoughts on “No change announced to NICE Guideline on ME/CFS – next review will be August 2013”

  1. Phew! Well AT LEAST they didn’t think PACE was worth the paper it was printed on…

    Will read your link later Tony.

    Good news though in that respect 🙂

  2. No retrovirus, move along. What a joke! Anyone care to use an assay that has been proven to detect the virus?

    It is going to cost too much, better to leave people sick and let the thing spread.

    There was insufficient evidence for CBT and GET in 2007, the PACE trial for fatigue and not ME/CFS does not change that, as it failed. So how can it have any impact on this disease and guidelines that are claimed to be about this disease. Can we get some guidelines for ME/CFS now? And have a development group who are actually experts in the disease?

  3. ’13. Eleven stakeholders disagreed with the review proposal [i.e. that the Guidelines should not be changed] on the basis that the guideline should focus on the aetiology and pathogenesis of CFS/ME, and that treatments/interventions recommended should be driven by aetiological/biomedical models.

    However, current literature relating to the aetiology and
    pathogenesis of CFS/ME is inconsistent and inconclusive whilst interventions recommended in the original guideline, such as CBT and GET, were described as the interventions for which there is the clearest evidence-base of benefit.

    This is supported by the recently published PACE trial (comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome among 641 patients,
    published February 2011).

    The review of literature undertaken to inform the review proposal also did not identify any research which would invalidate or change the direction of current guideline
    recommendations.’

    So, PACE did have an impact after all then and nothing biomedical could compare to the £5 million ‘invested’ in this study.

    I suppose we have to hope that before the next review, someone pulls a rabbit out of the hat then, and that someone does something good with the £1.5 million MRC pot of money.

  4. Why is the MEA incorrectly stating that the Guideline is for ME/CFS? It is CFS/ME. Please can this be changed.

    1. Yes why is that Tony? Come along now, tut tut tut 🙂

      While we are about it, why is anyone referring to anything OTHER than CFS/ME?

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