Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

IiME write to Prof Mark Baker of NICE: Battle lines are drawn

Discussion in 'General ME/CFS News' started by Countrygirl, Jan 16, 2018.

  1. Countrygirl

    Countrygirl Senior Member


    IiME have been in correspondence with Prof Baker over the past 48 hours.

    The first letter is from IiME to Prof Baker.

    The second is Prof Baker's totally unsatisfactory response.

    The third is IiME's reply

    There is heavy use of the word 'negligent' and the suggestion that each patient keeps a record of these letters on file so in the event of being harmed by the medical profession as they impose the suggestions of the NICE guidelines on us we can use it to sue.

    Abha, Revel, PatJ and 9 others like this.
  2. Jonathan Edwards

    Jonathan Edwards "Gibberish"

    'Therefore, I cannot accept at this stage that reports of flaws in one study invalidate the results of all the studies in this area.'

    Point 1: PACE invalidates the results of all the previous studies because it has brought to the attention of people who know something about trial design that all the other studies have been carried out with methodology so poor that they are meaningless.

    Point 2: Whereas previous studies may have given weak evidence for a positive effect of CBT and GET, as Kindlon (and others) has cogently pointed out, PACE actually gives strong evidence for no effect. Objective measures did not change. Recovery was minimal. Extended follow up at two and a half years showed NO BENEFIT AT ALL over the null comparator (not to be confused with a control).
  3. Deepwater

    Deepwater Senior Member

    Confirms my worst suspicions - that agreeing to a review was simply an attempt to take the steam out of the patient campaign and that it is not intended that anything substantial will change.

    Mark Baker writes: "Our recommendations were based on a body of research which preceded the PACE study."

    As if the public sector would have coughed up £5M for further research on a subject for which adequate evidence already existed! I'm actually pretty sure that the official reason given for doing the PACE trial was that there was a lack of empirical data for these existing treatments. The relevant quotation needs to be brought out in response, and Mark Baker also needs to be made to state explicitly what studies the 2007 GET/ CBT recommendations were based on.

    I'd be hopping mad if I could still hop without falling over.
    panckage, Solstice, Molly98 and 2 others like this.
  4. Countrygirl

    Countrygirl Senior Member

    Following the stakeholder meeting IiME have forwarded a strong(er) letter to Prof. Baker:

    17 January 2018

    Professor Mark Baker
    Centre for Guidelines Director
    National Institute for Health and Care Excellence

    NICE Guidelines for Myalgic Encephalomyelitis (ME)
    17 January 2018

    Dear Professor Baker,

    Thank you again for your reply to our letters.

    We apologise for taking up more of your time but there is one issue that has now arisen which we feel needs clarification and action.

    At the Stakeholder engagement workshop meeting yesterday you were reported as saying that the existing NICE guidelines would be “torn up” and new guidelines developed.

    Yet yesterday, just a few hours before that meeting, you wrote to us and stated –

    “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”

    and that you would

    “give some consideration to whether we need to modify or omit any of the existing recommendations during the development of the new guideline”

    These remarks seem to us to be contradictory.

    If you are now telling participants at yesterday’s meeting that the existing guidelines will be torn up then you are effectively stating that they are of no value.

    Therefore, there is no logic in retaining the existing guidelines any longer, which you have previously stated were not effective and which you are now alleged to have said will be completely removed in any case.

    If you decline to take action in issuing the addendum that we have requested then the most logical action that NICE must now take is to withdraw the existing guidelines completely, immediately, and inform all doctors across the UK that the existing guidelines are not fit for purpose and the recommendations in those guidelines are not to be used.

    This notice should also be communicated around the world to any foreign organisations that have misguidedly used the existing NICE guidelines for their own healthcare systems.

    It is better to have no guidelines than to have guidelines that will potentially harm patients.

    Although withdrawal of the guidelines may be embarrassing for NICE this action would avoid the need to add the addendum that we previously requested and would serve patients – the very people that the guidelines should help at the end of the day.

    This action could also demonstrate that your words mean more than the meaningless platitudes that patients in UK have long been accustomed to from establishment organisations over the last decades. You can change that – Tear It Up!

    Failure to withdraw these now would invite speculation that you are leading patients down one of the longest garden paths in history,

    Yours Sincerely,

    Kathleen McCall

    Chairman Invest in ME Research
    and the Trustees of Invest in ME Research

See more popular forum discussions.

Share This Page