The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Jul 10, 2017.

  1. Countrygirl

    Countrygirl ME is not MUS

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    https://sapc.ac.uk/conference/2017/...treatments-mecfs-symptoms-analysis-of-patient



     
  2. Countrygirl

    Countrygirl ME is not MUS

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    TiredSam likes this.
  3. charles shepherd

    charles shepherd Senior Member

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    This presentation to a conference at the University of Warwick refers to the largest ever survey of patient evidence relating to acceptability, efficacy and safety of CBT, GET and Pacing

    Executive summary here:

    http://www.meassociation.org.uk/2015/05/23959/

    The MEA has also been working with Keith on the preparation of academic papers covering the results of this report

    We will be including these findings in our submission to NICE

    CS
     
  4. charles shepherd

    charles shepherd Senior Member

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    8376 signatures right now - looks as though we should reach 9,000 by the end of today!

    CS
     
  5. Countrygirl

    Countrygirl ME is not MUS

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    :balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons: 8 500!! :balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons:
     
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  6. slysaint

    slysaint Senior Member

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    In the surveillance review proposal it says:
    "If the PACE trial evidence was downgraded or set aside in a new systematic review, other evidence from RCTs and systematic reviews shows benefit of CBT and GET in line with current recommendations".

    3 things:
    1) Would these have got off the ground let alone been published/passed peer review if it had not been for PACE?
    2) What was the average/mean figure(%) of those who supposedly 'benefited' from CBT/GET from these other RCTs?
    3) Did any of these other RCTs use any actual performance/biomedical measurements or were they all reliant on subjective questionnaires (eg CFQ designed for PACE).
     
  7. Valentijn

    Valentijn Activity Level: 3

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    Some did. But they all used Oxford criteria, and the data suggested that few patients, if any, suffered from any physical disability. Eg, CPET scores were already normal or low-normal at the start.
     
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  8. Sean

    Sean Senior Member

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    Not to mention that PACE was justified by saying the existing evidence base was inadequate.
     
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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    8753 now.
     
  10. TiredSam

    TiredSam The wise nematode hibernates

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    The IOM report and all those who contributed to it can quite safely be dismissed then.
     
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  11. TiredSam

    TiredSam The wise nematode hibernates

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    I don't see why not, they're quite happy to rely on papers written by bacteria.
     
  12. charles shepherd

    charles shepherd Senior Member

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    I have now informed Board members on the CMRC that the MEA has created a petition calling on NICE to basically overrule the recommendation of their expert group that has been reviewing all the evidence (which appears to be reviewing abstracts rather than actual papers) and to move forward with a proper and comprehensive review of the NICE guideline on ME/CFS

    I have also informed the CMRC that the MEA petition has gathered more than 8800 signatures in less than four days - so I do not think this demonstation of patient dissatisfaction can be ignored by NICE

    The CMRC has NOT been involved with the NICE guideline review, nor the guideline development process, and is NOT a stakeholder in the consultation process. Neither is the MRC.

    However, there are members of the CMRC Board who have input into various stakeholder groups - so I feel it is important for them to be aware of the position being taken by the MEA

    Interesting to note some of the names on the NICE stakeholder list:

    British Medical Journal
    Cochrane centre for depresion, anxiety and neurosis
    Eli Lilly (drug company)
    Ministry of Defence
    Royal College of Psychiatrists

    Full list of ME/CFS stakeholders in the ME/CFS guideline here:
    https://www.nice.org.uk/guidance/cg53/documents/stakeholder-list-2

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
  13. Countrygirl

    Countrygirl ME is not MUS

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    Well, @TiredSam ! ......they are .......foreign..............:wide-eyed:.......................as in................not English :vomit:..............you can't expect NICE to take notice of...............foreign.............research..............let alone ......foreign......opinion. :aghhh:
     
  14. dangermouse

    dangermouse Senior Member

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    Ahem, so I'm not surprised. They are like a dog with a bone.
     
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  15. Countrygirl

    Countrygirl ME is not MUS

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    Ministry of Defence????

    Why?

    Are they worried that the so-called harmless bacteria they sprayed us with during in the 60s and 70s wasn't perhaps as harmless as they thought?
     
  16. TiredSam

    TiredSam The wise nematode hibernates

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    That explains why they've buried M.E. Now if only they'd forget where they've put it and scamper off to do something else. Can't someone throw them a stick or something?
     
  17. SamanthaJ

    SamanthaJ Senior Member

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    I'm curious whether the BMJ is a stakeholder for other conditions. It seems a bit weird to me.
     
  18. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Gulf war syndrome etc?.....or maybe we are genetically engineered soldiers that didn't work out?
     
  19. Countrygirl

    Countrygirl ME is not MUS

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    8 904..................8 919!!.................
     
  20. Large Donner

    Large Donner Senior Member

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    Ah well I feel really confident now, they have got good and honest scientists, they will get to the bottom of this. :cool:
     

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