Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Link to full article to BMJ's Best Practice for ME

Discussion in 'General ME/CFS News' started by Countrygirl, Oct 29, 2017.

  1. Countrygirl

    Countrygirl Senior Member

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    UK
  2. NelliePledge

    NelliePledge plodder

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    Thanks.

    It is quite a mixed bag some good stuff about PEM and where it highlights research finding and issues with criteria. But page 53 under recommendations - patients should be instructed about de conditioning and about using "low intensity" exercise like walking, swimming (etc) doesn't say as in NICE anything about use of heart rate monitoring. Taken on its own - and presumably some GPs will jump to this page without reviewing the whole thing - unhelpful and potentially dangerous. I know they can't go against NICE as such but at least needs to mention HRM and link/ refer to PEM explicitly here.
     
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  3. A.B.

    A.B. Senior Member

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    I like it but the treatment part is clearly still heavily influenced by BPS views: contradictory advice on exertion, a soft recommendation for GET, lots of emphasis on antidepressants.
     
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  4. MEMum

    MEMum Senior Member

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    I like a lot of it.
    I agree with above comments.
    In addition there appears to be minimal understanding of why people with ME have had strong difference in opinions with the "medical specialists". There is no mention of the CBT that was recommended as per PACE was to change patients false illness beliefs and GET to combat their fear of exercise! (p37)
    Has anyone got any idea how we can respond to these errors/omissions?

    If this Best Practice document was last updated 31 July 2017, did NICE not know that it was being worked on when they were prevaricating about review of their guidelines?
    Presumably the doctors in CMRC will get this update...
     
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  5. MEMum

    MEMum Senior Member

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    In addition they still keep referring to rehab!
    Does anyone know what "body awareness therapy" is? p40
     
  6. sue la-la

    sue la-la

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    i'm perplexed by "Pathophysiology" on page 6 - which includes an extended discussion of theoretical "Excessive or burned out stress responses" and "Rape-induced paralysis or immobility when under fire in battle".

    since when did random speculation have a place in an evidence-based clinical guideline ?
     
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  7. Learner1

    Learner1 Professional Patient

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    Much of this was very good. However, the diagnostic testing and treatment sections were disappointing.

    Though it discussed the metabolomic studies, amino acid depletion, and IBS, there was no mention of testing for nutrient deficiencies beyond ferritin and no mention of stool tests, and certainly nothing about treating any problems found (pre and probiotics, B12, folate, glutathione, lipid replenishment, CoQ10, electrolytes, etc.)

    Though it mentioned viral infections and hypogammaglobulinemia in several places, it didn't recommend adequate testing. And it downplayed the effects of antivirals and immunoglobulin treatment.

    Though it mentioned MCAS, it didn't provide guidance in how to manage it.

    Certainly, when exercise and cognitive therapy are still covered in so much detail, some due diligence to these topics, and the inclusion of immunologists, infectious disease specialists, nutritionists, etc. should be attended to.
     
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