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A proposal for ME Action: a commitment to evidence-based medicine

Discussion in 'General Advocacy Discussions' started by ME/CFS Skeptic, Oct 2, 2019.

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  1. Hutan

    Hutan Moderator Staff Member

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    Thanks Michiel, please add my name:
    <name now deleted for family privacy>
     
    Last edited: Oct 19, 2019
    Hutan, Oct 2, 2019
    #21
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  2. andypants

    andypants Senior Member (Voting Rights)

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    Great letter, Michiel.

    Please add my name as well.

    [removed name as it is already signed and doesn’t need to stay in the post]
     
    Last edited: Oct 14, 2019
    andypants, Oct 2, 2019
    #22
    Hutan, MSEsperanza, alktipping and 1 other person like this.
  3. Hutan

    Hutan Moderator Staff Member

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    Actually Michiel, so sorry to be a pain, but can I change that to
    I'm actually not an 'ME patient' as my doctor said that she'd just look after my non-ME health needs as she doesn't know anything about ME. And I'm not very patient.
     
    Last edited: Oct 19, 2019
    Hutan, Oct 2, 2019
    #23
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  4. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    No problem, hope it's ok now and that I haven't misunderstood.
     
    ME/CFS Skeptic, Oct 2, 2019
    #24
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  5. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    @Michiel Tack , I don’t think that it would be appropriate for me to sign since I am involved in other areas of the Values and Policies initiative, but it’s a good statement and I applaud you for creating it. I’m always happy when people treat new scientific hypotheses with skepticism and caution.
     
    Wilhelmina Jenkins, Oct 3, 2019
    #25
    Alton, MEMarge, Subtropical Island and 15 others like this.
  6. Daisybell

    Daisybell Senior Member (Voting Rights)

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    I would like to sign....thank you for the work on this. I think it looks very good.
    Daisybell, person with ME and moderator on the S4ME forum.
     
    Daisybell, Oct 3, 2019
    #26
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  7. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Ok thanks, Wilhelmina.
     
    ME/CFS Skeptic, Oct 3, 2019
    #27
    MEMarge and Wilhelmina Jenkins like this.
  8. hinterland

    hinterland Senior Member (Voting Rights)

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    Thanks. I think it's a noble sentiment, and I can't see anything wrong with the text of your letter. However, I'm cautious about holding up so called 'evidence based medicine' as beyond reproach. EBM, and what is judged to qualify as EBM, is what's been used by policy makers to oppress us over the last 30 or 40 years. That last sentence is probably straying into hyperbole, but I think expresses what may be a concern for some people. Who says what is and isn't EBM? Depending on how advanced the field is and where investment has been made the weight of evidence my be skewed against the interests of patients.

    But, of course all medicine should be based on the best available evidence.

    For a critique of EBM read this piece by Bruce Charlton.
    Zombie science of evidence-based medicine
     
    hinterland, Oct 3, 2019
    #28
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  9. Trish

    Trish Moderator Staff Member

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    I've just read it. It's a long rant that has a few ideas lost among the ranting. I think his main argument is that 'clinical epidemiology' which seems to mean doctors doing what they have observed to work, being replaced with clinical trials and meta analyses and NICE guidelines. He describes this as a cook book approach and thinks it's a bad thing.
     
    Last edited: Oct 3, 2019
    Trish, Oct 3, 2019
    #29
  10. NelliePledge

    NelliePledge Moderator Staff Member

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    Aren’t we just saying we want to be clear that the statement definitely does not mean that we think the organisation should support the current flavour of the month known as Evidence Based Medicine or EBM. We simply think it should support basing medical practice on sound evidence. Can’t that be put in a covering email?
     
    Last edited: Oct 3, 2019
    NelliePledge, Oct 3, 2019
    #30
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  11. Trish

    Trish Moderator Staff Member

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    I'm still not clear what the problem is with EBM. Surely it's better for doctors to base their practice on scientific evidence, including that from double blind controlled trials, rather than on what they've always done or what they were taught at medical school, or what they've tried out on a few patients and seemed to work.

    How else do we replace 'stomach ulcers are a sign of stress, treat with therapy' with 'ulcers are caused by H pylori infection, treat with antibiotics'.

    Edit: Apologies, I misunderstood. Should have read the following sentence more carefully.
     
    Last edited: Oct 3, 2019
    Trish, Oct 3, 2019
    #31
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  12. NelliePledge

    NelliePledge Moderator Staff Member

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    That’s what I said in the second sentence @Trish. It’s not about the EBM label it’s about actually having sound evidence. Maybe I’m dancing on a pin head but the BPS folks are no doubt all claiming they’re doing EBM.
     
    NelliePledge, Oct 3, 2019
    #32
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  13. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think it is a fair point that there is a problem with EBM in capitals, not with evidence based medicine.

    There is certainly a problem that people who make a living out of extolling EBM, like Paul Glazsiou, are not helpful to a reliable evidence base - quite the opposite.
     
    Jonathan Edwards, Oct 3, 2019
    #33
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  14. Ravn

    Ravn Senior Member (Voting Rights)

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    Happy to put my name to this @Michiel Tack.
    Bea Ravn, PwME, active when able on S4ME and in M.E. Awareness NZ.
     
    Ravn, Oct 4, 2019
    #34
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  15. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Thank you Ravn, also for your help in drafting the letter. Will add you to the list.
     
    ME/CFS Skeptic, Oct 4, 2019
    #35
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  16. Griffin

    Griffin Established Member

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    I wonder if the fact that ME Action is a US organisation (with international outposts) means that EBM is missing is more of an issue in the UK with the BPS brigade than it is in the US? Not a reason to ignore it, just perhaps an explanation why it got missed.

    My pet peeve is that virtually all clinical trials in ME are very small and don't tell us any more than it is worth doing a bigger trial, and yet this is always reported by the media as amazing news and then taken up by the community, not surprisingly, as proving facts. I don't mean to underrate the progress and value from small trials as indicative, but that the reporting in the media is an issue.
     
    Griffin, Oct 4, 2019
    #36
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  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I think it may be the way around. All advocacy groups are pretty much agreed that treatments like CBT and GET are not based on good evidence. The need to emphasise evidence quality is because ‘biomedical’ (drugs or surgery) treatments based on just as weak evidence are not similarly being called out. If anything that would seem to be a bigger problem in the US.
     
    Jonathan Edwards, Oct 4, 2019
    #37
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  18. Anna H

    Anna H Senior Member (Voting Rights)

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    Thank you @Michiel Tack!

    You can add my name as well:
    Lotta Hahn, ME-patient since 2012
     
    Anna H, Oct 5, 2019
    #38
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  19. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Please add me, too, @Michiel Tack:

    MSEsperanza, ill with ME since 1998, officially diagnosed with "CFS" in 2005, S4ME forum member since 2017.
     
    MSEsperanza, Oct 5, 2019
    #39
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  20. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    ME/CFS Skeptic, Oct 5, 2019
    #40
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