BACME Meeting 14-15 March

Discussion in 'General ME/CFS news' started by Jonathan Edwards, Mar 16, 2018.

  1. Skycloud

    Skycloud Senior Member (Voting Rights)

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    Whoever wrote that should have it tattooed on their forehead.
     
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  2. Amw66

    Amw66 Senior Member (Voting Rights)

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    Preferably back to front so that
    they can read it when they look in the mirror
    having other people try and read it the wrong way round will make them feel " under scrutiny"
     
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  3. NelliePledge

    NelliePledge Moderator Staff Member

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    @Indigophoton spotted your edit - accelerometer seemed like a very apt typo for GET
     
  4. Barry

    Barry Senior Member (Voting Rights)

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    I didn't know someone had done a different PACE trial ... :rolleyes::).
     
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  5. Barry

    Barry Senior Member (Voting Rights)

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    That actually seems to sum up much of the BSP-inclined 'research'. I suspect that if data could ever be fully released, there might have been much swept under the carpet about those who deteriorated, especially perhaps dismissing as due to other causes rather than accepting any possibility the interventions themselves might be an influence.
     
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  6. anniekim

    anniekim Senior Member (Voting Rights)

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    *Do you mean it's invitation only*

    I presume they choose who to invite as speakers such as Per Fink.

    One of the members is a physiotherapist who was either on the Fine trial or Pace, apologies can’t remember which. She has a private practise touting CBT and GET for pwme citing they are evidence based treatments. BACME are a bps group and I just don’t see them wishing to promote heavily bio medical research. It would go against their interests.

    Edit:

    I found the name of the physiotherapist, it’s Jessica Bavinton, and she was involved in the PACE trial. The great resource ME-pedia give details about her http://me-pedia.org/wiki/Jessica_Bavinton
     
    Last edited: Mar 17, 2018
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  7. Sasha

    Sasha Senior Member (Voting Rights)

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    They might not, though. For most conferences, there's a call for papers and anyone can submit something. A committee peer-reviews the submissions and chooses which to accept. Also, certain people are chosen to speak in particular slots, such as the after-banquet speech, the keynote speech, the Fred Bloggs memorial speech, and so on.

    There may be room for manoeuvre, in terms of anti-BPS speakers getting in. Especially if BACME are now feeling the winds of change and realising the extent of their ignorance.
     
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  8. Indigophoton

    Indigophoton Senior Member (Voting Rights)

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    I must've been going to the wrong conferences :facepalm:
     
  9. NelliePledge

    NelliePledge Moderator Staff Member

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    I’ve seen a quite few perplexed posts on Facebook from (mainly U.K.) people going through tough times saying comments along the lines of I was told I wouldn’t get worse but I have got worse
     
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  10. Barry

    Barry Senior Member (Voting Rights)

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    Maybe they think people who fail to improve are not trying hard enough? :rolleyes:
     
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  11. anniekim

    anniekim Senior Member (Voting Rights)

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    Thanks @Sasha for explaining how conferences work. Will the committee reviewing the submissions be members of BACME so they can cherry pick to an extent but would explain why the odd bio medical speaker gets through.
     
  12. Sasha

    Sasha Senior Member (Voting Rights)

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    Probably BACME members or people within their network whom they can call on to review a paper that's outside their collective area of expertise.
    They probably naturally only received submissions (if it's by submission) from within their network of people who think like themselves, and probably only think to invite from within that network. But if they're approached by outsiders, they wouldn't necessarily be hostile to the idea of getting a wider range of input.
     
  13. James

    James Established Member (Voting Rights)

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    Report improvement on a questionnaire and it will be believed :thumbup: report deterioration on the same questionnaire and BACME have treatment for those "irrational illness beliefs" :banghead:

    ps my actometer is running in the 4.30 at Kempton :trophy@
     
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  14. Revel

    Revel Senior Member (Voting Rights)

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    Thanks for the tip, @James, worth a punt? Wonder what the S4ME racing syndicate's horse should be called? :emoji_horse:
     
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  15. James

    James Established Member (Voting Rights)

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    Can I propose Objective Evidence as a name
     
  16. Mithriel

    Mithriel Senior Member (Voting Rights)

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    Just read this, I find it hard to believe that the elderly would have a response to CPET testing like ME with serious deterioration on the second day. This testing is used for people with heart and lung diseases so older individuals must get them all the time. A single test is believed to give a reading that tells something about the patient's state of health. When they were devised surely they had to find out if it was reliable and replicable. if it doesn't it is useless so why would it be introduced?
     
  17. Woolie

    Woolie Senior Member

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    Haha, not surprising. I'd cheat too if my home life was being threatened by my doctor.
     
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  18. Woolie

    Woolie Senior Member

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    :rofl::rofl::rofl:!! Some fantastic imagery there!

    Go rover, go!
     
  19. Inara

    Inara Senior Member (Voting Rights)

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    Well, he did get BDD into ICD-11.

    Edit: This should be taken seriously. If Fink is a lonely speaker he is a powerful influencer. Not to underestimate.
     
    Last edited: Aug 5, 2018
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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    This needs clarifying; Per Finks 'baby' is BDS, this is supposedly NOT the same as what has been put into the ICD-11.
    https://www.s4me.info/threads/updat...nd-terminology-systems.3912/page-4#post-87393

    "Fink has also clarified in paper [1] and presentation [2] that the BDD disorder construct/criteria for the ICD-11 core edition (for which an advance pre-release version was published on June 18) is not his BDS construct/criteria."

    one to watch, as he (Per Fink) might continue to falsely make out that his is in the ICD-11
     

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