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August 21, 2020 IACFS/ME Virtual Conference

Discussion in 'General ME/CFS news' started by Tom Kindlon, Jun 16, 2020.

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  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Sep 16, 2020
    #41
    adambeyoncelowe, MEMarge and Kitty like this.
  2. Trish

    Trish Moderator Staff Member

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    Trish, Sep 16, 2020
    #42
    Hutan, adambeyoncelowe, NelliePledge and 3 others like this.
  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Sep 22, 2020
    #43
    Hutan, adambeyoncelowe, MEMarge and 3 others like this.
  4. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Oct 26, 2020
    #44
    Kitty, adambeyoncelowe, rvallee and 2 others like this.
  5. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    Tom Kindlon, Oct 28, 2020
    #45
    MEMarge, Kitty, andypants and 7 others like this.
  6. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Note also that they couldn't use government funds for a physical conference to pay for this conference, so it makes sense that they did this with a tighter budget.
     
    adambeyoncelowe, Oct 29, 2020
    #46
    MEMarge, Kitty and Dolphin like this.
  7. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    @Jonathan Edwards you were interested in this kind of study, right?

    I'm not convinced that making a decision to engage in pleasurable or meaningful activity is going to improve people's health. It could be that an improvement in health allows patients to engage in pleasurable or meaningful activities more than before.

    PS: but pleasurable or meaningful activities will improve quality of life.
     
    Last edited: Oct 29, 2020
    Hoopoe, Oct 29, 2020
    #47
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  8. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Was the paper in any way connected to the makers of the app? Seems odd that they flag only one in particular.
     
    adambeyoncelowe, Oct 29, 2020
    #48
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  9. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    And that app seems particularly odd.

    The institute that sells it says its 'mission' is:
    https://www.heartmath.org/about-us/hmi-mission/

    Their research:
    https://www.heartmath.org/research/featured-research/

    The scientific advisory board:
    https://www.heartmath.org/gci/team/advisory-boards/

    :confused:
     
    Last edited: Oct 29, 2020
    MSEsperanza, Oct 29, 2020
    #49
    Hutan, Michelle, MEMarge and 3 others like this.
  10. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    adambeyoncelowe, Oct 29, 2020
    #50
    Michelle, rvallee, MEMarge and 1 other person like this.
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    Obviously. I prefer people who respect the linear passage of time and causality. The mental gymnastics involved are spectacular.

    Most people are able to understand a similar scenario with head aches: 1) have head ache 2) don't do much as a result 3) take aspirin / painkiller 4) feel better and 5) be able to do things. It's not step 5 that lead to step 4. I mean come on you really have to work around basic features of reality to be confused by the sequence of events here. Just because we don't have the step 3 doesn't change that the sequence of events cannot fold back spacetime.
     
    rvallee, Oct 29, 2020
    #51
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  12. Hutan

    Hutan Moderator Staff Member

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    From the Vallings report.

    First, I can't politely say what I think about Violetta Renesca's well-meaning efforts to improve the self-efficacy of people with ME/CFS, other than, 'has she not heard of the placebo effect and its influence on subjective outcomes?'

    Second, it's a shame that clinicians experienced with ME/CFS like Vallings don't seem to understand, or be willing to call out, the poor science around these sort of treatments that inevitably end up blaming the person with ME/CFS.

    Third, why is IACFSME giving this sort of thing a platform?
     
    Last edited: Nov 4, 2020
    Hutan, Nov 4, 2020
    #52
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  13. Trish

    Trish Moderator Staff Member

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    Ugh. What on earth are IACFS thinking letting this sort of junk have a platform. Haven't they learned anything from the PACE fiasco. And this is in many ways worse - no control group, only 4 sessions over 4 weeks, questionnaire outcomes. Ridiculous.

    Is it worth sending in a complaint to the organisers?
     
    Trish, Nov 4, 2020
    #53
    Michelle, obeat, rvallee and 3 others like this.
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