The Call for Opposition: Challenging the P2P and IOM Processes
In our second article on how to react to the publication of the draft P2P report, Gabby Klein provides her view of why she and a large group of advocates and patients are continuing their protest of the government’s ongoing control and manipulation of our disease via their processes...
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Action for M.E. (2003). Membership survey ‘your experiences’ questionnaire

Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 24, 2013.

  1. Dolphin

    Dolphin Senior Member

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    I thought I would upload this survey. Peter White often quotes this small survey and I think it is useful for people to be familiar with it.

    Here's the main quantitative data on GET from the survey that I recall.

    [​IMG]
     

    Attached Files:

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  2. Dolphin

    Dolphin Senior Member

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    Example 1 of Peter White quoting this survey:

    In:



    (other references to harm in paper:



     
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  3. Dolphin

    Dolphin Senior Member

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    Example #2 of Peter White quoting this survey:

    In



     
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  4. Dolphin

    Dolphin Senior Member

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    Example #3 of Peter White quoting this survey:

    In:


     
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  5. Dolphin

    Dolphin Senior Member

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    Example #4 of Peter White quoting this survey:
    (see second paragraph)


     
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  6. Dolphin

    Dolphin Senior Member

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    Example #5 of Peter White quoting this survey:

    PD White didn't write this extract - this was written by ScotME:
     
  7. Dolphin

    Dolphin Senior Member

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    Example #6 of Peter White quoting this survey:

    In:

     
  8. Dolphin

    Dolphin Senior Member

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    Example #7 of Peter White quoting this survey:




     
  9. Dolphin

    Dolphin Senior Member

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    From Full NICE guidelines - I'm not sure who made this point at the moment:


     
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  10. Bob

    Bob

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    That's an interesting graph. Where did you get the graph from, Dolphin?
     
  11. Dolphin

    Dolphin Senior Member

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    See attachment in top post.
     
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  12. Simon

    Simon

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    1. Astonishing: you can't conclude anything at all from a sample of 42
    2. Comparing negative outcomes vs postivie/neutral, looking at the Behavioural Therapist results - presumably bona fide trained for such interventions - with gym gives a p value of 0.42, where p=0.05 is significant (Fisher's exact test)
    3. In any case, the best results came from using no professional (ranking from worst harm to least: OT = Gym < Physio < Therapist = GP < No Professional)
    4. So not only are the results statistically meaningless, the non-significant results indicate the results are worse with health professionals (Though amazingly the gym approach is bad too).
     
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  13. Bob

    Bob

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    Clearly AfME failed to refer to this graph when they wrote their published GET paper in which they heavily push the theory that any bad experiences in relation to GET are caused by badly trained therapists. Considering this data, I think their published GET paper undermines their members, and does us all a grave disservice. Instead of objectively assessing their own research results, they appear to have deferred to the psych-lobby, yet again. I'm really annoyed about this important omission from their research study. I wish I'd seen this data earlier. I didn't know it existed.

    AfME always seem completely out of their depth in terms of interpreting research, or research proposals. Either that or consciously in collusion.

    As Simon says, we can't tell much from this data, but it could have pointed them towards further research. Instead they've completely ignored it, and have almost concluded the opposite of what the data shows, but without any further evidence.
     
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