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Consulting patients in setting priorities in M.E. research: findings from a national on-line survey

Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 28, 2015.

  1. Dolphin

    Dolphin Senior Member

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    Free full text: http://www.researchinvolvement.com/content/1/1/11

     
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  2. Dolphin

    Dolphin Senior Member

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  3. Dolphin

    Dolphin Senior Member

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    A sample contribution given in the paper:
     
    Last edited: Sep 28, 2015
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  4. Dolphin

    Dolphin Senior Member

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    These figures don't add up i.e. 90.4% of 1144 is not 822.
    The first draft online talks about 915 participants. The figures suggest 909/910. People could tick more than one box which is why summing up all the categories could give more than 909/910/915.

    Adding the figures at: http://www.actionforme.org.uk/Resou...search/research-priorities-survey-results.pdf I got 904 1st choices, 893 2nd choices and 898 3rd choices.
     
    Last edited: Sep 28, 2015
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  5. Dolphin

    Dolphin Senior Member

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    It's interesting to compare this with the MRC research strategy 2003. I can't remember the exact details but it basically concluded that funding the pathophysiology and aetiology wasn't necessary, you could have treatments without knowing the underlying cause for a condition. This was clearer in the draft research strategy that had been released a few months before. By the time of the final version, they changed the wording of the bits but not the general direction (they held a consultation but seemed to largely ignore the results except to make cosmetic changes).

    Two weeks after the research strategy was published, it was announced that the FINE and PACE Trials would be funded. It wouldn't be till 2011 that the MRC would fund biomedical research.

    It seems quite likely the strategy was written the way it was to justify the MRC's funding of the FINE Trial and PACE Trial.
     
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  6. Bob

    Bob

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    England (south coast)
    I agree with the top research priorities identified by the survey...

    1. Disease processes (to achieve a better understanding of the underlying pathology of ME).
    2. More effective treatments.
    3. Faster and more accurate diagnosis.
    4. Clinical course of ME; outcomes and prognosis.
    5. Severely affected patients.
     
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  7. Esther12

    Esther12 Senior Member

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    That whole approach has left me not wanting research into treatments... I fear it!
     
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  8. Dolphin

    Dolphin Senior Member

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    Yes, I think I didn't vote for treatments in this survey for that reason.

    I also would feel more comfortable trying a treatment if it has some logical basis.
     
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