August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Counter petition to the MEGA petition, brainstorming stage

Discussion in 'Petitions' started by AndyPR, Sep 29, 2016.

  1. Esther12

    Esther12 Senior Member

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    Sean Lynch did that really poorly thought through defense of PACE (seemingly promoting even worse trial for the future) in a BMJ RR a while back. His involvement does make me think there will be reasons for concern there.
     
    Countrygirl, Hutan, TiredSam and 2 others like this.
  2. BurnA

    BurnA Senior Member

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    When I hear this I cant help wondering if the whole MEGA study is seriously at risk - will the results even be interpretable if the diagnostic criteria end up being even slightly mixed.

    Why jeprodise the entire study and all that money ? Better to have a smaller study, if needs be, if it can be guaranteed to be robust.


    To know that the NHS clinics are not the best refferral source but to continue to use them in a study this important seems strange.
    I know people do want this study done but there is really no point if the results might be meaningless.
     
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  3. Countrygirl

    Countrygirl Senior Member

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    Thank you for posting this information about the Devon clinics. However, it doesn't change the fact that local doctors, both GPs and hospital doctors, do not accept that ME exists as a genuine physical illness. A few do, hopefully an increasing number of them, but they say that they cannot share their opinion with their colleagues for fear of being ridiculed.

    I think it would be useful if the team from the clinic held an education event at the post-graduate centre to at least inform their colleagues that ME is a genuine physical illness and that patients should not be dismissed as they so often are at present. So far, the message is not getting through to the majority who are entrenched in their views.
     
    Daisymay, Jan, TiredSam and 1 other person like this.
  4. Countrygirl

    Countrygirl Senior Member

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    :thumbsup:

    Fortunately, he has now left.
     
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  5. Countrygirl

    Countrygirl Senior Member

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    I'm sorry this is taking the thread slightly off-topic and I do hesitate in posting it, but further to the posts above which reference the treatment of patients with an ME diagnosis in Devon, this was written today following an appointment at one of the two main hospitals yesterday. It is to be put on the hospital's FB page. It is too emotional, I suspect, to be taken seriously, but the patient has cause to be distressed. To be clear, this patient believes she has Lyme disease, but the problems seem so similar and the medical profession's attitude towards the condition appears to be identical and therefore I believe it is relevant.

    ................... a little post-grad medical training wouldn't go amiss.

    Now back on topic................................
     
    Last edited: Oct 7, 2016

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