ME item on BBC Radio Lincolnshire

Discussion in 'General ME/CFS news' started by Skycloud, Mar 7, 2018.

  1. Skycloud

    Skycloud Senior Member (Voting Rights)

  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Just listened to it.
    It was OK.........but........sorry to be negative but hopefully constructively.
    Whilst I appreciate CS continuing efforts, I wish he would update some of his standard answers.
    An example being that he could tell the questioner (whoever they are) that recent research has shown that ME patients have a problem with energy production in the body (or words to that effect). This would hopefully begin to change the narrative rather than just saying 'its a physical illness'.
    Valentijn, Forestvon, Jan and 6 others like this.
  3. Esther12

    Esther12 Senior Member (Voting Rights)

    I've not listened to this show yet, but generally I think it's best to be cautious with the claims made about any research that is still uncertain. It's not like we have a diagnostic test for ME that can identify patients via their problems with energy production. If exaggerated claims are made about tentative research that ends up not leading to anything then this can set us back.
  4. Forestvon

    Forestvon Senior Member (Voting Rights)

    Thanks to both in interview for hard work.
    Two suggestions for future, I think it wd be helpful to mention each time, to help uninitiated understand our apparent 'unreliability':
    1. Post exertional exacerbation of symptoms, the way it hits you next day or later
    2. the need to pace self through out day like recharging a very low battery
    MeSci, MEMarge and Skycloud like this.

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