Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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BBC Radio Suffolk Mark Murphy 15th August

Discussion in 'General ME/CFS News' started by TiredSam, Aug 15, 2017.

  1. TiredSam

    TiredSam The wise nematode hibernates

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  2. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    To avoid fascinating features on resuscitating goldfish I advise starting 27 min into the 3 hr programme ;)
     
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  3. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    Ends at 34 minutes. Not much here really just a small piece describing a severe 18 year old patient and a piece by MEA asking why NICE won't change its guidelines. There was no debate just statement from NICE at the end stating they don't see it necessary to change. I haven't gone further in to see if there were any phone in comments afterwards. The goldfish feature put me off to be honest.
     
  4. slysaint

    slysaint Senior Member

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    The piece from 18year old was rehashed repeat of a previous BBC radio program (can't remember which one). Mother sings the praises of AfME childrens division, MJW, SC, brief interview with Clare Ogden who gave the usual AfME line and saying they thought the guidelines should be reviewed. Another brief interview with someone with two family members with ME. All rather vague and could not really answer the presenters questions as to what needed to change.
    No mention of the 'treatment' that is offered/recommended by NHS/NICE or the problems with it.
    Would have been better to just read out the article in the Daily Mail.
     
  5. TiredSam

    TiredSam The wise nematode hibernates

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    I've only listened to the 27-34 minute segment, I thought it was good, also good for listeners to hear the cold, dismissive, totally inappropriate response from NICE.

    Continues at 1 hour 8 mins, haven't listened to that yet.
     
  6. TiredSam

    TiredSam The wise nematode hibernates

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    Just listened to 1 hour 8 minutes to 1 hour 17 minutes, I thought it was great, got the message out there very well. I don't mind if it was a repeat, they can repeat it every day until people LISTEN for all I care. Of course having spent so much time on PR the very mention of AfME induced a gag reflex, but they talked the talk very well too.

    A few cringeworthy moments of course, as there always are (e.g. Mark Murphy wouldn't stop saying "formerly known as yuppie flu" as if he had a duty to keep that thoroughly unpleasant label alive) but on the whole I'm glad it was broadcast and a number of good points were made (NICE need to stop ignoring research from abroad and get their act together, more ME sufferers than MS, graphic description of severe ME). NICE came across as aloof, patronising and unresponsive, which is just what they are.
     
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  7. trishrhymes

    trishrhymes Senior Member

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    I agree with @TiredSam . I thought for a couple of short items of a few minutes on a local radio station they did very well, conveying the seriousness, biological basis, need for change to NICE guidelines and proper consultant led medical services and to take notice of international evidence. Surprisingly good.
     
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  8. slysaint

    slysaint Senior Member

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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    Mistaken remark.
     

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