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Interview by South Africa's Pippa Hudson with Charles Shepherd and Retha Viviers

Discussion in 'General ME/CFS News' started by MeSci, Feb 11, 2018.

  1. MeSci

    MeSci Senior Member (Voting Rights)

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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    I'm all for optimism but felt CS painted a bit overly rosy picture of what's happening here.
    The article on Fibromyalgia that he mentions is now up on the MEA website:
    http://www.meassociation.org.uk/shop/medical-management-leaflets/what-is-fibromyalgia/
    but you have to pay to read it.

    eta: but it says "this Management File will appear in the latest edition of our quarterly ME Essential magazine" so any MEA members care to post it when its available(?)
     
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  3. Cinders66

    Cinders66 Senior Member (Voting Rights)

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    What planet is dr shepherd on here

    He doesn't mention pain in his description- not me, but for many its a huge symptom

    He talks as if our MRC is doing loads rather than continuing a tradition of virtual neglect - WTH

    He says uk is making great strides on diagnosing early. Uk isn't really making strides in anything AFAIC , although yes compared to 30 years ago we have shuffled to NICE guidelines and earlier diagnosis

    He says there lots of clinical trials going on - really ? Rituximab has flunked. What is there beyond valcyte and even that isn't getting large trials?

    He makes out there's lots can be done to help patients - basically same old activity management and sleep pain meds and says It's all Very hopeful

    As someone with long term severe ME I've long given up on the uk charities adopting the right tone and level of advocacy/activism for our illness and feel utterly unrepresented. I realise he's speaking to the whole South African community, some of whom are newly ill but the debilitation wasn't conveyed, the neeed for urgent action wasn't, nor was there imo a realistic picture that compared to other major illness we have just fragments of research going on, dire lack of funds and really only America is touching an adequate response.
     
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