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  1. Docsimsim
    Post

    Action for ME GP webinars

    Maybe it’s because they are a generic/vague fatigue organisation rather than a specificallyM.E. one? Chronic fatigue is a dust bin diagnosis...
    Post by: Docsimsim, Jul 16, 2018 in forum: General ME/CFS news
  2. Docsimsim
    Post

    Action for ME GP webinars

    They’re not interested in dialogue with patients unless it fits their agenda. Any of us who don’t sing from their pro BPS hymn sheet are summarily...
    Post by: Docsimsim, Jul 15, 2018 in forum: General ME/CFS news
  3. Docsimsim
    Post

    Action for ME GP webinars

    I don’t want my GP to be educated on ME by Afme. It’s like asking Nigel Farage to educate MPs about the EU! I have severe progressive ME and it’s...
    Post by: Docsimsim, Jul 14, 2018 in forum: General ME/CFS news
  4. Docsimsim
    Post

    Action for ME has joined S4ME

    @Jonathan Edwards. Oh I didn’t know that afme had stopped supporting the ME biobank project. It was their one single positive act in their 30...
    Post by: Docsimsim, Mar 26, 2018 in forum: General ME/CFS news
  5. Docsimsim
    Post

    Action for ME has joined S4ME

    It’s still the case. They have never even criticised SMILE and LP. Do they still advertise LP in their mag?!
    Post by: Docsimsim, Mar 26, 2018 in forum: General ME/CFS news
  6. Docsimsim
    Post

    Action for ME has joined S4ME

    It’s not old news, they continue to refuse to even criticise SMILE let alone anything more. MEA and Charles Shepherd did so clearly on radio 4...
    Post by: Docsimsim, Mar 26, 2018 in forum: General ME/CFS news
  7. Docsimsim
    Post

    Action for ME has joined S4ME

    @TiredSam, Unfortunately ‘Within the S4ME rules’ caveat can also be used to turn the heat down/off on Afme. Personally I think it makes no...
    Post by: Docsimsim, Mar 24, 2018 in forum: General ME/CFS news
  8. Docsimsim
    Post

    Action for ME has joined S4ME

    I think you’re being admirably optimistic if you think that Afme will actually reply beyond the usual fudging of this issue. There is no will on...
    Post by: Docsimsim, Mar 24, 2018 in forum: General ME/CFS news
  9. Docsimsim
    Post

    Action for ME has joined S4ME

    Patients are regularly blocked from your social media for totally innocuous remarks. The common factor seems to be anyone questioning your decades...
    Post by: Docsimsim, Mar 24, 2018 in forum: General ME/CFS news
  10. Docsimsim
    Post

    Action for ME has joined S4ME

    Totally agree. More fudging and none answers. This has been Afme’s MO for decades.
    Post by: Docsimsim, Mar 24, 2018 in forum: General ME/CFS news
  11. Docsimsim
    Post

    Action for ME has joined S4ME

    I think it’s very important to make sure this forum doesn’t just become another platform for an organisation as powerful as Afme to spread more...
    Post by: Docsimsim, Mar 24, 2018 in forum: General ME/CFS news
  12. Docsimsim
    Post

    Action for ME has joined S4ME

    Yeah I thought so, which makes the continuing MEA CULPA meaningless
    Post by: Docsimsim, Mar 17, 2018 in forum: General ME/CFS news
  13. Docsimsim
    Post

    Action for ME has joined S4ME

    Precisely. MUS label illness: don’t do any more costly investigations and fob them off with CBT/GET
    Post by: Docsimsim, Mar 17, 2018 in forum: General ME/CFS news
  14. Docsimsim
    Post

    Action for ME has joined S4ME

    Wish I could share your optimism. Also not quite sure the situations are analogous? Russia had 30m people as cannon fodder to beat hitler. A group...
    Post by: Docsimsim, Mar 17, 2018 in forum: General ME/CFS news
  15. Docsimsim
    Post

    Action for ME has joined S4ME

    @lisette, the issue of the ‘possible’ continued support of prof Crawley by Afme was raised on FB last year. That’s when the CEO made a post...
    Post by: Docsimsim, Mar 17, 2018 in forum: General ME/CFS news
  16. Docsimsim
    Post

    Action for ME has joined S4ME

    Oh, there was me thinking that afme joined this thread under their own volition rather than being prompted. Tx for your effort for directly...
    Post by: Docsimsim, Mar 17, 2018 in forum: General ME/CFS news
  17. Docsimsim
    Post

    Action for ME has joined S4ME

    Precisely. It is very convenient for an organisation to hide behind the ‘rule’ book & use it as a means to silence legitimate concerns by those it...
    Post by: Docsimsim, Mar 17, 2018 in forum: General ME/CFS news
  18. Docsimsim
    Post

    Action for ME has joined S4ME

    Yes that’s one of the possibilities Lucy. It was around the time that Crawley was doing her media blitz (with the backing of SMC) on SMILE &...
    Post by: Docsimsim, Mar 16, 2018 in forum: General ME/CFS news
  19. Docsimsim
    Post

    Action for ME has joined S4ME

    Hi Clare. Someone here mentioned it might have been on the AYME page. I try and see if I can look for it at some point, as i have seriously...
    Post by: Docsimsim, Mar 16, 2018 in forum: General ME/CFS news
  20. Docsimsim
    Post

    Action for ME has joined S4ME

    I think those of us who are banned from their page don’t have access to this search option?
    Post by: Docsimsim, Mar 16, 2018 in forum: General ME/CFS news
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