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  1. Esther12

    Merryn Crofts - media and inquest

    So sad. Best wishes to all her family and friends.
  2. Esther12

    Patients with Chronic Fatigue Syndrome needed for new study - Keele University UK

    Chew-Graham was one of the FINE researchers, and pretty much everything I've seen from her on CFS has been terrible. Here's Tuller's blog on FINE: http://www.virology.ws/2015/11/09/trial-by-error-continued-why-has-the-pace-studys-sister-trial-been-disappeared-and-forgotten/
  3. Esther12

    UK House of Lords/ House of Commons - relevant people and questions

    IF they did have figures, what are the chances that they'd have been presented in a misleading way anyway.
  4. Esther12

    MP Nicky Morgan to raise awareness of ME illness

    The more the merrier. Still seems weird that UK politicians are more willing to speak out about the problems with PACE than those employed in the UK to scrutinise research.... I know how broken UK science is, but I just can get my expectations low enough. [edit: Alternatively, maybe my...
  5. Esther12

    ME Association: ‘ME Awareness Week 2018’ New Early Day Motion Launched by Carol Monaghan MP

    I think that this is something that would be particularly worth contacting MPs about.
  6. Esther12

    AFME provide new self advocacy support material

    And I think that this fits in with Action for ME's seemingly thoughtless attitude of 'lets be positive and do something!'
  7. Esther12

    World ME Alliance, was previously IAFME: International Alliance for ME

    I hope that before any other patient groups join up with Action for ME on this, they will ask about what Action for ME is doing to ensure that the problems with the PACE trial are not just brushed under the carpet by the UK research establishment.
  8. Esther12

    UK: Labour Party are asking "What would you like to ask Theresa May?"

    I suspect that this is not the sort of question Corbyn would put to May. It would be very funny if he did though!
  9. Esther12

    BBC: Chronic fatigue syndrome treatment 'should be withdrawn'

    Isn't Paul McCrone a health economist, or something like that?
  10. Esther12

    The Canary: I was humbled by the ‘millions missing’ yesterday. Now it’s time for unrest.

    I think this was more cautiously phrased, and better for it, than some of the earlier Topper articles "actively promoted ME as a partly psychological, medically unexplained illness; the PACE trial is testament to this." I think it's usually best to avoid that whole 'psych vs bio' thing, but...
  11. Esther12

    BBC: Chronic fatigue syndrome treatment 'should be withdrawn'

    Not sure which thread is most appropriate for this, but the 'leading experts' letter was released: http://tillymoments.blogspot.co.uk/2018/05/bbc-should-check-their-information.html Chalder, Crawley, McCrone, Sharpe & Wessely, claiming there is "good evidence from multiple studies and...
  12. Esther12

    Millions Missing in Southampton - 12th May 2018

    Thanks for all your work @chicaguapa
  13. Esther12

    #MillionsMissing today, 12 May - post news, tweets, etc. here

    Thanks to all those who were involved in this. I've got a load of tabs open with things to catch up on over the next week!
  14. Esther12

    The Guardian: Now disabled people face a kind of internment. Just ask Edith

    A couple of follow-up letters on this, including one mentioning the harmful influence of the insurance industry: https://www.theguardian.com/society/2018/may/11/disabled-people-facing-government-hostility-in-the-uk
  15. Esther12

    My interview with The Canary re. song and #MilllionsMissing

    Heading for number one?! Great work Robert.
  16. Esther12

    To the #MillionsMissing...by Scott Ludlam (The Guardian - Australia)

    It's not listed anywhere on their front-page.
  17. Esther12

    Message from the Chair BACME on ME Awareness Month

    BACME chooses to link to Colin Barton's Sussex and Kent ME Association, Action for ME, and reMEmber. That's not a good hit-rate.
  18. Esther12

    Department of health quoting £3.5m investment in CFS/ME to look at new approaches to treatment - misleads public

    That does sound like a stretch. It would be interesting to see how they're justifying that claim.
  19. Esther12

    The Bristol Cable: #MillionsMissing: the campaign for ME equality

    The evidence around harms from CBT & GET is pretty weak so it's hard to say anything much with any real confidence.
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