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  1. Esther12

    News from Scandinavia

    Thanks for the update. Always a relief when something like this turns out to be good. In case any of those involved read this: thanks to you too!
  2. Esther12

    Interview with Howard Bloom Where He Talks Extensively About Severe ME Viewed Over 500000 Times in 1st Day

    Comments underneath seem sceptical of some of the claims he made.... did he say he was doing 700 press ups each morning? That's a little more than just 'amazing'.
  3. Esther12

    The ME Show

    Thanks for working on this. Marking to come back to listen to when I've got a bit more time.
  4. Esther12

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

    When MPs say that they don't sign EDMs maybe it would be worth people emphasising that this is an unusual case, where a section of the UK state that politicians tend to just defer to (medical research) has made serious mistakes, and now appears to be trying to avoid acknowledging their failings...
  5. Esther12

    New German guideline for ME published today

    Even to really ill-informed patients, surely this looks terrible? I guess a lot of people are just too caught up in their own lives and ill-health to care?
  6. Esther12

    A general thread on the PACE trial!

    Just saw this reply from the Department for Business, Energy & Industrial Strategy to @Paul Watton linked to on social media, which includes bits on PACE: https://app.box.com/s/wr8rzkaeulprkki2y213yinmqtpoh0vu eg: I'm sure I saw an earlier part of this correspondance elsewhere. @Paul Watton -...
  7. Esther12

    PACE trial manuals no longer accessible

    It looks like the therapist and participant guides are up, but those couple of additional things are not.
  8. Esther12

    PACE trial manuals no longer accessible

    Looks like these are still unavailable:
  9. Esther12

    UK’s powerful funding body takes shape

    Wessely was pleased about Walport's appointment: http://www.sciencemediacentre.org/expert-reaction-to-prof-sir-mark-walport-being-appointed-as-chief-executive-of-ukri/ Blakemore praises his 'political acumen'...
  10. Esther12

    UK’s powerful funding body takes shape

    Mark Walport was director of the Wellcome Trust when the Science Media Centre were doing their most to spin results from PACE and stigmatise the patients pointing out problems with it. He was also a part of the appalling coverage on Radio 4 that the Science Media Centre engineered...
  11. Esther12

    FOI request to QMUL on how they decided it would take too long to release information on the PACE trial

    Only just seen this (I google less frequently than I used to): https://www.whatdotheyknow.com/request/cfs_the_volume_of_objective_data#outgoing-766327 Only interesting for how little info they provide. It seems that all that is needed for QMUL to decide that they should not release data...
  12. Esther12

    United Kingdom: ME Research UK (MERUK) News

    I remember thinking that LP piece was very weak when I read it too, and especially in comparison to Tuller's examination of it from December: http://www.virology.ws/2017/12/13/trial-by-error-the-smile-trials-undisclosed-outcomes/
  13. Esther12

    Merryn Crofts - media and inquest

    I don't know, but could it be that it's just mentioned on some certificates?
  14. Esther12

    Merryn Crofts - media and inquest

    Could be suicides?
  15. Esther12

    PACE trial manuals no longer accessible

    Oops - I thought they'd all been uploaded to MEpedia. After the one woolie posted, looks like these are the only two missing now.
  16. Esther12

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    I'm fearful of anyone who is not already a clear outsider.
  17. Esther12

    The Canary: An ex-professional ballet dancer is using his art for the ‘millions missing’

    Steve Topple at the Canary has done a load of Millions Missing stories now. Thanks to him. This is what wikipedia says about readership there: During July 2016, The Canary achieved over 7.5 million page views, ranking 97th in readership among British media organisations, slightly higher than...
  18. Esther12

    Merryn Crofts - media and inquest

    So sad. Best wishes to all her family and friends.
  19. 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/
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