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  1. Sasha

    Action for ME's administration and how that affects its views about treatment

    @large donner, I agree it would be interesting to know if there are big donors who hold a certain view on PACE etc. but that conflict of interest would pertain whether Clare (or anybody) had a salary or not. Even if they were all volunteers, they might fear withdrawal of that funding if they hit...
  2. Sasha

    Statements on conflict of interest of PACE trial TSC

    That could be easily determined by a literature search.
  3. Sasha

    Action for ME's administration and how that affects its views about treatment

    I can understand that, but it doesn't seem appropriate to me to ask a particular (and junior) member of staff about their own salary. I think the issue of charity overheads is also fraught - those with low overheads may not be running themselves properly. All fair points, though!
  4. Sasha

    Action for ME's administration and how that affects its views about treatment

    If I worked for a charity I wouldn't mind telling you whether it was a paid rather than voluntary position but I'd regard my salary as private information and I wouldn't tell you what it was. Why do you ask the question, @large donner? How does it relate to the topic of this thread?
  5. Sasha

    Sugar

    Bread made with sprouted grains, probably.
  6. Sasha

    Sugar

    I still wonder if its safe, though...
  7. Sasha

    Sugar

    I thought artificial sweeteners were also supposed to be bad for you (and your microbiome)?
  8. Sasha

    What is Action for ME's current (March 2018) position on the PACE trial?

    I agree, and my own comments are very much directed at AfME, not at you, Clare. But, thinking about the situation this afternoon, I worry about your personal position. I assume you're a good person trying to do the right thing. But right now, AfME's scientific incompetence is putting you in the...
  9. Sasha

    What is Action for ME's current (March 2018) position on the PACE trial?

    No offence to you, Londinium, but I would seriously hope that no such anecdotal data would be cited. We're now in the bizarre situation in which patients on this thread are trying to explain to a medical charity why anecdotal data cannot be trusted. I'm sorry, Clare @Action for M.E., but this...
  10. Sasha

    What is Action for ME's current (March 2018) position on the PACE trial?

    Calling @Jonathan Edwards's attention to this.
  11. Sasha

    What is Action for ME's current (March 2018) position on the PACE trial?

    Thank you for replying. Any meaningful debate about the methodology is long over, and the results of the trial have been more than 'called into question'. They have been debunked, to such an extent that any reasonable interpretation of the trial's results is that they show that CBT and GET do...
  12. Sasha

    CFS Research Center at Stanford Second Annual Community Symposium Sept. 29-2018

    Should be good! Can you add that to the calendar, @Kalliope? :)
  13. Sasha

    How to involve your MP in Carol Monaghan's PACE campaign + template email

    Thanks, Andy - I've added the Hansard link.
  14. Sasha

    How to involve your MP in Carol Monaghan's PACE campaign + template email

    Thanks, Andy. Do you mean a link to the Hansard account? Or the TV recording (if there is one - I can't remember)?
  15. Sasha

    PACE trial TSC and TMG minutes released

    I think that if you edit a new tag into an existing post, it doesn't work (I think someone told me that once). So, @Action for M.E. - please look at this post: https://www.s4me.info/threads/pace-trial-tsc-and-tmg-minutes-released.3150/page-11#post-57880
  16. Sasha

    Science for ME PACE Briefing document

    Here's my attempt: https://www.s4me.info/threads/how-to-involve-your-mp-in-carol-monaghans-pace-campaign.3248/#post-57899 I'd welcome feedback (on that thread) before people start sending it off.
  17. Sasha

    How to involve your MP in Carol Monaghan's PACE campaign + template email

    There was a call for a template letter on that other thread, so here's my attempt. Others should feel free to add theirs so that there's a bit of variety - but bear in mind that MPs are busy, so the shorter the better. Let's have a bit of discussion about whether I've got the template right...
  18. Sasha

    Science for ME PACE Briefing document

    I've started a fresh thread about this idea, which I think is very good. I will try to write something and add it to that thread.
  19. Sasha

    How to involve your MP in Carol Monaghan's PACE campaign + template email

    From @Joan Crawford, on the thread about the PACE briefing document: Great document. Good tone. I'll encourage Chester MESH members to write to their MPs and include this document. I got this tip off from Forward ME member: Carol Monaghan MP can be limited in what she can do/achieve for...
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