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  1. MSEsperanza

    Michael Sharpe skewered by @JohntheJack on Twitter

    interesting wording by SW -- he's "pretty sure", then "checked back with MS" who "thinks"...
  2. MSEsperanza

    Michael Sharpe skewered by @JohntheJack on Twitter

    Thank you, @Carolyn Wilshire. It's more precise to say:" anybody who is denying an actually existing, pathological fear of exercise" - At least I think that this is what the BPS approach implies. (Have edited my post accordingly) What do you think?
  3. MSEsperanza

    Michael Sharpe skewered by @JohntheJack on Twitter

    Some preliminary thoughts about how to categorize the PACE trial in scientific terminology -- and why this could be important. I thought that the ME patient community and their advocates pointed to some contradictory and unlogical elements already in the underlying assumptions of the previous...
  4. MSEsperanza

    Michael Sharpe skewered by @JohntheJack on Twitter

    Hm, is it possible to falsify a [edit: theoretical] model which is inconsistent and contradictory in itself [edit: by running a trial based on this already flawed model]?
  5. MSEsperanza

    Michael Sharpe skewered by @JohntheJack on Twitter

    My feeling uncomfortable with "Black Triangle" naming themselves "Black Triangle" does not include a critque of their general agenda and advocacy. Apologies for not having added this in my comment.
  6. MSEsperanza

    Michael Sharpe skewered by @JohntheJack on Twitter

    To all who joined the discussions on twitter and on S4ME since Simon Wessely got Mike Godwin interested in the PACE trial debate: a big thank you. I was very happy and relieved to see Mike Godwin reacting so open-minded, interested, smart and empathic in this matter. Furthermore, I hope that...
  7. MSEsperanza

    Science for ME PACE Briefing document

    Thanks, Andy. Thought the typo had been addressed before and been corrected, and only the URL was to the old version, but now it seems somehow it slipped in again (or rather the "p" slipped out again).
  8. MSEsperanza

    Briefing paper for parliamentary debate.

    The S4ME PACE summary linked in the briefing contains a typo in the two figures on p. 3+4 ("prelanned" instead of preplanned). https://www.s4me.info/docs/PaceBriefing3.pdf Is there another URL to the revised paper with the correct figure titles? @adambeyoncelowe edit: wrote "tables" instead...
  9. MSEsperanza

    Objective assessment of diverse types of MS related fatigue and fatiguability

    The following list of studies and other papers could be helpful with regard to the claim that symptoms classified as 'fatigue' can't be measured objectively, or that potential objective measures are too unspecific. In the field of MS research, some people looked for objective measures...
  10. MSEsperanza

    Worldwide Action: Sign #MEAction’s Letter to Francis Collins by May 16th

    Same here. + even skimmed the letter. [ @Trish : both links you provided in "news in brief" link to the MEA-site, also the one supposed to link to the thread here -- noticed that when i used the forum search to find the forum folks' thoughts on the campaign.]
  11. MSEsperanza

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

    The Stavanger Aftenbladet (Norway) reports: Skoene til de som ikke kan være med STAVANGER: Over 200 par sko stod helt stille på Domkirkeplassen lørdag. Eierne lå hjemme og kunne ikke være med. Google translates: The shoes of those who can not join STAVANGER: Over 200 pairs of shoes stood...
  12. MSEsperanza

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    Hm. Still skeptical. :emoji_thinking: I don't want justice for ME, unless "justice" meant sentencing ME to leave you and me forever. :emoji_v:
  13. MSEsperanza

    Turning badmouthing of ME/CFS on social media into something positive - a fundraising possibility

    Apologies for being extra-taciturn at the moment - it's for the obvious (ME) reason. In my opinion, three points to consider re the fabulous hashtag idea: 1. should be accessible for everyone, hence e.g. to be easily understood when read by a computer voice (avoid too many abbreviations) 2...
  14. MSEsperanza

    Science for ME PACE Briefing document

    This is a great summary -- a big, big thank you to all involved! I understand it's work in progress. It will be extremely helpful for any kind of advocacy work. [ETA: I am so slow - seems that posting it on the forum has been work in progress while I was writing my post :facepalm: ] In...
  15. MSEsperanza

    New German guideline for ME published today

    @Joh and @YaS , thank you!
  16. MSEsperanza

    Cochrane review and the PACE trial

    re Oxford Criteria I recall another discussion: quoted from: https://www.s4me.info/threads/iime-letter-to-mark-baker-nice-re-cbt-get-as-recommended-treatments.1949/page-3#post-34540 #54 & #56
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