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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...

A narrative?

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]?

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.

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...

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).

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...

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...

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.]

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...

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:

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...

#justScience #justScience4ME

Nothing in the Guardian?

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...

Signed. #2389

@Joh and @YaS , thank you!

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

Keeping my fingers crossed for this important debate taking place in the homeland of the PACE trial which has impact on PWME worldwide.

I'm too slow to follow all the posts in this thread, but let me share my vision for an awareness campaign [edit: or at least to start with]: An "Unrest" screening in Berlin, hosted by the Berlin Humboldt University and Free University (Faculty of Medicine) together with the German Association...