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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...

Thanks @Joh , you completely got my point.* Hoping I will be able to add some thoughts soon. *Edited: (even though I didn't elobarate.)

Lacking the resources to write more -- just would like to let you know how the German Patient Organisation for MS "AMSEL" handles the issue of false (psycho-) perceptions of illness related fatigue. Apologies for the Google translation (always funny though) - hope the key message is not lost...

:-( How embarrassing (in German: "zum Fremdschämen")! Thanks, Joh, for spreading the information. Unfortunately, terminating membership in Fatigatio is possible not before the end of 2018, but I already sent an E-Mail, and announced the formal letter which is necessary.

@Marco Please accept my apologies for the delayed response. In MS, there are many different types of fatigue, too. Actually, some clinicians distinguish and are really interested in investigating the different forms. At least, they differentiate between "mental", "cognitive" and "motor"...

Done (the poll) . Hopefully not too late (high noon local time).

Thank you for this very important thread. Only was able to read a small part of all the answers. Very good points already have been made to this complex issue of a complex disease. In case these were not mentioned yet, I'd like to contribute two points: 1) Symptoms of PEM may include...