Search results

Almost all of us are all severely ill :( Maybe not impossible, but would definitely not be easy.

TL;DR The Swedish patient org RME is no longer biomed only, they support bps too :cry: For many years RME, the Swedish ME patient organisation, used to be biomed focused, used to take a firm stand against bps. However, the last couple of years something has changed (not through the democratic...

Henrik Berggren from Broder Daniel talks about M.E. ETA: This clip is part of a MillionsMissing event (the details haven't been translated into English yet):

Are you aware that there are several different tabs on Twitter for the hashtag searches? The link you gave now to the hashtag listing goes to Top Tweets (most popular tweets). Have you checked under Latest? The latest tweets listing is less filtered.

I'd say there is only one "real" ME patient org in Sweden. It has approx 1800 members. (One other org is basically a one man show, I believe? And there's one org focused on a different group of patients, lumping many diagnoses and undiagnosed people together, of which ME is a small part). No...

Sweden has 69 donors at the moment, which I think is great, especially in comparison with last year. What seems to have helped a little bit was posting in Swedish in the Swedish ME groups, explaining why Tuller's work is so important to us in Sweden, and giving examples that people can easily...

I too would love to learn more about that, if it's ok.

Reply from SBU (Swedish Agency for Health Technology Assessment and Assessment of Social Services) https://www.dagenssamhalle.se/debatt/sbu-reimer-utgar-fran-gamla-mecfs-kriterier-27186 Google Translate, English

Written Q & A after a seminar, by Bragée ME-center in Stockholm, Sweden (not a recommendation) https://www.bragee.se/fragor-fran-me-dagen-12-april Google Translate, English Written summary of the seminar https://www.bragee.se/fullpackat-pa-forskningsdagen Google Translate, English

I don't know their reasons, just passing the message along. Sorry.

MillionsMissing Sweden would like to livestream their events online on May 12. However, in order to get access to sending livestreams on YouTube your channel has to have more than 1000 subscribers. If you would like to help them reach that target, please subscribe here...

Advocates have been looking into it, contacted the National Board of Health and Welfare and the Social Insurance Agency's statistics department among others. No clear answers yet. ETA: I haven't yet read all of the recent reports on ME/CFS by the National Board of Health and Welfare and the SBU...

Please do click through to open/view the original article, even if you don't understand Swedish. This is a brand new platform for Reimer, and website statistics can send a very clear message, so please visit Helmfrid's article to let them know what kind of ME/CFS articles we are interested in...

I'd just like to add that disinterest isn't actually worst case scenario, though. Similar things that happen in UK and other countries happen here in Sweden too, like for example children being removed from their families and/or forced to undergo harmful bps "treatments", adult patients being...

@dave30th Yes, please do come to Sweden! I truly believe you could make a difference and be of much needed help here. When planning your trip, please make sure to get in touch with PACE-granskaren. I, too, would be more than happy to help in any way I can.

The question about governing bodies re: misconduct in research is a bit of a hot topic in Sweden at the moment, as well as the need for better protection for whistleblowers...

Excellent feature on ME on Swedish TV this morning, on the show Malou efter Tio. Interviews with Karin Alvtegen -- pwME and arguably one of Scandinavia's most widely read award-winning authors -- and her doctor Anna Lindquist (Stora Sköndal ME/CFS-mottagning). Available to watch online for 30...

https://www.storkapp.me/ is brilliant too :)

In their recently published article Acceptance & Commitment Therapy for ME/CFS (Chronic Fatigue Syndrome) – a feasibility study (thread here) the authors concluded that "Changes in psychological flexibility are related to improvements." Psychological flexibility is defined as "the ability to...