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I'd like to add that I believe our activism has to be very well thought-out, carefully aimed, based on solid facts & evidence, and with a good understanding on how these processes work etc. I can't help feeling as if we are walking a tightrope... even small mistakes can have devastating...

Svenska Dagbladet: Strandhäll: Kunskap om kronisk trötthet för låg https://www.svd.se/kunskap-om-kronisk-trotthet-for-lag Google Translate, English ("Strandhäll: Too little knowledge about chronic fatigue")...

Personally, I'm not sure what to think about this... Could go either way, I guess? I've read some of the drafts of the regional "healthcare programs"/clinical guidelines for ME/CFS that are currently under development, and in my opinion they are leaning way too heavily towards BPS :( I would say...

Yes :( The draft version of STM's (the Ministry of Social Affairs and health) report on the planned new guidelines seem to be based on Fink's model :wtf::mad::nailbiting::cry::eek: http://stm.fi/artikkeli/-/asset_publisher/suositus-toiminnallisten-hairioiden-hoidon-jarjestamisesta-lausunnolle...

Annika Strandhäll, minister of social affairs

Sorry you're having trouble accessing Google Translate. What does does it say in Swedish? No, you don't have to log in. They don't however allow adblockers, could that be the problem perhaps? I just posted a new thread about the Government's statement here: Swedish Government: More knowledge...

Regeringen: Mer kunskap behövs för bättre stöd till personer med kroniskt trötthetssyndrom http://www.regeringen.se/pressmeddelanden/2018/05/mer-kunskap-behovs-for-battre-stod-till-personer-med-kroniskt-trotthetssyndrom/

Three articles in Aftonbladet (Sweden) today: Camilla var sjuk i ME/CFS – reste utomlands för att avsluta sitt liv https://www.aftonbladet.se/nyheter/a/jP78d9/camilla-var-sjuk-i-me-cfs--reste-utomlands-for-att-avsluta-sitt-liv Google Translate, English ("Camilla was ill with ME/CFS -- traveled...

https://sv.wikipedia.org/wiki/Finn_Bengtsson https://twitter.com/finnbengtsson https://finnbengtsson.wordpress.com/ https://sv.wikipedia.org/wiki/Amir_Adan https://twitter.com/amiradan

The term/concept central sensitivity syndromes is used in this proposition to the Swedish government too :( Reading comments by pwme and their carers etc, it's sadly very obvious that they don't understand what CSS actually is. After having it explained to them, almost all of them still choose...

"Due to a large amount of referrals and longer waiting times, we will not be accepting new referrals between 1 May and 31 August. The estimated waiting time for first time visitors is at least 14 months." http://www.storaskondal.se/vara-verksamheter/neurologisk_rehabilitering/mecfs-mottagning/

Linköping Universitet: Nya rön kring kroniskt trötthetssyndrom https://liu.se/nyhet/nya-ron-kring-kroniskt-trotthetssyndrom Google Translate, English ("Linköping University: New Findings about Chronic Fatigue Syndrome")...

Another similar common view, at least among Swedish neurologists, is to describe ME as a "cultural manifestation/expression" (kulturyttring) ... :wtf:o_O:banghead:

Still 'No' for me.

I voted 'No'. To me the term "environmental illness" has the same vibes as "central senstivity" in relation to ME: a completely different meaning than it would have in any other context, any other recognised/accepted disease. The way I interpret what I've read so far, it's just another...

There's also this: https://www.omf.ngo/2017/07/12/norwegian-prime-minister-on-me-cfs/

I've made my second donation now, and at the same time I helped a friend with ME to donate too (the payment process was too difficult for her cognitively). Also, a couple of weeks ago I asked the patient organisation I'm a member of to please make a donation, and they did :) 83%, $62,931. 791...

Great questions and suggestions, thank you :) I too would love to know what kind of support would be the most effective, what strategy and tactics would be worthwhile, and if there's anything we can do to help. RME Stockholm (a local group of the patient organisation RME Sweden) would probably...

I agree, it is sad :( It's difficult financially and also difficult to find and recruit competent people with sufficient skill and knowledge. Moneywise Stora Sköndal and Bragée currently have very similar agreements with Stockholm County Council, but as healthcare providers they seem to have...