Press release about a new Swedish non-fiction book about recovering from ME. (Sharing for informational purposes only, as I haven't read it myself.) Att övervinna kroniskt trötthetssyndrom: "Svarta hål och körsbärsblom" av Karin Tuvgren https://www.mynewsdesk.com/se/lava-...l-och-koersbaersblom-av-karin-tuvgren-3336199 Looks like she believes a change of diet made her recover, according to this Facebook post by the author.
My Dutch lawyer also told me it was easier to get disability benefits with a psychiatric diagnosis. I was lucky to have heard some cautionary tales and I didn't want to have that diagnosis hovering over me for the rest of my life. These systems aren't equipped to handle anything than the run-of-the-mill disabilities in my experience, I also got rejected twice.
(Not ME) A Swedish article on functional neurological disorder, FND. Not a recommendation. Skidtalangen Ebba kunde inte gå ordentligt – nu har hon fått svar https://www.dn.se/sport/skidtalangen-ebba-kunde-inte-ga-ordentligt-nu-har-hon-fatt-svar/ An older article about the same person, published in December 2023: Skidtalangen Ebba Larsson vaknade en dag utan att kunna gå ordentligt https://www.dn.se/sport/skidtalangen-ebba-larsson-vaknade-en-dag-utan-att-kunna-ga-ordentligt/
Finland: Terveydenhuollon ammattilaisten tietämystä kroonisen väsymysoireyhtymän (ME/CFS) ja long covidin hoidosta ja kuntoutuksesta tulee lisätä https://www.mediuutiset.fi/debatti/...e-lisata/1149ce0f-8847-4585-a2ff-8a29d15fdb6d
If only they could let go of the multidisciplinary rehabilitation now. Having people go to multiple exhausting appointments to help them manage their energy makes as much sense as having people on the verge of destitution pay hundreds of dollars to attend classes that will tell them how to manage their budget. Most patients have to teach this stuff to most health care professionals they encounter, how does it make sense that they will teach us what we tell them but understand far less, and are still unable to grasp?! The key concept remains convalescence. It's not an active process. It's a supportive one. They need to let it go. And if it wasn't for Disney being so damn litigious it'd make a great campaign against the psychosocial ideology. No mention of anything beyond that they need to Let it go. Nothing else said about the psychologization, just Let it go.
Even though this is written as opinion piece, it's still interesting because it has over 60 signatures on it. Most by physiotherapists, then a few nurses. Probably organized by Hanna Markkula who is a physiotherapist and has been very active in recent years promoting information about ME/CFS and Long Covid among other things. Also just about the only person that has offered real help to me in form of advice.
October is international dysautonomia awaress month. Dysautonomi Sverige is running an awareness campaign this year (in Swedish), and they usually publish very high-quality science based content, so I would like to recommend those interested to follow them on social media. They are well-informed about ME as well. https://www.instagram.com/dysautonomisverige/ https://www.facebook.com/DysautonomiSverige
RME Stockholm organised a talk on 30 September, to teach healthcare professionals at Södertälje Hospital about ME. Among the people giving presentations were a person with ME, the chairperson of RME Stockholm, Björn Bragée and a pain physician. Around 40 guests attended the talk. The talk (or parts of it?) was recorded, and is available to watch through the link below. https://rme.nu/kunskapsspridning-om-me-pa-sodertalje-sjukhus-30-9/
Paywalled article in a local newspaper. Märgben, köttbars och kycklingknäcke: Dieten blev Jennies räddning https://www.borlangetidning.se/2024...-kycklingknacke-dieten-blev-jennies-raddning/
An article written by Björn Bragée, in an online membership magazine for serior citizens. Tröttare än vanligt efter covid? https://www.senioren.se/expert/trottare-an-vanligt-efter-covid/
Thanks for sharing, @mango I thought this was a very good article where he points back to history and shows that this is not at all a new phenomenon. But then he manages to imply that help is in rehabilitation, without a word on pacing or on PEM and the importance of not triggering it.
This conference started today. RME says on their Facebook page that there are about 100 people attending in person and 600 watching online.
A news article today about the fact that more and more courts are letting AI do the job of masking sensitive information in judgments and preliminary investigations. With the Swedish National Courts Administration's own tool, "fewer errors will be made and the work will go faster". Interestingly ME/CFS is one of the triggers mentioned on this fairly short list of words. The word "diagnosis" is also on the trigger list, but very few other diagnoses (only epilepsy, eating disorders and whiplash). Så ska AI hjälpa till att maska uppgifter från domstolarna https://www.svt.se/nyheter/lokalt/j...lpa-till-att-maska-uppgifter-fran-domstolarna
An Icelandic documentary about ME. https://www.ruv.is/sjonvarp/spila/me-sjukdomurinn-ormognun-uti-a-jadri/33851/a2qg5h
Recorded talks and a panel discussion from this conference are now available on RME's YouTube channel (in English). Jonas Bergquist, David Systrom, Artur Fedorowski, Ingrid Gurvin Rekeland, Suzanne Vernon, Resia Pretorius. https://www.youtube.com/@rmesverige1475
Paywalled article in a local newspaper: Maja, 20, lever sitt liv i en säng – blev aldrig frisk efter covid https://www.avestatidning.com/2024-...-liv-i-en-sang-blev-aldrig-frisk-efter-covid/
This article was apparently the first in a whole series of articles about Maja. Still paywalled, unfortunately. 3 articles have been published so far, several more to come: https://www.avestatidning.com/story/a4897877-dade-4ffe-9b2a-e69392b81d8b?pageSlug=fallet-maja Experten om postcovid: ”Svårt att få rätt vård” https://www.avestatidning.com/2024-10-18/experten-om-postcovid-svart-att-fa-ratt-vard/
