News from Scandinavia

Discussion in 'Regional news' started by Kalliope, Nov 2, 2017.

  1. mango

    mango Senior Member (Voting Rights)

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    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.
     
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  2. Trish

    Trish Moderator Staff Member

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    I don't respond well to people who claim a cure but you have to buy the book to find out what it is.
     
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  3. Solstice

    Solstice Senior Member (Voting Rights)

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    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.
     
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  4. mango

    mango Senior Member (Voting Rights)

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  5. mango

    mango Senior Member (Voting Rights)

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    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
     
  6. Sean

    Sean Moderator Staff Member

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    Good start.
     
  7. rvallee

    rvallee Senior Member (Voting Rights)

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    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.
     
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  8. Yan

    Yan Established Member (Voting Rights)

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    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.
     
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  9. Sean

    Sean Moderator Staff Member

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    The best way to clear muddied waters is to simply stop stirring them up.
     
  10. mango

    mango Senior Member (Voting Rights)

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    Yan and Peter Trewhitt like this.
  11. mango

    mango Senior Member (Voting Rights)

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    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/
     
  12. mango

    mango Senior Member (Voting Rights)

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    Paywalled article in a local newspaper.

    Märgben, köttbars och kycklingknäcke: Dieten blev Jennies räddning
    https://www.borlangetidning.se/2024...-kycklingknacke-dieten-blev-jennies-raddning/
     
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  13. mango

    mango Senior Member (Voting Rights)

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    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/
     
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  14. Kalliope

    Kalliope Senior Member (Voting Rights)

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    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. :banghead:
     
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  15. mango

    mango Senior Member (Voting Rights)

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    This conference started today.

    RME says on their Facebook page that there are about 100 people attending in person and 600 watching online.
     
  16. mango

    mango Senior Member (Voting Rights)

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    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
     
  17. mango

    mango Senior Member (Voting Rights)

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  18. mango

    mango Senior Member (Voting Rights)

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    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
     
    Last edited: Oct 18, 2024
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  19. mango

    mango Senior Member (Voting Rights)

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    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/
     
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  20. mango

    mango Senior Member (Voting Rights)

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    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/
     
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