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Sweden: Masano Health digital rehab for ME/CS

Discussion in 'General ME/CFS News' started by mango, Sep 14, 2021.

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  1. mango

    mango Senior Member (Voting Rights)

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    Masano Health AB is a privately owned digital rehab company in Sweden. It's a quite new company, started in November-December 2020 according to information on their website.

    They updated their website yesterday to add information about their digital rehab for ME/CFS:
    https://www.masano.se/våra-program

    They offer a 4-week individualised rehab supported by an interdiciplinary team with "a holistic perspective".
    Masano has received a lot of questions from pwME on social media (we're still waiting for answers). Lots of pwME have already expressed an interest in taking part, too.
     
    Hutan, Wyva, Starlight and 3 others like this.
  2. Trish

    Trish Moderator Staff Member

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    That sounds quite a sales pitch - goals, goals, goals. Not a word about dealing with crashes, risks of setting goals and then failing to reach them etc. It all sounds like tell us what you want to be able to do and we'll see you get there if you stick with us. A real money spinner. Or am I too cynical?
     
  3. mango

    mango Senior Member (Voting Rights)

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  4. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Wait. I thought we had too much awareness.....

    Concrete goals for a fluctuating condition. What could possibly go wrong?

    Can you be too cynical and have ME for more than 5 minutes? And just think of all that lovely data they'll gather about you along the way! €€€!
     
  5. mango

    mango Senior Member (Voting Rights)

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    So, I've had a look at Masano's digital rehab program for ME/CFS now, as it is presented to potential participants in the 4-week pilot project (trial run? research study?) they are currently running.

    They stress that it is heavily individualised.

    There are two different levels available:

    The basic option starts with a group meeting online to introduce the technical platform and course contents. Then there is an individual session and optional tests by a physiotherapist, an individual program by a physiotherapist, interactive movement sessions (30 minutes, 3 times a week + optional Q&A for each session), access to their online "school of knowledge with theory focused on lifestyle factors and diagnosis specific content", as well as access to pre-recorded sessions.

    The full option focuses on individual sessions with occupational therapist and counsellor. More than one hour of work a day, Monday to Friday. Starts with two group meetings online to introduce the technical platform and course contents, then an individual session to plan the rehab based on anamnesis and PROM/PREMS, 3 individual sessions per week (on top of the group meetings), interactive movement sessions (30 minutes, 3 times a week + optional Q&A for each session), individual exercise programs by occupational therapist and physiotherapist and individual activities coached by the team, 2 theory/knowledge group meetings online a week (30-40 minutes), as well as team sessions and group sessions at the end of the course for evaluation, questionnaires etc.
     
    Hutan, Wyva, ukxmrv and 3 others like this.
  6. Trish

    Trish Moderator Staff Member

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    That sounds like an awful lot of activity to add to whatever necessary life demands the participants are already doing. I thought the aim was pacing, which usually means needing to cut back.
     
    Hutan, Starlight, MEMarge and 8 others like this.
  7. mango

    mango Senior Member (Voting Rights)

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    Vinnova: Tänk rätt från början etablering av ME/CFS rehabilitering på distans i Sverige
    https://www.vinnova.se/p/tank-ratt-...av-mecfs-rehabilitering-pa-distans-i-sverige/
    "Vinnova is Sweden’s innovation agency. We help to build Sweden's innovation capacity, contributing to sustainable growth. Our vision is that Sweden is an innovative force in a sustainable world."
    https://www.vinnova.se/en/about-us/
     
  8. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Wow!

    Maybe if I recover one day I might be well enough to give this a go?

    On the other hand if I could consistently do that much I'd probably go looking for a part time job, earn a little cash.
     
  9. mango

    mango Senior Member (Voting Rights)

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    It seems like this digital rehab is in collaboration with/part of the ME clinic Region Västerbotten is planning to establish in Umeå. According to Masano, at least. I haven't been able to get an official confirmation from the Region yet.

    (Discussion about the planned ME clinic can be found in the News from Scandinavia thread.)

    Edited to add clickable link.
     
    Last edited: Sep 15, 2021
  10. chrisb

    chrisb Senior Member (Voting Rights)

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    How do these quacks start a team meeting?

    Let us prey?
     
    Helene, alktipping, MEMarge and 5 others like this.
  11. mango

    mango Senior Member (Voting Rights)

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    According to a Region Västerbotten job listing for a psychologist, the planned ME clinic in Umeå will be at the Lifestyle Unit, which is part of the Occupational and Behavioural Medicine Centre. The original plan was the geriatrics unit, so this is an "interesting" change...

    Psykolog till vår nya ME-mottagning (Myalgisk Encefalomyelit), Umeå
    https://www.regionvasterbotten.se/jobb?itemid=b4031b0175b31db3d6a3a20d642bca77

    Google Translate, English
    I can't help noticing that the section Qualifications doesn't mention knowledge or experience of ME... :grumpy:

    Here's some more info about the life medicin unit:

    Region Västerbotten: Arbets- och Beteendemedicinskt Centrum Umeå: Livsmedicin
    https://www.regionvasterbotten.se/o...h-beteendemedicinskt-centrum-umea/livsmedicin

     
  12. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    [Bolding mine]

    And there you have it. No ifs, buts, or caveats, whether it's appropriate or not that's the goal, increased physical activity.
     
  13. mango

    mango Senior Member (Voting Rights)

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    A blog article by @MittEremltage about the digital rehab project and some of its apparent problems. Definitely worth a read :thumbsup:

    Tänk rätt från början
    https://mitteremitage.wordpress.com/2021/09/16/tank-ratt-fran-borjan/

    Google Translate, English
     
    Skycloud, Hutan, Snow Leopard and 9 others like this.
  14. Aslaug

    Aslaug Moderator Staff Member

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    My latest long-ish crash in April was due to an intensive two week with digital lectures every day for 6-8 hours, and a one week home exam after that. I skipped some of the non-compulsory attendance and had thought to just not participate much in the compulsory lectures, but we had group work that had to be finished in the same session and it was extremely tiring.. Based on my fibit data it took ~eight weeks or so before my level of activity was back to what it was pre-course.
     
    Milo, Hutan, Snow Leopard and 7 others like this.
  15. mango

    mango Senior Member (Voting Rights)

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  16. strategist

    strategist Senior Member (Voting Rights)

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    These rehab approaches are designed to benefit the business offering them.

    If you have the capacity to participate, you're better off using that energy for doing things that are actually fun and rewarding instead of wasting one half of it on things they only added so they could ask for money.

    Chances are "interactive movement sessions" is also not the best physical activity to spend your energy on.

    Instead consider nature or activities with friends. Best if done spontaneously, without fixed goals in mind, done for the pleasure of doing them.
     
    Last edited: Sep 16, 2021 at 8:27 PM
    chrisb, Milo, Hutan and 7 others like this.
  17. Trish

    Trish Moderator Staff Member

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    I hate to lower the tone, but that sounds like something best done in privacy with one's partner.
     
    Blueskytoo, chrisb, Aslaug and 6 others like this.
  18. mango

    mango Senior Member (Voting Rights)

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    Statement by RME Norr, the ME patient organisation in the Västerbotten region, posted by the chairman as a comment on a post on @MittEremltage's Facebook page:
     
    chrisb, Aslaug, Wyva and 6 others like this.
  19. mango

    mango Senior Member (Voting Rights)

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    There are other excellent comments on that Facebook post too, for example this one:
     
  20. mango

    mango Senior Member (Voting Rights)

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    Someone asked the Swedish Ethical Review Authority about Masano’s digital rehab for ME/CFS project. They replied that they don’t have any record of any such research study in their database. They haven’t received an ethical approval application for this project.

    So it seems the project is not a proper research study?
     

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