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‘Help Holger now’ video about a Swedish man with very severe ME

Discussion in 'General ME/CFS news' started by mango, Jun 8, 2020.

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  1. mango

    mango Senior Member (Voting Rights)

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    Moderator note
    posts below have been moved from:
    https://www.s4me.info/threads/news-from-scandinavia.647/



    "Help Holger now!" 13 minutes long video in Swedish about Holger who is very severely ill with ME. Made by his younger brother.

    https://www.youtube.com/watch?v=_z2SciAO_sc




    (I haven't been able to watch the whole video yet, but the first few minutes are really really good!)

    More info here, Holger's family is fighting for better home care and medical care, petitioning politicians etc.



    A little bit more info here too, on (internationally famous/beloved crime fiction author, pwME) Karin Alvtegen's birthday fundraiser for OMF:



    ETA: #HjälpHolgerNu #Justice4Holger
     
    Last edited by a moderator: Jul 11, 2020
    mango, Jun 8, 2020
    #1
    Yessica, sebaaa, Anna H and 8 others like this.
  2. Ravn

    Ravn Senior Member (Voting Rights)

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    Even with my not exactly brilliant ability to follow spoken Swedish, this is a powerful and very moving video.

    Part of it describes very severe ME - this deserves to be subtitled for a wider audience.

    The other part is about the failure - refusal may be a better word - of the Swedish health and welfare systems to provide adequate help.
     
    Ravn, Jun 9, 2020
    #2
    Yessica, merylg, sebaaa and 8 others like this.
  3. mango

    mango Senior Member (Voting Rights)

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    mango, Jun 9, 2020
    #3
    Yessica, MeSci, Amw66 and 12 others like this.
  4. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    I've heard this kind of story many times now. It goes roughly like this: young person in school gets mono/flu-like illness, begins to struggle, is diagnosed with depression and treatment seems to make things worse, they keep getting worse and eventually are diagnosed with ME/CFS. They never get any real help. The final outcome varies, sometimes they eventually get better, some stabilize, others decline further and become very severly ill like Holger.
     
    Hoopoe, Jun 9, 2020
    #4
    Yessica, Sid, MeSci and 14 others like this.
  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    A devastating story, and an all too familiar one :cry:

    The local newspaper Skillingaryd has an article about Holger's family's plea for help. A demonstration was held today with 45 relatives, friends and other supporters of the family.

    - We need urgent help for Holger to continue to live. We need help now. The public service people blame the politicians and vice versa. Someone with another placard shouts "There are more people who are sick in ME who need help, our daughter".


    Skillingaryd: "Ingen lyssnar på oss"
    google translation: "Nobody listens to us"
     
    Kalliope, Jun 9, 2020
    #5
    Forestvon, Shinygleamy, MeSci and 12 others like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    Monstrous. Just plain monstrous disregard for human life.

    Once we pass a tipping point that ends the state of discrimination, it will not be accepted to say they didn't know. They did, and they chose this, as responsible professionals with all the information available to them to make wise decisions and choosing to disregard it entirely. At every step the worst possible decisions are made, still to this day. Those responsible to fix this are the biggest obstacle.

    All to feed the psychosomatic death machine, its belly filled with tens of millions and it just wants millions more, an endless loop of suffering. One of the most brutal ideology ever invented and it is popular and jolly and good fun for those who work the machine and those who approve of it.

    Just make this nightmare stop.
     
    rvallee, Jun 9, 2020
    #6
    Shinygleamy, MeSci, JoanneS and 10 others like this.
  7. mango

    mango Senior Member (Voting Rights)

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    Another sympathetic news article about Holger:

    Jönköpings-Posten: "Demonstranter tar strid för ME-sjuke Holger: 'Vi är utmattade, förnedrade och gråter hela tiden'"

    https://www.jp.se/artikel/demonstranter-i-skillingaryd-och-vaggeryd-hjalp-holger-nu

    Google Translate, English "Protesters fight for ME-ill Holger: "We are exhausted, humiliated and crying all the time""

    ETA:
     
    Last edited: Jun 10, 2020
    mango, Jun 10, 2020
    #7
    Shinygleamy, sebaaa, Anna H and 7 others like this.
  8. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Yep, says it all. As the video about Holgar highlights it's not just us patients caught up but our loved ones too.

    Holgar's brother did a great job describing the problems he faces but they are trapped in the nightmare alongside him. They have no choice but to struggle on unaided and the burden of care for someone that ill is very heavy & expensive. Yet, if they don't carry on they would have to abandon him to treatment which would be tantamount to torture.

    This from one of the world's supposedly happiest countries and one of the wealthiest. Not that any of the others are much better.
     
    Invisible Woman, Jun 10, 2020
    #8
    Forestvon, Shinygleamy, MEMarge and 7 others like this.
  9. mango

    mango Senior Member (Voting Rights)

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    mango, Jun 11, 2020
    #9
    Anna H, Invisible Woman, rvallee and 3 others like this.
  10. mango

    mango Senior Member (Voting Rights)

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    mango, Jun 11, 2020
    #10
    sebaaa, Anna H, Invisible Woman and 3 others like this.
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    Anton, Holger's brother, wrote an update on Reddit.

    Code:
    https://old.reddit.com/r/cfs/comments/gzv16b/help_holger_now_a_plea_from_the_brother_of_a/g0rmmr8/
     
    rvallee, Aug 8, 2020
    #11
    It's M.E. Linda, merylg, JoanneS and 5 others like this.
  12. mango

    mango Senior Member (Voting Rights)

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    mango, Aug 9, 2020
    #12
    ukxmrv likes this.
  13. mango

    mango Senior Member (Voting Rights)

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    mango, Sep 25, 2020
    #13
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  14. mango

    mango Senior Member (Voting Rights)

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    They are now threatening to section Holger, if he doesn't go volontarily :cry: Apparently the psychiatrists at Ryhov hospital believe they can cure Holger with a few weeks of inpatient psychiatric treatment :mad::cry:

    Holger's family is being totally ignored and steamrollered by the psychiatrists, and are now (still, again...) desperately looking for help. They are in particular looking for medical professionals like physicians etc, who have a genuine understanding of very severe ME, who would be willing to try and educate/talk to the ignorant psychiatrists about very severe ME.

    Can anybody help? @Jonathan Edwards, do you maybe have any contacts that could be of help? @PhysiosforME?

    More info on Help Holger Now Facebook page:




    Here's a news article published in their local paper today (paywalled), about the hospital visit last week:
    https://www.jp.se/logga-in/anhoriga...-efter-undersokning-pa-ryhov-mardromsvistelse
     
    Last edited: Dec 10, 2020
    mango, Dec 10, 2020
    #14
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  15. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    from the photo that could be Whitney; maybe someone could tweet Janet Dafoe?
    eta: to get more coverage
     
    Last edited: Dec 10, 2020
    Sly Saint, Dec 10, 2020
    #15
    shak8, andypants and cfsandmore like this.
  16. mango

    mango Senior Member (Voting Rights)

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    From the paywalled news article mentioned above:
    :cry::cry::cry:
     
    mango, Dec 10, 2020
    #16
    shak8, andypants, Hutan and 5 others like this.
  17. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    It makes my blood run cold..... I can only imagine how horrific and stressful this is for both Holgar and his family.

    If he has been assessed by a psychiatrist recently would one they be prepared to get involved on his behalf? Speak directly to who ever it is that thinks sectioning is more appropriate than nutrition?
     
    Invisible Woman, Dec 10, 2020
    #17
    JoanneS, shak8, andypants and 4 others like this.
  18. Midnattsol

    Midnattsol Moderator Staff Member

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    This sounds so awful :cry:

    I'm pretty sure the Swedish dietician education is similar to the Norwegian one, which means no information about ME (CFS is mentioned in one of the main used books in clinical nutrition, but that's about half a page.. I can't remember if severe patients were even mentioned and they wrote about 1-2 days of "post exertional fatigue", not PEM. It was updated this year but haven't seen if any changes were done to this chapter).

    Not sure if it can help, but would it be possible to contact Dietisternas Riksforbund? They might know a dietician with knowledge of ME, or at least advice to get access to a dietician? Even a dietician without specialist knowledge should be able to help when the patient needs nutritional support, is bedridden etc! Parenteral nutrition over time is problematic on many levels, it makes me furious he doesn't get the help he needs.
     
    Midnattsol, Dec 10, 2020
    #18
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  19. Simbindi

    Simbindi Senior Member (Voting Rights)

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    Simbindi, Dec 10, 2020
    #19
    shak8, Hutan, cfsandmore and 1 other person like this.
  20. Hutan

    Hutan Moderator Staff Member

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    There's the draft NICE ME/CFS guidelines, which include some protections for people with very severe ME/CFS. Maybe they would help give the steamrollering psychiatrists some pause for thought?
     
    Hutan, Dec 10, 2020
    #20
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