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News from Scandinavia

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

  1. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    They have started a debate between to alternatives the premise of which is wrong.

    The issue isn't is it physical or psychological. The issue is for those who get lingering post-viral symptoms how many will recover without ANY intervention and how many will remain ill. For those who remain ill how well does a psychological intervention work?

    What matters is what is factual. No argument will ever be concluded one way or the other. And it is the province of true believers to continue on in the vein. We need facts. We need science. The psychological proponents have neither. And so they deflect, obfuscate and use ad hominem attacks when pressed.
     
  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    They know it's in their interests to try to frame the debate in those terms. It makes the problems with SMILE, PACE, etc irrelevant and suddenly it just becomes a simple matter of whether or not you're open minded enough to recognise that psychological factors can affect how people feel.
     
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  3. Aslaug

    Aslaug Moderator Staff Member

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    I get really frustrated about the accusation towards the Norwegian ME Association, that they (and us members) are close minded, and that patients who are more open to other explanations have nowhere to go and are persecuted and not listened to.
     
    cfsandmore, Kitty, MEMarge and 9 others like this.
  4. mango

    mango Senior Member (Voting Rights)

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    Opinion piece by reps for three Swedish patient organisations.

    "Ge upprättelse åt de som missbedömts och försummats i sjukvården"
    https://www.altinget.se/artikel/ge-upprattelse-aat-de-som-missbedomts-och-forsummats-i-sjukvaarden
    ETA:
     
    Last edited: Mar 8, 2021
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  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    It's good of them to bring attention to this, but I wish they'd underlined that it is biomedical research that's needed the most when they write (my bold. text google translated):

     
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  6. mango

    mango Senior Member (Voting Rights)

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    I agree with you. But as has been discussed here on the forum before, RME does want there to be an emphasis on psychosocial research and care too. Psychosocial research grounded in a biomedical view of the disease, I would hope, but still... RME has a history of silencing members who criticise BPS. Also, the RME person who wrote/signed the piece is a retired psychologist.
     
    Last edited: Mar 8, 2021
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  7. mango

    mango Senior Member (Voting Rights)

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    Watch the interview with Björn Eklund here:
    https://www.tv4.se/artikel/jIGROJUZ...bades-av-me-lag-i-saengen-23-timmar-om-dygnet
    Watch a part of the interview with Björn Bragée here:
    https://www.tv4.se/artikel/71qQqKd4...tidscovid-samma-som-me-bjoern-bragee-reder-ut
    ETA: Agnes Arpi is also interviewed in the long covid video.
     
    Last edited: Mar 8, 2021
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  8. trudeschei

    trudeschei Established Member

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    An English language summary of the report is now available at the NOrwegian ME Association website:
    https://www.me-foreningen.no/wp-con...-on-the-course-of-illness-English-summary.pdf
     
  9. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    It's a rather ironic accusation since the BPS have never been open to the idea that the primary cause and need for treatment is a biological one. ALL of their research is a testament to that. They take as 'proof' that ME or MUS are all psychosomatic the fact that up until now there has been no definitive biological mechanism found. And they have been at it for decades while people are still getting and staying ill despite their 'effective' treatment.

    I know I'm repeating myself but what they need to do is answer the question of whether people would recover without any treatment by using some robustly designed transparent trial if they want to really prove that it is their treatment that is effectively treating people or not.

    And this is not directed at you @Aslaug as I know you and we all here know this. I understand your frustration.
     
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  10. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Also, I'd just like to add that any such study would need to be large and longitudinal out past 5 years. Covid I think offers such an opportunity.
     
  11. Ravn

    Ravn Senior Member (Voting Rights)

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  12. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I had no idea that the recovery number was so low. My thoughts on a study are moot if this is the case.

    Although I couldn't find (not saying it's not there) information on how long people were followed nor if the people responding were captured at the beginning of illness (though I assume this must be the case).

    If this recovery number is accurate then there is a load of trouble ahead for the BPS cabal though I suspect that by now they are working on two tracks -- official pronouncements that their research is all good and based in fact and quietly carrying on with a very altered type of treatment in clinic while calling it the same thing as they've always done.

    Their real problem may be any zealots that trained early and are true believers and refuse to be retrained. I guess we will see what we will see as time moves forward.
     
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  13. Anna H

    Anna H Senior Member (Voting Rights)

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    Here are my thoughts after watching Malou's interview with Björn Eklund and Bragée.

    It felt a bit odd, like an advertisement for Björn Eklund's book, which he apparently has distributed to officials in the Swedish government's Social Committee.
    But it is framed as something that will give ME patients hope -
    because one person played Russian roulette with his life, and won.
    When others in the same situation weren't so lucky and suffered severe deterioration and were left indebted. Or even died. None of this is mentioned in the show.

    I wish the Rituximab situation would have been elaborated upon and described with more nuance.
    They just mention they've talked about the study before, and the results were negative, eg. did not give any evidence to use the medicine as a treatment for ME patients.

    Eklund describes how he decided to "up the ante" when he didn't feel any difference after the forth treatment. He increased the dosage from 2x500 to 5x1000 and says he started to feel better after the first dose of 1000.

    Eklund says he traveled to Norway two more times for doses of 2x2000, and felt increasingly better.
    He describes himself as 90% recovered now, but is taking antivirals prescribed by Jonas Axelsson from the RED Clinic.

    I find it strange that a patient can decide the dosage of such a strong medicine themselves. It's also weird that 'Malou efter tio' chooses to highlight such a special and individual story and frame it as significant for the ME field at large.
    That single individuals recover or improve considerably isn't new, whether spontaneously or in connection with a treatment.

    The fact that the Norwegian doctor Dagfinn, who administered the medicine, had his license revoked was not mentioned either. That's undeniably interesting information.

    There's a lot of spin, and things are omitted that would nuance the picture.

    I don't know who's responsible, if it's Malou or if Bragée could have contributed to a more well rounded picture.
    The editors of the show don't seem to do much research before the features on ME.

    Bragée said it would be great if larger and more studies could be done on Rituximab, but the medicine is so expensive that no clinic can afford to do a study.
    Is that really something that should be done?
    More studies on Rituximab?

    Isn't what we need to move on to be able to categorize different subgroups?

    But they weren't able to distinguish any subgroups in the Rituximab study either, is that correct?

    By the way, how did Fluge and Mellas' Cyclophosphamide study go?

    I haven't read Björn Eklund's book, but single individuals with ME recovering and/or improving isn't new, so I really don't understand how this story creates hope?

    That ME researchers applying for grants, from the NIH for example, get them approved, that would give me hope.
    Or that the research grants for ME were on a par with grants for MS or Alzheimer's.
    Or that knowledge of ME in health care systems, municipalities and Social Security Agencies was so great, and the disease so accepted, that we got the support and care we need without hesitation and while being treated with respect. That would give me hope.

    Björn Eklund felt he could just as easily "throw in the towel", "had nothing to lose" when he had been bedridden 23 hours/day for 2 1/2 years. That doesn't mean all severe ME patients feel that way, and not the whole time.

    More biomedical specialist clinics (like Stora Sköndal, which is closing down) would improve the situation a lot for people living with ME. Because it's not just about the disease itself, but also about being mistrusted and neglected by the healthcare system, society at large and sometimes even friends and family.

    I would love to get better, but even if I don't, I want to live. I love my life, however restricted it might be, and personally I would never risk my life for a chance to get well. "

    Edit: clarity, grammar
     
    Last edited: Mar 10, 2021
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  14. mango

    mango Senior Member (Voting Rights)

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    I agree 100%! Thank you so much. So many incredibly important observations/points..!
     
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  15. Wyva

    Wyva Senior Member (Voting Rights)

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    This is an older video of Swedish tennis player Robin Söderling talking about his mononucleosis/glandular fever and lingering symptoms in English. He got GF in 2011 at the age of 26, and this video is from 2014. He hadn't played tennis for years and he officially announced his retirement about a year after the video. I know this is quite old but I couldn't find it on this forum and thought it was worth posting.

    The part about his illness starts around 2:20 and they mostly talk about this until the end of the video. I wonder how he is doing now.

     
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  16. Rain

    Rain Senior Member (Voting Rights)

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  17. Wyva

    Wyva Senior Member (Voting Rights)

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  18. Hutan

    Hutan Moderator Staff Member

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    Oh, that is a shame. Yes, his response to the 'are you depressed' question in that first interview indicated very clearly, I thought, that mental health issues weren't the problem. I guess it highlights yet again the danger of having any well known person becoming the poster child for the illness when there is so much misinformation around that can change their interpretation of their experience. It would be interesting to know what changed his mind about the cause of his illness.
     
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  19. Aslaug

    Aslaug Moderator Staff Member

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    New article in Khrono (paper for universities) about how ME/CFS BPS researchers are bullied and leaves the field.


    Betent forskning: Én forsker ga seg. En annen velger å stå i det
    https://khrono.no/betent-forskning-n-forsker-ga-seg-en-annen-velger-a-sta-i-det/559256
    Google translate: Inflamed research: One researcher resigned. Another chooses to stand in it
    https://translate.google.com/translate?hl=en&sl=auto&tl=en&u=https://khrono.no/betent-forskning-n-forsker-ga-seg-en-annen-velger-a-sta-i-det/559256

    Some "highlights"
    - It's common that ME/CFS researchers are bullied.
    - Draft NICE guidelines go against the scientific community and NICE has been pressured by activists.
    - Researchers that are against the BPS model are close to pwME and not objective.

    The Norwegian ME association has a reply
    ME-foreningen kjenner ikke til organisert hets
    https://khrono.no/me-foreningen-kjenner-ikke-til-organisert-hets/563237
    Google translate: The ME association is not aware of organized incitement
    https://translate.google.com/translate?hl=en&sl=auto&tl=en&u=https://khrono.no/me-foreningen-kjenner-ikke-til-organisert-hets/563237&sandbox=1
     
    Last edited: Mar 16, 2021
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  20. Hutan

    Hutan Moderator Staff Member

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    Terrific rebuttal by the Norwegian ME Association in the Khrono article:

     

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