The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

General ME-related news from Scandinavia

Discussion in 'General ME/CFS News' started by Kalliope, Jun 18, 2017.

  1. Kalliope

    Kalliope Senior Member

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    Article in a Danish newspaper about a senior doctor who believes this trial can't prove there are no connections between HPV-vaccine and ME.

    Politiken: Overlæge afviser frikendelse av hpv-bivirkninger trods nyt studie
    Google translation: Doctor rejects the clearing of HPV side effects despite new study

    Don't really know what to make of this myself, but note that ME is debated in Danish media without doctors from Århus claiming it to be a somatoform disorder (albeit a "controversial disorder"). So guess that's something..
     
    Jan, Invisible Woman, Hutan and 2 others like this.
  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Do you happen to know the percentage increase during that period? Or perhaps have annual data?

    We recently learned of a large increase in ME diagnosis in Canada. It would be curious if similar was occurring in Norway.
     
    Invisible Woman, mango and Kalliope like this.
  3. Kalliope

    Kalliope Senior Member

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    No, have no numbers unfortunately. There would anyway be some weakness regarding usage of different criteria and assessment before an ME-diagnosis. But would have been interesting to know the numbers diagnosed nevertheless. There is consensus of an increase, however.
     
  4. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Does anyone know if people get 'prescribed ' GET in Sweden? Is it a recommended treatment?
     
    MEMum likes this.
  5. mango

    mango Senior Member

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    There are, so far, no national guidelines for ME/CFS treatment in Sweden. But yes, some pwme do get 'prescribed' GET.

    I was forced to do it many years ago (under threat of losing my only income/sickness benefit). Made me much much worse, went from moderate to severe/very severe, and it caused permanent harm.
     
    Jan, MEMum, Invisible Woman and 6 others like this.
  6. Kalliope

    Kalliope Senior Member

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    A women's magazine had an article today about a mother with a child with ME.

    Jeg gikk turer om kvelden og gråt

    for some reason I couldn't google translate it from Norwegian to English, but if someone else can, please add a link :) It is a good article.
     
    mango and Lindberg like this.
  7. mango

    mango Senior Member

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    Linking Google Translate doesn't work for me either. Here's a copy of the (unedited) translated text:

     
    Last edited: Jul 26, 2017
  8. Hutan

    Hutan Senior Member

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    I didn't follow all of that. But I understood enough to make me cry.
    My son turned 18 yesterday.
     
    IreneF, Old Bones, Sidereal and 10 others like this.
  9. mango

    mango Senior Member

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    New opinion piece, from Denmark (behind paywall):

    Politiken.dk: Jeg har været fejlbehandlet i 20 år. Hvorfor vil Sundhedsstyrelsen ikke anerkende, at ME ikke er en psykiatrisk lidelse? ("I've been wrongly treated for 20 years. Why does the National Board of Health not want to acknowledge that ME is not a psychiatric disorder?")
    http://politiken.dk/debat/kroniken/art6046031/Jeg-har-været-fejlbehandlet-i-20-år.-Hvorfor-vil-Sundhedsstyrelsen-ikke-anerkende-at-ME-ikke-er-en-psykiatrisk-lidelse1

    Google translate, English:
    https://translate.google.se/translate?sl=da&tl=en&js=y&prev=_t&hl=sv&ie=UTF-8&u=http://politiken.dk/debat/kroniken/art6046031/Jeg-har-v%C3%A6ret-fejlbehandlet-i-20-%C3%A5r.-Hvorfor-vil-Sundhedsstyrelsen-ikke-anerkende-at-ME-ikke-er-en-psykiatrisk-lidelse1&edit-text=
     
    Last edited: Jul 27, 2017
  10. MEMum

    MEMum Senior Member

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    18 and 21 were v hard birthdays.
     
  11. Kalliope

    Kalliope Senior Member

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  12. Kalliope

    Kalliope Senior Member

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  13. Kalliope

    Kalliope Senior Member

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    A Norwegian news site on research have covered the PACE-debate

    Hard kritikk av stor ME-studie

    Hard criticism of major ME study

    The researchers behind the strongly criticized PACE study will not participate in a scientific debate on the matter. It is disappointing, writes the editor of the Journal of Health Psychology, which dedicated a whole number to the debate around the study.

    "They behaved as if they should have a kind of right not to respond to criticism, according to editor David F. Marks.
     
    MEMum, Invisible Woman, Jan and 5 others like this.
  14. Kalliope

    Kalliope Senior Member

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    Prime minister and health minister in Norway want a standard process for ME-patients on assessment and care. Provided patients and patient organisations are invited to contribute to developing this standard process, this might be very promising news :)

    VG: Åpner valgkampen: Høyre lover pakkeforløp for ME-pasienter
    Google translate: Opens election campaign. Conservative party promise package for ME-patients

    - If you have a manual for how to do this, how to diagnose - for ME, the diagnosis question is discussed - what kind of offer should be given, what to do if the offer is not working.To start all these things, it is to have a structured course, "says Solberg to VG.
     
    MEMum, Invisible Woman, Hutan and 7 others like this.
  15. A.B.

    A.B. Senior Member

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    @Kalliope that is exactly what is needed. A failure to properly diagnose patients causes additional problems.
     
  16. Kalliope

    Kalliope Senior Member

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    Another article about the standardised manual for ME-patients which was suggested yesterday by the prime minister of Norway. Interviews the former general secretary of the Norwegian ME Association, Anette Gilje. Mentions the PACE-trial.

    Endelig tas ME på alvor
    google translate: Finally, ME is taken seriously
     
  17. Kalliope

    Kalliope Senior Member

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    A plea to the Norwegian health minister on Facebook from a severe ME-patient stuck in an institution with dreadful care.

    Please show your support with a "like" or a comment. Maybe there are other stories about the lack of care for severe ME-patients around the world you can share in the comment section to show that this is affects many and is a big concern?
     
    MEMum, pernille, Manganus and 3 others like this.
  18. Dolphin

    Dolphin Senior Member

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    (This is from July)
    https://translate.google.com/transl...rskningsjubel-tarmprosjekt-me-syke/&sandbox=1


     
  19. Kalliope

    Kalliope Senior Member

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  20. Kalliope

    Kalliope Senior Member

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    Karina Hansen's doctor, who lost his authorisation after decreasing her dangerously highly dosed medication, goes to court.

    He says:
    "What they say is that you should not treat this girl unless you work in a particular department in Denmark.So where is patient safety and the patient's right to choose for themselves?What will happen to Karina if this decision stands by?Will there ever be a doctor who dares to act according to their conscience, or will they be fleeing from the patient in fear of the consequences?Does Karina have the right to choose less medicine and fewer side effects?She has been locked in for 3 years.Is she going to be locked in for 3 more years?It is well known that the type of psychiatric drug she receives may have significant side effects, so why should she be contained for years without the possibility of getting out of the medical strait jacket? "

    Frederica Avisen: Stig Gerdes: Min samvittighed er mere værd end titler
    Google translation: Stig Gerdes: My conscience is worth more than titles
     

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