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News from Scandinavia

Discussion in 'General ME/CFS News' started by Kalliope, Nov 2, 2017.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    ---

    Sent: Friday 9 November 2018 14:35
    To: cureme@me-cfs.se
    Subject: Swedish reporter is preliminary interested in PACE trial



    Dear Sirs,

    In Sweden we had extensive reporting of the the surgeon Paolo Macchiarini and his fraudulent research, which led to his and others fall. SVT made several investigative television programs where the fraud of Paolo Macchiarini was exposed. SVT is the public television broadcaster of Sweden. A sort of the counterpart of BBC.

    https://www.theguardian.com/science/2017/sep/01/paolo-macchiarini-scientist-surgeon-rise-and-fall

    https://www.bbc.com/news/magazine-37311038

    Now, a medical reporter/journalist of SVT says she is interested in the PACE trial for maybe the future. She can be contacted via PGP encrypted email if wanted she says. Testimonies of persons with insight in the PACE trial might be interesting for her to read. Her contact details are below.

    Yours Sincerely, Kasper



    Josefin Lennen Merckx
    Medicinreporter
    SVT Nyheter Rapport & Aktuellt

    phone +46708847056 connection 47308
    josefin.lennen-merckx@svt.se
     
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Oh, this is VERY exciting. The Paolo Macchiarini-scandal surfaced only thanks to a documentary sent on national television in Sweden. Those who had alerted of the scandal before the documentary were very badly treated. Macchiarini published in the Lancet and was protected by the establishment because of his celebrity-status as surgeon. I've been in contact with the journalist who made the documentary regarding the PACE-trial, but it was not the right time for him to take on a new project. It's super exciting if SVT would like to do something similar with PACE.

    I am tagging you @dave30th Perhaps you could take a detour to our neighbours in Sweden before/after your upcoming visit to Norway?
     
  3. Helen

    Helen Senior Member (Voting Rights)

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  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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    This is from September, but just discovered it.

    The Danish doctor Stig Gerdes who stood up for severe ME patient Karina Hansen who had been sectioned by Per Fink, has now reported the director of the Danish Health Authority for neglecting the health of young women. The complaints are sent to Danish Patient Safety Authority and are about the HPV vaccine and the diagnosis "functional disorders". Stig Gerdes has also reported the Research Center for functional disorders at Aarhus University hospital. Stig Gerdes says there are lots of documentation that patients with "functional disorders" suffer from something particular and points to among other ME.
    Stig Gerdes lost his authorisation after the Karina Hansen case.

    Fyens Stiftstidende - Stig Gerdes anmelder direktør: Han har satt utallige unge kvinders liv og førlighed på spil
    google translation: Stig Gerdes reports director: He has put numerous young women's lives and health at stake
     
  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The Norwegian ME Association has today had a meeting with state secretary Anne Grethe Erlandsen from the Ministry of Health and Care Services.

    This is what they say in their Facebook post:
    The Norwegian ME Association has today visited state secretary Anne Grethe Erlandsen from the Ministry of Health and Care Services. We talked about clinical pathway, the ME Association's report on rehabilitation and the problem with governmental staff as GPs or people from the Norwegian Labour and Welfare Administration recommending alternative treatments.

     
  6. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The chairman of The Norwegian ME Association has written a letter-to-the-editor to a newspaper about the situation for ME patients in Norway where he urges prime minister Erna Solberg to do more for the patients.

    He gives some historical background and update about recent developments in research, including the criticism against the research behind GET/CBT as treatments. He talks about Fluge/Mella's research and finds it incredible that the government has suggested to from now on stop the previous annual allocation to their work. He urges politicians to keep supporting the researchers. He also points to the need for a proper CFS/ME competence service which works for ME-patients and not patients with fatigue.

    Følg opp ME-løftene du ga, Erna
    google translate: keep the promises you made, Erna
     
    MEMarge, ladycatlover, Inara and 8 others like this.
  7. inox

    inox Senior Member (Voting Rights)

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    Good letter :thumbup:

    The title is a reference to a speak Erna made on may 12th in 2015, when she opened an art exhibition by ME-pastients:

    https://www.microsofttranslator.com...-jeg-lager-kunst-pa-de-gode-dagene-1.12357129
     
  8. benji

    benji Established Member (Voting Rights)

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    LP coach Live Landmark looks forward to have a lecture on the researcher seminar (not the open day for patients and others, where David Tuller will be speaking, but the research seminar itself).

     
    ladycatlover, Hutan, inox and 6 others like this.
  9. Kalliope

    Kalliope Senior Member (Voting Rights)

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    WTF?
     
  10. andypants

    andypants Senior Member (Voting Rights)

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    :grumpy::facepalm::bored:
     
  11. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Just tagging @dave30th in.
     
    ladycatlover, Cheshire, Atle and 4 others like this.
  12. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    She doesn't even have any sort of scientific background.. How can she possibly be qualified to give a lecture at the research seminar?

    Also isn't LP officially recognised as alternative medicine in Norway?

    Bizarre

    Granted I would rather have some LP wacko at a conference than some of the CBT / GET proponents like Fink. At least those who advocate for LP are honest about their ideas of ME/CFS, which should make it painfully obvious for everyone how out of touch with reality they are. Whereas someone like Fink is so dishonest that it can be harder to see through his smokescreen of lies and deceit.
     
    Last edited: Nov 17, 2018
  13. Peter

    Peter Senior Member (Voting Rights)

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    Contact person at FHI/Norwegian institute of public health is Kristine Løvås Jacobsen. She’s done the master:

    DNA methylation and microRNA-mediated regulation of gene expression in adolescent Chronic Fatigue Syndrome

    Supervisor: Vegard Bruun Wyller..

    The sales agent and promoter of LP, closely Linked to Landmark. Not to forget that FHI itself has very little knowledge of ME and easily are misled by this LP BS. So nothing is new, little has improved last 6-7 years.
     
  14. inox

    inox Senior Member (Voting Rights)

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    I'm sorry to say that I'm not surprised - sad, but not surprised :( It's really hard to explaine just how ingrained LP have become in the medical profession in Norway. Landmark have been working on getting in this position for years, and very good at it. LP is generally not considered "alternative treatment", but as an actual therapy with similar to CBT - only more effective.

    Also - Lillebeth Larun and the norwegian cochrane group are situated at the FHI. Might give people a better idea of the deeply held biases that made the exercise review possible.


    And - Vegard Bruun Wyller have stated (in the norwegian journal for doctors):

    https://www.microsofttranslator.com...mentar/ukritisk-medieopptreden-av-me-forskere



    And - one of the organizers are "the national competence service for CFS/ME" The leader is Helland, and she said among other things this about LP when the SMILE study was publishsed:

    https://www.microsofttranslator.com.../09/21/-dette-er-veldig-spennende-resultater/



    Even if the NAFKAM (Norway's National Research Center in Complementary and Alternative Medicine) has stated that LP is alternative treatment, that really haven't changed much.

    http://www.microsofttranslator.com/bv.aspx?from=&to=en&refd=www.bing.com&rr=DC&a=http://www.nifab.no/behandlingsformer/lightning_process


    [edit: fixed quotes]
     
  15. Esther12

    Esther12 Senior Member (Voting Rights)

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    MEMarge, ladycatlover, Amw66 and 5 others like this.
  16. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Family and friends of ME patients have written an open letter to the Minister of Health urging him to help them get back their loved ones. Some of those who have signed the letter are celebrities (actor, musician).
    The letter gives good information and background story for the unbearable situation for ME patients and how impossible CBT/GET are as treatments. It also contains a good summary of current biomedical research.

    This was very heartening to see and a super support for ME patients :thumbup:

    It is neglect not to focus on the biology of ME. We need to increase research, test new treatments and ease the suffering. Vi need a center for research and treatment studying different kinds of phenotypes and testing treatments that has shown some effect on subgroups as well as accommodate for individual treatment courses. We need the most recent kinds of tools for assessment, and an ME-center that systematically updates their knowledge and is in contact with international researchers. There is acute need for adapted rehabilitation, ambulant service and support for the carers. Last year 30 million NOK were allocated to ME. This is a start, but nowhere near enough. In this year's government budget, the path-breaking studies from Haukeland are cancelled. This is a serious matter. There is a lot to catch up on after decades of unproductive focus and lack of research on a physiological understanding of the disease.

    Åpent brev til Bent Høie
    google translate: Open letter to Bent Høie
     
    Stuart, Inara, Hutan and 13 others like this.
  17. inox

    inox Senior Member (Voting Rights)

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    :heart:

    Also signed by three specialist in psychology and a couple of professors.

    Most of all, deeply touched by several non-patients fronting these issues and putting their name to the cause. That's just amazing. People have avoided getting involved, to not have their name connected to "the ME-debate".
     
    Stuart, Inara, Hutan and 10 others like this.
  18. Peter

    Peter Senior Member (Voting Rights)

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    That is a great letter, capturing the essentials. Should be an easy informative read for people not familiar with this insane mess. Well done and thanks.

    It's been absolutely impossible for doctors with knowledge and patients to get through to the ones responsible, get them awake and alert. It's a shame, but I do think we need «famous» people engaging. Should be very unnecessary but really says it all. The situation is totally unacceptable in 2018, moving an inch here and there, mostly just empty words.
     
  19. Kalliope

    Kalliope Senior Member (Voting Rights)

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    A mother to a daughter with severe ME has written a letter-to-the-editor directed to the Prime Minister and Minister of Health. She describes her family's meeting with the health care system and asks for more knowledge about ME and more funds for research.

    Kjære Statsminister Erna Solberg og Helseminister Bent Høie
    google translation: Dear Prime Minister Erna Solberg and Minister of Health Bent Høie

    You who are in positions to make an influence so our daughter and other ME patients will get help and maybe one day recover, must do what you can to correct the mistakes and lack of knowledge that is so obvious, both in our municipality and generally in municipalities and health care. You are in great power and can lift these patients by putting ME on the agenda. Grand words is of little help if it does not include real action. The ME case requires both higher levels of knowledge and a lot of funding for research.
     
    Stuart, Inara, petrichor and 11 others like this.
  20. andypants

    andypants Senior Member (Voting Rights)

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    Mella and the carer of a PwME presented research update and personal experiences about living with ME for the Norwegian Parliament today, during a seminar on women’s health.

    It was organized by the Labour Party (opposition), but let’s hope this might put the research at Haukeland back on the budget (it has been cut by the ruling parties).
     
    Stuart, MEMarge, Lisa108 and 14 others like this.

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