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A Swedish reporter is interested in reporting on the PACE Trial

Discussion in 'PsychoSocial ME/CFS News' started by Tom Kindlon, Nov 9, 2018.

  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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    This was posted also in the News From Scandinavia thread, but I think it's a good idea to have single thread for these news. So I'll share my reply from the Scandinavia thread here as well:

    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. rvallee

    rvallee Senior Member (Voting Rights)

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    Do we know if this is from legitimate journalists?

    As in we remember the debacle from De Monitor which is supposedly genuine journalism but then did not do any actual journalism. They were given plenty of info and disregarded everything that contradicted Sharpe.
     
    epipnoia, Barry, Inara and 6 others like this.
  4. inox

    inox Senior Member (Voting Rights)

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    It's hard to be sure how someone coming into this will percive this whole mess, and it's bad that we have to worry about that :( But from a bit of google'ing I think she is the real deal.

    For some reason I can't get google translate to work for SVT-links, but here is something she wrote after talking to women with endometriose:

    https://www.svt.se/nyheter/inrikes/kronika-ett-enormt-svek-mot-kvinnorna


    And this she wrote of ME february this year, it's an overview with just 4 main points, but still reads sympathetic. "4 questions: What you need to know about ME" Also mentions the WHO classification and ends with: "The US Health Agency National Institutes of Health has upgraded its prioritization of the disease and doubled its funding for the ME research"

    No psychobabble :)


    https://www.svt.se/nyheter/inrikes/allt-du-behover-veta-om-sjukdomen-me
     
    Last edited: Nov 9, 2018
    Clementine, Sly Saint, Barry and 8 others like this.
  5. NelliePledge

    NelliePledge Moderator Staff Member

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    Maybe @dave30th would have a chat with them to see if they seem genuine
     
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  6. dave30th

    dave30th Senior Member (Voting Rights)

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    so who do I write to exactly?
     
  7. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Josefin Lennen Merckx
    Medicinreporter
    SVT Nyheter Rapport & Aktuellt

    phone +46708847056 connection 47308
    josefin.lennen-merckx@svt.se
     
  8. andypants

    andypants Senior Member (Voting Rights)

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    The journalist,

     
    Barry likes this.
  9. NelliePledge

    NelliePledge Moderator Staff Member

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    :thumbup:
     
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  10. Clementine

    Clementine Established Member (Voting Rights)

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    She is a serious journalist. In February, she was talking about ME on a big TV channel and I e-mailed her and asked if she had heard of the PACE trial and gave her links to a couple of sources. She responded and thanked me and also wrote that a couple of other people had informed her about PACE after her talking about ME on the news. She wrote that she would look into PACE when she had the time.
     
    Indigophoton, Lisa108, Barry and 11 others like this.
  11. Obermann

    Obermann Established Member (Voting Rights)

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    I agree, she seems legitimate. She has written about ME/CFS on the web page of the National Swedish Television. She says that it is a neurological illness, that the name chronic fatigue syndrome is misleading, and that the National Institutes of Health has upgraded the priority for ME/CFS.

    https://www.svt.se/nyheter/inrikes/allt-du-behover-veta-om-sjukdomen-me
     
  12. Clementine

    Clementine Established Member (Voting Rights)

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    I downloaded a video from when she talked about ME on the national news i February. It doesn't have subtitles but she talked about name confusion and that Chronic Fatigue Syndrome (kroniskt tr├Âtthetssyndrom in Swedish) is a misleading name because there are so many other symptoms.

    She mentioned that ME is often mistaken for burnout (exhaustion syndrome, utmattningssyndrom in Swedish).

    She also mentioned that people with ME are very ill and therefore have a hard time being listened to and that patients are subjected to a lot of prejudice and that healthcare professionals often lack knowledge.

    I'm not able to translate more right now but over all, she did a much better job than most reporters have done in Sweden.

    Before her studio talk, they interviewed a patient (Emil Heiling) and doctor Anna Lindquist at Stora Sk├Ândal, which is (according to me) the best ME clinic in Stockholm.
     
    Indigophoton, Lisa108, Barry and 9 others like this.
  13. Manganus

    Manganus Established Member (Voting Rights)

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    I have not proof-read the Google translation (edit: some comments in brackets now added), but at least in its original, untranslated state, the piece is not too bad:



     
    Last edited: Nov 10, 2018

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