The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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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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    I only know of this story from the media, but the parents to an ME-sick daughter were accused of poisoning her after she had an allergic reaction to antibiotics she had gotten from a clinic in Poland. For a period of time they were banned to see their daughter.
    There has been an investigation, and the police concludes there is no evidence of the parents being responsible after all. Can't imagine how horrible this must have been for the family. :(

    NRK: Ikke bevist at foreldre forgiftet datteren
    Google translation: Not proven that parents poisoned the daughter

    The assistance attorney says that the parents are terribly tired after the period of suspicion and a ban on visits. She does not think they can say they are completely done with the case yet because there are many things they want to get clarified closer.

    - It is about the role of the hospital, the role of the county governor and the role of the Norwegian Board of Health. They find that the daughter has been treated poorly at the hospital and that they as a family have received little help, little assistance and little insight.
     
    merylg, anni66, Joh and 6 others like this.
  2. Kalliope

    Kalliope Senior Member

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    From Norway
    The Consumer Ombudsman gives notice of inspection of marketing of alternative treatments. The Consumer Ombudsman has also updated their guidelines for advertising of alternative treatments.

    ME is mentioned among the diagnosis one cannot advertise treatments for.

    A letter with the new guidelines has been sent to approximately 90 organisations and practitioners within alternative medicine, including the LP-coach Live Landmark. This coach has done extensive marketing of LP towards doctors, medical students, politicians etc as a treatment for ME. Hopefully there'll be a decrease in the activity of this self-appointed ME-expert, so that actual research-news more easily can reach a wider audience.
     
  3. Cam Newton

    Cam Newton

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    Hopefully the CycloME study is released soon. Apparently, they finished the study in June or July and just need to write up the paper and publish it.
     
  4. mango

    mango Senior Member

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    Hvordan kan vi bruke PACE-studien?
    https://www.dagensmedisin.no/artikler/2017/09/09/hvordan-kan-vi-bruke-pace-studien/

    Google translate ("How can we use the PACE study?")
    https://translate.google.se/transla...hvordan-kan-vi-bruke-pace-studien/&edit-text=

     
    ballard, Jo Best, Lindberg and 12 others like this.
  5. Kalliope

    Kalliope Senior Member

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    A nice article today about Anette Gilje and her music.
    The article reveals that she will release a song in English on May 12th.
    ME-syke Anettes sang når flere

    google translate: The songs to ME-sick Anette reachers more people

    It is wonderful to see Anette Gilje's songs reach a wider audience. It is a great way to share some information about ME and she is a wonderful ambassador for our cause.

    Here is a YouTube-video from her release concert (in Norwegian)


     
    Invisible Woman, AndyPR and Jo Best like this.
  6. Jo Best

    Jo Best Senior Member

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    Letter to Finland's Valvira - CBT and GET: http://www.investinme.org/IIME-Newslet-1709-02.shtml
    [​IMG]

     
  7. Kalliope

    Kalliope Senior Member

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    One of the four research projects that recently got allocations from the Norwegian Research Council has created this Facebookpage for their trial - The Comeback Study - on fecal transplantation and ME. It has information about the trial and how to apply for those who want to participate. It will also be bringing updates on the progress. The information is in Norwegian, but it is possible to ask questions in English as comments.

    EDIT to add dr. Maureen Hanson mentioned this study during her talk at the recent ME-symposium at Stanford. As far as I understand she and The Quadram Institute in Norwich will be collaborating on The Comeback Study.
     
    Last edited: Sep 16, 2017
  8. Kalliope

    Kalliope Senior Member

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    A clever way to get around the Norwegian Consumer Ombudsman's new guidelines for alternative treatment, which included no more sharing of success-stories of undocumented treatments, was to get organised. By creating a network of recovered patients, the success-stories of alternative therapies can continue to be spread.

    This network was recently announced in a huge article in one of Norway's biggest newspaper together with a letter-to-the-editor and the Facebookgroup "Recovery Norway". The journalist seemed to miss that a lot of the people behind this initiative are LP-coaches or relatives.

    On Thursday, professor Ola Didrik Saugstad - a dear paediatrician who has debated ME for many years and is one of the few (perhaps the only one?) who has bothered to visit severe ME-patients and their families in their homes - wrote this letter-to-the-editor:

    Lytt til ME-pasientene!
    google translate: Listen to the ME-patients!

    For almost 10 years I have visited many of the most sickest ME patients in Norway and perhaps more than most people.Many people have a disease image consistent with a brain inflammation.And that is precisely what modern research now seems to reveal.

    It is the supporters that ME is psychogenic who constantly emphasizes the lack of knowledge. I think the Research Council's line of support for biomedical ME research is correct and in line with the American commitment to finding treatment for the disease.Psychosomatic research has not brought us closer to understanding ME and may have contributed to slowing down the trend for many years.
     
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  9. Kalliope

    Kalliope Senior Member

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    Dr. Georg Espolin Johnson has written a reply to professor Saugstad's letter-to-the-editor.

    Skjevt om ME og ME-behandling
    google translate: Wry about ME and ME treatment

    In a biopsychosocial disease model, Saugstad's distinction between treatment and coping becomes meaningless.

    A completely recent scientific article in the reputable journal Archives of Diseases in Childhood, published by the British Medical Journal publishing group, concludes that LP in combination with measures to improve sleep, as well as gradual increase in attendance at school, physical education and in social activities, was effective in the treatment of mild to moderate ME in adolescents.The article also denies that LP may be harmful.


    Also, professor Vegard Bruun Wyller wrote a reply in the paper edition of the same newspaper. It is not online, but here are some (hastily) translated pieces:

    - The fact that the immune system is activated by ME, does not mean that ME is an inflammatory condition. The immune system is also activated by depression, social stress and loneliness - does Saugstad mean that these also are inflammatory conditions?

    - The PACE-trial showed that CBT has positive effect on ME-patients. The study is criticised (as with all research) but the main conclusion is not proven wrong.

    - Professor Saugstad stages himself as an expert on ME, but has never performed research on ME himself. He is stuck in an old fashioned division between "body" and "soul" and is accompanied by a small but very loud group of ME patients who fights ferociously against "the soul" having anything to do with the matter.

    - I ask new patients, carers, health care workers and health politicians; do not listen to this pessimistic, misleading and outdated message. Instead listen to the majority of patients - many have recovered fully! - who makes use of modern and documented treatment methods.
     
    Last edited: Sep 26, 2017
    AndyPR, ivorin, Demepivo and 5 others like this.
  10. Solstice

    Solstice Senior Member

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    The old party-line. I wonder where they meet up to rehearse.
     
  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Mr Wyller seems to forget that it is he who is making the body and soul distinction with bio-psycho-social. We have heard it all before.
     
  12. Kalliope

    Kalliope Senior Member

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    A letter-to-the-editor today about the PACE-trial in a Swedish medical newspaper.

    Swedish: Dags att förkasta PACE-studien
    google translation: Time to reject the PACE study

    It discusses some of the problems with the PACE study and with the Cochrane Review based on among other PACE.

    I noticed that one of the authors to the Cochrane Review, Lillebeth Larun, has made a comment. She says that they are aware of the criticism, and have tried to answer them, but have bad experience with answering in open fora. Further she says that a new Cochrane review is due within a few months, this time based on individual patient data. The criticism will be taken into account in the upcoming publication.

    The medical newspaper tweeted the letter-to-the-editor about PACE, in case anyone wants to retweet/like/comment:
     
    Last edited: Sep 28, 2017
    ScottTriGuy, mango, Helen and 11 others like this.
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    It is going to be hard for Ms Larun and her co-authors to take into account criticism when the main concern of the research community is that they are not qualified to be writing this review in the first place. I am not surprised she has had bad experience with open fora. They are not restricted to cosy clubs involved in poor science.
     
  14. Kalliope

    Kalliope Senior Member

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    I listened to a lecture she held at a university hospital in Norway last year. She seemed genuinely interested in ME, but also completely convinced that the research absolutely proves CBT and GET are the best approaches.

    She is a physiotherapist and told the audience that as a young physiotherapist in the 1980's, she followed the guidelines and recommended parents to put their newborn babies to bed on their tummy. When this sleeping position later was linked to crib death, she felt so betrayed by the system, research and guidelines she had had such faith in, and decided to devote her life to analyse science in order to avoid being part of such mistakes ever again.

    I wonder when she will realise that she has repeated herself by not being enough critical.
     
  15. Esther12

    Esther12 Senior Member

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    Sounds bad that she thinks she will have her new review out in a couple of months.

    What bad experiences has she had in public debate? Being shown to be incapable?
     
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  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Yes, I heard this story. She does not seem to realise that if she is not intelligent enough to understand how to judge scientific evidence she is not the right person to do it. That might sound harsh but if you are not intelligent enough to fly a passenger aeroplane you do not get to do it either. Peoples' lives are at stake in both cases.
     
  17. Kalliope

    Kalliope Senior Member

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    One more answer to prof. Saugstad. This time from two neurologists (they actually work at the same university hospital as Fluge&Mella)

    ME er ikke en betennelse i hjernen
    google translation: ME is not an inflammation of the brain

    - .. he uses his medical authority to suppress persons with life experience associated with chronic fatigue syndrome / ME, who wish that this experience should be used by people with this illness.

    - It is a reality that many people with this type of illness have the opportunity to get better by their own efforts.
     
  18. Kalliope

    Kalliope Senior Member

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    A better translation to English of the letter-to-the-editor about the PACE-trial here
     
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  19. Helen

    Helen Senior Member

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    That tweet from the monthly journal for Swedish doctors, published by their own organization, was a very good read.
    " Time to reject the PACE study" . That will probably make a big change when it´s been out for a while . Thanks to the authors of the letter-to-the -editor who paved the way.
     
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  20. Kalliope

    Kalliope Senior Member

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    Last edited: Sep 29, 2017
    ballard, mango, Solstice and 3 others like this.

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