1. Guest, to read the 'News in Brief' for the week beginning 30th March 2020 click here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

News from Scandinavia

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

  1. Peter

    Peter Senior Member (Voting Rights)

    Messages:
    168
    Likes Received:
    1,340
    When doctors practicing school medicine embrace and promotes LP, giving a da.. about documentation, not bothering the big risk of harming patients, one gets, let’s say, a little worried. What is next to come as a mismatched solution to almost everything? It wouldn’t surprise me if a couple of doctors, sooner than later, brings shamans in as the next big thing in school medicine. If LP deserves promotion, why not a tiny little bit of shamanism?:banghead:
     
  2. chrisb

    chrisb Senior Member (Voting Rights)

    Messages:
    2,412
    Likes Received:
    16,039
    That may be a subject needing to be treated with a degree of sensitivity. It may already have been tried.
     
    MSEsperanza and Andy like this.
  3. mango

    mango Senior Member (Voting Rights)

    Messages:
    653
    Likes Received:
    5,536
    On Monday 3 June there will be an interpellation/debate about ME in the Swedish parliament.

    Will probably be live streamed, recorded and available to watch here https://www.riksdagen.se/sv/webb-tv/

    https://www.riksdagen.se/sv/dokumen...motande-av-patienter-med-diagnosen-me_H610263
     
    ladycatlover, Joh, John Mac and 13 others like this.
  4. mango

    mango Senior Member (Voting Rights)

    Messages:
    653
    Likes Received:
    5,536
    Anna H, petrichor, Helen and 4 others like this.
  5. Andy

    Andy Committee Member & Outreach

    Messages:
    9,049
    Likes Received:
    65,695
    Location:
    Hampshire, UK
    MEMarge, Skycloud, petrichor and 2 others like this.
  6. mango

    mango Senior Member (Voting Rights)

    Messages:
    653
    Likes Received:
    5,536
    No, I'm too ill, unable to watch :( Haven't seen any comments yet about what was said either.
     
  7. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    2,693
    Likes Received:
    27,344
    Location:
    Norway
    Haven't seen it myself, but here's a summary


    Microsoft translation:
    In today's interpellation debate, Minister for Social Affairs blamed @lenahallengren a lack of consensus on diagnostic criteria for not setting up a centre of Excellence FOR ME/CFS. Bad excuse. The Canadian consensus criteria were highlighted in the SBU :s expert report and are used in the Stockholm Region.

    ETA: SBU = The Swedish Agency for Health Technology Assessment and Assessment of Social Services
     
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    4,267
    Likes Received:
    36,047
    Location:
    UK
    write up by Linda Tannenbaum on trip to Denmark
    (from an email)
     
  9. Andy

    Andy Committee Member & Outreach

    Messages:
    9,049
    Likes Received:
    65,695
    Location:
    Hampshire, UK
  10. mango

    mango Senior Member (Voting Rights)

    Messages:
    653
    Likes Received:
    5,536
    This blog post is about why it might be difficult but sometimes also very important to criticise "the good guys". It's well worth a read.

    It's relevant not only because of the Montoya news and how it is currently being talked about on social media etc, but also in relation to the situations that during the last few years keep sparking reoccurring conflicts in Swedish ME groups (which does more harm to the ME community: silencing justifiable criticism and continuously sweeping serious problems under the rug, or acknowledging the problems and talking openly about them?). Is this a big source of conflict in other countries too?

    https://mitteremitage.wordpress.com/2019/06/07/en-elefant-i-rummet/

    Google Translate, English ("An Elephant in the Room")

    (I'd say that's very "politely" put of the blogger... Sadly, people have been silenced, censored, bullied, ostracised and defamed etc, for expressing justifiable criticism.)
    Google Translate, English ("An Elephant in the Room")

     
    Last edited: Jun 8, 2019
    ladycatlover, Sean, Anna H and 7 others like this.
  11. Peter

    Peter Senior Member (Voting Rights)

    Messages:
    168
    Likes Received:
    1,340
    I agree with the view of the blogger and patient, but not sure how big of a problem this actually is? My opinion is that the climate for (constructive) criticism in all directions overall are quite good, also among “the good guys”. Could be wrong.

    In Norway there are no clinics, so that kind of solves itself in its peculiar unsatisfactory way. But there surely is room for a lot of improvement on a more general level. I imagine that every ME-patient in contact with the healthcare system have experienced at least one, often several episodes that objectively easily should be categorized as unacceptable.
     
  12. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    2,693
    Likes Received:
    27,344
    Location:
    Norway
    Danish Medical Journal (Ugeskriftet.dk) has published an article about the status of CFS/ME. It's good to see references to Wilshire et al and Twisk et al, but the authors still suggests that a subset of ME-patients might benefit from GET. They also define ME as a functional disorder..

    The recommended treatment modalities for patients with ME / CFS have been centered on graded training and cognitive behavioral therapy. In recent years, the utility of the graded exercise in the treatment of ME / CFS has been questioned.This partly based on the increasing recognition of the metabolic disorders of ME / CFS, and partly based on a critical review of the clinical studies that lay the basis of these forms of treatment [24, 25].

    A key issue and basis for great disagreement with the approach to patients is whether we should "spare" or "push" them.We do not have a definitive answer, but suggest that much of the disagreement is based on the fact that a subset of this poorly-defined patient group will benefit from being "pushed" into graded training and cognitive therapy while at the other end of the spectrum will be patients who, at the cellular level, will be harmed by training and therefore must be "spared" [25, 26]. In both groups, symptomatic treatment can be attempted in close collaboration with the patient, where sleep problems, orthostatic intolerance, pain and other key symptoms can be handled carefully according to current guidelines.

    It is stated that there is currently no evidence-based treatment modalities aimed at the basic disease process in ME / CFS, as this is not known.


    Myalgisk encefalomyelitis eller kronisk træthedssyndrom
    google translation: Myalgic encephalomyelitis or chronic fatigue syndrome

    Summary:

    Louise Brinth, Henrik Nielsen, Kim Varming, Susanne E Boonen, AC Gonzalez Ebsen, Paula Fernández-Guerra, Anne Sophie Schou, Jesper Mehlsen, Niels Gregersen, Ivan Brandslund & Rikke Katrine Jentoft Olsen:

    Myalgic encephalomyelitis or chronic fatigue syndrome

    Ugeskr Læger 2019;181:V08180570

    In this review, we discuss the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is characterised by extreme mental and physical fatigue with associated symptoms of pain, disturbed sleep, cognitive and autonomic dysfunction, as well as post-exertional malaise. This condition is often preceded by an infection, severe physiological and/or psychological strain. Over the last decades, research has demonstrated mitochondrial, neuroendocrine, immunological, and metabolic perturbations in patients with ME/CFS, giving hope for the development of new biomarkers and new treatment modalities.


     
  13. JohnTheJack

    JohnTheJack Moderator Staff Member

    Messages:
    3,382
    Likes Received:
    15,788
  14. mango

    mango Senior Member (Voting Rights)

    Messages:
    653
    Likes Received:
    5,536
    One of the authors, Mehlsen, has been invited by the Swedish patient organisation RME to give a talk on "Meeting ME/CFS patients in a clinical setting" at their public seminars this fall.

    Will he be talking about treatment recommendations? If so, will he be recommending GET, like this article of his does? Will he be talking about functional disorders? :(

    I wonder why RME choose Mehlsen, out of all the people on the planet, to give this particular talk. Why not one of the more experienced clinicians from one of the Swedish biomedical ME centers, for example? Why someone from another country, a country that has a completely different (arguably much more problematic) clinical approach to ME?

     
    Last edited: Jun 12, 2019
    ladycatlover, Hutan, Anna H and 5 others like this.
  15. inox

    inox Senior Member (Voting Rights)

    Messages:
    503
    Likes Received:
    4,479
    Location:
    Norway

    I didn't know Mehlsen, but googling him would suggest no need to worry to much?He was engagede in removing ME from functional disorders in Denmark. He is very clear in this statement at the danish ME association:
    https://me-foreningen.dk/om-me/informationsmateriale/

    Also, I didn't read the article as recommending GET, but initiating the idea that there are patients who should absolutly not do GET and are likely to be harmed.

    The same argument is beeing introduced here by various people. As a way to get the discusion moving foreward, and opening for seperating ME-patients from the muddle of CFS.

    edit: words - how do they work? some went missing, some extra :p
     
    Last edited: Jun 12, 2019
    Anna H, Andy, Esther12 and 3 others like this.
  16. mango

    mango Senior Member (Voting Rights)

    Messages:
    653
    Likes Received:
    5,536
    Thank you! I too googled Mehlsen earlier, but those links didn't show up in the search result for me. Instead, I got links to his paper with Per Fink et al The Danish study of Functional Disorders, among other things...

    Very helpful to get some insight from the perspective of Danish pwME and ME Foreningen, thank you :)
     
    ladycatlover, Hutan, Andy and 2 others like this.
  17. inox

    inox Senior Member (Voting Rights)

    Messages:
    503
    Likes Received:
    4,479
    Location:
    Norway
    Oh, and I didn't see that functional disorder paper - that would have worried me too! Don't understand why he is involved in that, but the things I'm finding seems good? He signed this for instance, appealing to the Netherlands:
    https://www.meaction.net/2018/07/20...ands-to-invest-in-biomedical-research-for-me/
     
    ladycatlover, Andy and mango like this.
  18. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    2,693
    Likes Received:
    27,344
    Location:
    Norway
    News article about a woman who just got compensation for developing ME after a shot with the flu vaccine Pandemrix.

    ABC Nyheter: Kvinne fikk ME etter Pandemrix-vaksine - saksøkte staten og vant
    google translation: Woman got ME after Pandemrix vaccine - sued the state and won

    Trude Schei from the Norwegian ME Association says in the article:

    - No matter which vaccine is involved, there is a risk of someone having a serious side effect. But in a societal perspective, the vaccination has great value because it provides protection that makes many very sick.

    - Therefore, it is a social responsibility to care for those who become ill by the vaccine. I find it very positive that those who have had a negative effect from the vaccine receive compensation, says Schei to ABC News.

    She thinks that taking care of those who have had serious side effects, along with research on why someone gets these side effects, will increase confidence in the health authorities and the vaccination program.
     
    ladycatlover, Hutan, rvallee and 4 others like this.
  19. Helen

    Helen Senior Member (Voting Rights)

    Messages:
    332
    Likes Received:
    1,498
    Last edited: Jun 13, 2019
  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    4,267
    Likes Received:
    36,047
    Location:
    UK
    don't know if this has already been posted
     

Share This Page