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News from Scandinavia

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

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The assistent general secretary for the Norwegian ME Association has written a letter to the editor to a news site about medicine on how hard it can be to "get through" to doctors, particularly with conditions that mostly strikes women.
    She uses ME, fibromyalgia and endometriosis as examples.

    Opprørende om alvorlige sykdommer
    google translation Outrageous about serious illnesses

    I can accept that doctors make mistakes - it's human - or that they are not updated. No one can be up to date on all diseases, but I find it hard to accept an arrogance that explains everything you do not understand "as something that has occurred in the patient's head."

    How difficult is it to say: "I do not know why you're so ill, but I believe in you"? Why is it so difficult to accept patient's expertise on their own bodies?

    ...

    If ME patients are skeptical of further research on mental causes for ME, it is because they are far better updated on research than large parts of Norway's physicians. It is not where you will find the answers to what Ron Davis, who in his time led the Human Genome project, calls "the last major disease we know nothing about".
     
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Are you an ME patient living in Norway? Have you ever experienced that health care personell have recommended alternative treatments for ME? The Norwegian ME Association would like to hear about it.

    Når profesjonelle aktører utnytter et vakuum
    google translation: When professional parties takes advantage of a vacuum

    From today, we ask everyone who has experienced recommended alternative treatment to recover from a public body (Nav, hospital, permanent doctor, etc.) report to the ME association using the contact form on the right.

    The same applies to anyone who has heard recommendations from professional actors in meetings or at conferences, or have heard they speak warmly about using alternative treatment to get well. We can not have such actors in our health system (which is based on science and facts) when treating people. Concerns will be treated confidentially and anonymously, but the stories that appear will be handed over to the ministry.
     
    Marit @memhj, Inara, Joh and 7 others like this.
  3. andypants

    andypants Senior Member (Voting Rights)

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    I just filled it out. The neurologist I was sent to for a second opinion this spring, after prescribing migraine meds to try against headache attaches, ended the session by suggesting I try LP.

    The worst part is that she really had no idea what it was, she was pretty shocked when I explained what it consists of. And still she decided to recommend it, to a very ill young woman on benefits, to try an alternative treatment that costs thousands of pounds. It’s so incredibly irresponsible it makes me angry just thinking about it.
     
  4. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Wow can you make a complaint to your MP or the health minister??
     
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  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Remember Karina Hansen from Unrest? The Danish young ME-patient that was taken from her home and her family's care and institutionalised for years without her family being allowed to see her. There was 1 doctor who fought for her and he was portrayed as well in Unrest.

    He is called Stig Gerdes and has now reported Søren Brostrøm, the director of Danish Health Authority for, against better judgement, promoting functional disorders and HPV vaccines.

    The report is sent to senior doctor Charlotte Hjort, chief of Danish Patient Safety Authority and publicly announced on Facebook. He also requests that those who have experienced unworthy treatments in Danish health care should send a complaint to the Danish Patient Safety Authority.

    Regarding functional disorders he says among other (my translation):

    It surprises me that Søren Brostrøm, as board member of WHO, doesn't follow WHO's recommendations. WHO recognises Myalgic Encephalomyelitis as a somatic disease, with diagnostic code G93.3. WHO hasn't recognised Functional Disorders, thus Søren Brostrøm can't include ME under Functional Disorders.

    The full report is attached. Language: Danish
     

    Attached Files:

    Last edited: Sep 10, 2018
    MEMarge, Marit @memhj, Ravn and 12 others like this.
  6. Hutan

    Hutan Moderator Staff Member

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    So Stig Gerdes is criticising Søren Brostrøm for promoting HPV vaccination as well as functional disorders? If so, that seems an unfortunate pairing of issues. It makes it easy to criticise Stig Gerdes, and the rest of us who are against the BPS crowd, as 'anti-science'.
     
  7. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    This is a considerable problem in the Danish ME/CFS debate.

    An extraordinary amount of Danish ME/CFS patients are attributing their illness to vaccinations, and are very vocal anti-vaxxers.

    At the same time, the few doctors / scientists who speak out in public mostly all seem to be against the HPV vaccination.
     
    Last edited: Sep 11, 2018
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  8. Amw66

    Amw66 Senior Member (Voting Rights)

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    The Danes are reviewing HPV, more particularly Gardisil as there were some idiosyncrasies in Merck' s definition and handling of adverse reactions.
     
  9. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Yes, I'd prefer it too if those issues were kept separated. It seems the HPV vaccine debate has been particularly high in Denmark. Not sure of the reason.
     
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  10. Amw66

    Amw66 Senior Member (Voting Rights)

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    There seem to have been an unexpected number of severe adverse reactions noted in Denmark after Gardisil was initially rolled out. and someone has done a bit of digging as the reporting for these seems to have been designed to screen things out which may have been attributable.
    I don' t know much more than this. Some parents on forums are very interested as it squares with their own experiences.
     
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  11. andypants

    andypants Senior Member (Voting Rights)

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    Kavlifondet has decided to keep supporting ME-research at Haukeland, with an additional 4.72 mNOK, around $590k.


    KAVLIFONDET GIR 4,7 MILLIONER KRONER TIL ME-FORSKNING VED HAUKELAND UNIVERSITETSSYKEHUS

    Google Translate



    ETA: Link and Google translate
     
    Last edited: Sep 14, 2018
  12. Kalliope

    Kalliope Senior Member (Voting Rights)

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  13. Kalliope

    Kalliope Senior Member (Voting Rights)

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  14. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The Norwegian ME Association - Rogaland County - is about to launch their project on adapted education for children and adolescents with ME.

    The result is a "tool box" consisting of a lecture with PowerPoint presentation, four animation films and a booklet which will be presented at schools with pupils with ME.

    The main themes are
    • Information about ME
    • Cognitive challenges
    • Legal framework for adapted education
    • How to make a plan for the education
    • The ME patients and their relationship to fellow classmates and teachers
    Further presentation:
    Tilpasset undervisning for ME-syke - En god vei til sosial inkludering og bedret livskvalitet
    google translation Adapted Education for ME Patients

    fullsizeoutput_b10.jpeg
     
  15. Ravn

    Ravn Senior Member (Voting Rights)

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    Not about ME but parallels are not hard to find.

    The article is a highly entertaining account of assorted “medical opinion wars” throughout the last 200 years. Less entertaining and more disconcerting: many of our current debates – the diet wars, (anti-)vaccination, even BPS versus biomedical – appear to have their roots there.

    But at least I now understand the appeal of homeopathy. Back then, a few drops of water that may or may not have contained a “memory” of some molecule or other would have been infinitely preferable to treatment by high-dose mercury!

    Kampen mellem alternative behandlere og lægevidenskaben begyndte allerede i 1800-tallet (Danish)
    https://videnskab.dk/naturvidenskab...-og-laegevidenskaben-begyndte-allerede-i-1800
    The struggle between alternative therapists and medical science began in the 19th century (Google Translate)
    https://translate.google.com/translate?sl=da&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://videnskab.dk/naturvidenskab/kampen-mellem-alternative-behandlere-og-laegevidenskaben-begyndte-allerede-i-1800&edit-text=

    The bits about the supposed connection between morals and health are particularly interesting. You can expect good health if you live your life correctly with the correct food, the correct exercise and the correct morals. Illness, therefore, is a moral failing. Now, if you substitute “correct belief systems” for “correct morals” things start to sound awfully familiar.
    And check out the advertisement for the Skodsborg Badesanatorium for the “half-healthy” and those with "nervous disorders" and other MUS candidates. No idea what some of the weird-sounding treatments offered actually are but I'm somewhat suspicious that after an “electric bath” one might end up rather lass than half healthy :nailbiting:
    That last bit is an illustration in the Danish article, sadly it doesn't show in the Google translation.
    Edit: typo
     
    Last edited: Sep 16, 2018
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  16. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Here is a "trailer" from one of the animations that have been made for this project.
    It is in Norwegian, but here is a translation of what is being said.

    This looks like a normal class room situation. But for this pupil, the experience is completely different. You see, ME patients have a sensitivity for sensory impressions. It affects the learning capacity. Therefore it’s important to accommodate for quiet surroundings.

    Have you ever noticed that the pupil seems to be far away? That’s probably brain fog. Brain fog is a symptom which makes it very difficult to think and use the brain in a normal way.

     
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  17. Marit @memhj

    Marit @memhj Established Member

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    correct name
    the Norwegian National Advisory Unit on CFS/ME (Nasjonal kompetansetjeneste for CFS/ME)

    NOT
    Norwegian national center of excellence for CFS/ME or the Norwegian National Competence Services for CFS/ME
     
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  18. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I'm sorry. I used this page https://www.dinordbok.no/norsk-engelsk/?q=kompetansesenter
    But there might be a difference between "kompetansesenter" and "kompetansetjeneste"?
    Thanks for the correction. :thumbsup:
     
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  19. Ravn

    Ravn Senior Member (Voting Rights)

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    Article doesn't say much more than how nice it'll be for MUS patients on the island of Fyn to finally have their own Center to go to where they'll be understood. All very nice and caring but there's no indication whatsoever that anyone at the new center might take the biomedical side of things seriously. There's also mention of a similar center in Aarhus, stomping ground of you know who. Hmm. Suspect, highly suspect...

    Nyt center for uforklarlige sygdomme: Nu er der nogen, der tager dem alvorligt - Odense Universitetshospital har fået penge til at lave et center, der kan behandle 275 patienter om året.
    https://www.dr.dk/nyheder/regionale...domme-nu-er-der-nogen-der-tager-dem-alvorligt

    New Center for Inexplicable Diseases: Now, someone is taking them seriously - Odense University Hospital has got the money to make a center that can handle 275 patients a year.
    https://translate.google.com/transl...-der-nogen-der-tager-dem-alvorligt&edit-text=

    For entertainment, check out the Google Translate take on this link at the end of the article:

    [Original] Læs også: Av, av, av: Nu skal læger gøre noget ved skraldespands-diagnoser
    [Google] Read also: Off, off, off: Doctors now need to do something about binoculars diagnoses (this should read something like "Ouch, ouch, ouch: Now doctors are to do something about wastebasket diagnoses").

    Maybe Google is trying to tell us, in code, that doctors not prepared to use metaphorical binoculars to have a really good look at a patient's symptoms should take themselves off, off, off somewhere else, away from medicine?
     
  20. Kalliope

    Kalliope Senior Member (Voting Rights)

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    They are really mobilising in Scandinavia, aren't they?
    Did you see this in the Journal for the Swedish Medical Association?
    At least the author is honest on what this really is about..

    Funktionella somatiska symtom kräver biopsykosocial kompetens
    google translation: Functional somatic symptoms require biopsychosocial competence

    Many doctors recognize the situation in which a serious illness as a cause of the patient's symptoms has been ruled out, but it is still difficult to meet the patient's expectations of explanation or improvement.
     
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