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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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    Thought I'd start a thread with ME-related news from Scandinavia, for more general stuff which might be of interest for members at PR, but perhaps not "big" enough news separately for individual threads and discussions.

    Starting off with a good article today in the Swedish newspaper Göteborgs-posten about ME and the need for more knowledge and better care.

    A clinic for ME-patients, Gottfries-kliniken, has lost its support from local health authorities due to administering B-12 injections to ME-patients as it is not "documented" treatment for ME.

    "Det är som att vara fånge i sin egen kropp" (It is like being trapped in your own body)
    Link to Google translation
     
    Last edited: Jun 18, 2017
  2. Kalliope

    Kalliope Senior Member

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    From Norway: Upcoming workshop for doctors on how to deal with ME-patients.
    The organiser is a doctor well known for a psychosomatic view on ME. One of the themes in the workshop is how to take care of yourself and your role as a doctor when meeting ME-patients. In the description of the workshop a brand new term is introduced; "weariness-syndrome" (which google translated as ´tear injury syndrome´).

    Nothing on recent research and new knowledge about ME. :bang-head:

    About the workshop "Klinisk emnekurs om CFS/ME-pasienter"
    Google translation Clinical course on CFS/ME-patients
     
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  3. Kalliope

    Kalliope Senior Member

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    From April: Discussion about the PACE-trial at forskning.no (a Norwegian news site for research) The article is originally from the Danish sister-site Videnskab.dk

    The Danish researcher and doctor Andreas Schröder defends the PACE-trial whilst the Norwegian paediatrician Kristian Sommerfelt criticises it.

    Google translation Treatment of chronic fatigue is criticised

    There has been little discussion on the PACE-trial in the media in Norway. Hopefully more will come.
     
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  4. Kalliope

    Kalliope Senior Member

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    (Post also shared in the thread Calendar of ME/CFS - events)

    2 seminars in Sweden on ME for health care workers - some is in English. The organiser is the Swedish ME Association RME - Riksföreningen for ME-patienter.
    (I've translated the headline for the seminars and a few titles of speeches, so any incorrect English is my fault, not the organisers :whistle: )

    Fatigue even in the cell - a conference on ME
    (Utmattning ända in i cellen - en konferens om ME/CFS)

    18th October - Stockholm, Sweden
    - Anamalous microbiome and metabolic profiling in ME/CFS-patients - prof Maureen Hanson
    - ME/CFS and the immune system. Where are we now? - Jo Cambridge
    - Biomarkers for ME/CFS in the spinal fluid - prof. Jonas Bergquist
    (Biomarkörer för ME/CFS i cerebrospinalvätskan)
    - Neuroradiological studies on ME/CFS - Dr. Per Julin
    (Neuroradiologiska studier vid ME/CFS)

    Registration: http://rme.nu/sthlm-2017

    Fatigue even in the cell - a conference on ME
    (Utmattning ända in i cellen - en konferens om ME/CFS)

    19th October - Malmö, Sweden
    - Infectiontriggered autoimmunity by ME/CFS. An explanatory model - prof. em. Jonas Blomberg
    (Infektionsutlöst autoimmunitet vid ME/CFS. En förklaringsmodell)
    - Anamalous microbiome and metabolic profiling in ME/CFS-patients - prof Maureen Hanson
    - ME/CFS and the immune system. Where are we now? - Jo Cambridge
    - Activity capability and participation from people with ME/CFS - Ewa Wadhagen-Wedlund
    (Aktivitetsförmåga och delaktighet hos personer med ME/CFS)
    - Panel debate
    Registration: http://rme.nu/malmo-2017
     
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  5. Helen

    Helen Senior Member

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    Thanks, Kalliope for creating this thread. The article you mention about being prisoned in your own body was among the first I read in my daily paper this morning.

    I think the article is well written. Also there wasn´t a young healthy girl nicely lying down asleep on a picture. A more realistic photo of a woman looking more of exhausted and with sunglasses on, relating to her light sensitivity was published . Though, I´m afraid that some doctors would say that the article is only an advertisement for money to this private ME- clinic. We have heard that before.

    I´m also disappointed that only vitamin B12 supplementation is mentioned as a treatment. Today there should be more options for symptomatic help until we´ll get to know more from ongoing research. Anyway, the article was a good description of this unknown and neglected disease.
     
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  6. Kalliope

    Kalliope Senior Member

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    My impression is that good ME-articles are one the rise in Sweden. Looking forward to read more!
     
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  7. mango

    mango Senior Member

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    Great idea for a thread, @Kalliope! :)
    This is a distorted version of what really happened... What's written in the paper is a misrepresentation of the facts. B12 wasn't the main issue, it has been blown way out of proportion.

    The real problem here was, and still is, that most of the GPs in the region -- who are heavily into BPS, CBT/GET, MUS/MUPS/etc, not accepting ME/CFS as an organic/bodily diease -- refuse to accept responsibility for the patients and the biomedical treatments they have been prescribed at the specialist clinic/Gottfries. The patients are only allowed very few visits to the specialist clinic, and then they are sent back to their GPs who are supposed to follow the specialists' recommendations and continue the treatments.

    So, the point of concern in the statement from the IVO (the Health and Social Care Inspectorate) was the disagreement itself and the lack of coordination between the specialist clinic and the local healthcare centers. They did mention the weak evidence for B12 treatments, but that wasn't the main point at all.

    The politicians solved this problem the easy and cheap way: by not renewing the contract with the specialist clinic, Gottfries... :cry::mad:

    A new contract was meant to replace Gottfries. However, Gottfries made a bid for it and won. The politicians then responded by making up new (very weird!) interpretations of some of the words used in the specification, which means that four out of five doctors at the Gottfries clinic may no longer treat patients, because, despite being a doctor and also among Sweden's foremost experts on ME/CFS, they have "the wrong training".

    There's still an ongoing legal case about the contract, Gottfries are appealing the court decision.

    You can read more about the details in this thread:
    http://forums.phoenixrising.me/inde...tfries-to-be-replaced-with-bps-for-mus.40518/
     
  8. Kalliope

    Kalliope Senior Member

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    Linda Tannenbaum - topical as ever - visiting Gottfries in Sweden today
     
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  9. Kalliope

    Kalliope Senior Member

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    Cort Johnson discusses the latest research from professor Vegard Bruun Wyller. Prof. Wyller and his team believe ME is psychosomatic and Johnson describes him as "a Norwegian version of Simon Wessely".

    Prof Wyller's latest research however, explored gene expressions. The genes highlighted in ME-pasients featured a down-regulation of genes involved in B-cell differentiation.

    Johnson wonders if we are witnessing an evolution of an ME-researcher and if at some point researchers on both sides of the ME/CFS divide will someday meet in the middle.

    Unfortunately, I'm not so optimistic.

    The Research Council recently asked for applications for projects on ME. Prof. Wyller applied for funds for a trial on adolescents and Lightning Process (TM). :bang-head::bang-head: Yes, this happened in 2017.. :aghhh:

    The application was turned down, resulting in a lot of noise and complaints of all the power ME-patients have gotten :confused:

    I'm sorry to say I think there is a long way yet to go for Wyller and his compadres. :(

    EDIT: Also, Wyller has an ongoing trial on ME and music therapy (I had suppressed that..)
     
    Last edited: Jun 19, 2017
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  10. mango

    mango Senior Member

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    :( I agree with you, @Kalliope. I feel the same about the BPS researchers here in Sweden... I personally wouldn't trust any of their work or their interpretations of it, given their track record. I feel that the their supposedly "biomedical" research -- they are obviously still using the same underlying BPS model of the disease, so I wouldn't call it biomedical at all -- is simply a waste of precious money :(
     
  11. Kalliope

    Kalliope Senior Member

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    From Sweden on news site for doctors

    A senior lecturer, Sten Helmfrid, and a medical doctor, Johan Edsberg (both members of the Swedish ME Association - RME), criticise a chapter on ME in a book about medical controversies. At the same time they provide good, updated general knowledge on ME.

    Well done!

    Läkartidningen - Färgad bild av ME/CFS
    Google translation - Colored image of ME/CFS

    EDIT: The author criticised, Jörgen Malmquist, replies:

    Jag fästar stor vikt vid bekräftade biomedicinska fynd
    Google translation : I emphasise confirmed biomedical findings

    .. on which he concludes:
    The correct relationship is that I 1) attaches great importance to confirmed biomedical findings and that I 2) consider that many disease images must be interpreted within a comprehensive biopsychosocial conceptual framework.These two perceptions are neither ideological nor original, they are certainly shared by the vast majority of doctors, psychologists and others.
     
    Last edited: Jun 20, 2017
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  12. mango

    mango Senior Member

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  13. Kalliope

    Kalliope Senior Member

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    MEMum and Helen like this.
  14. Helen

    Helen Senior Member

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    Thank you @mango for posting this article. I think it was well written , although short. Also the list of authors is impressing as it contains so many patients with their names and even medical doctors.
     
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  15. Kalliope

    Kalliope Senior Member

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    ME-patient and former general secretary of the Norwegian ME Association, Anette Gilje, has released a beautiful music album. She has written the songs herself and performs herself on the album. The songs are short, concise and with a simple expression - suitable for ME-patients and others with cognitive difficulties and low listening capabilities. The songs are about different aspects of being sick. Wise, thought-provoking and moving.

    Here is her artist site, where you can listen to one of her songs for free - "Bare blanke ark"
    If you want to give her a thumbs up, this is her facebook page
     
    Last edited: Jun 22, 2017
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  16. Jo Best

    Jo Best Senior Member

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    mango and Kalliope like this.
  17. Kalliope

    Kalliope Senior Member

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    Norwegian Institute of Public Health has published a trial on the HPV-vaccination and ME. Prof. Vegard Bruun Wyller is one of the researchers.

    Folkehelseinstituttet: Fant ingen økt risiko for kronisk utmattelsessyndrom etter HPV-vaksinasjon
    Google translation: No increased risk of CFS after HPV vaccination
    Link to the study: HPV vaccination and risk of chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide register-based study from Norway


    Results of the study

    • Girls who have received one or more doses of HPV vaccine do not have a greater risk of chronic fatigue syndrome (CFS / ME) than girls who have not received such a vaccine.

    • The study also shows that CFS / ME in Norway has increased in the period 2009-2014. The data for this part of the study are taken from more than 800,000 children and adolescents aged 10-17 years. About two thirds (67%) of those diagnosed are girls. However, the increase is similar in both sexes, although diagnosis occurs more frequently in girls. The reason for the increase is unknown.
    On criteria:
    CFS/ME was defined as an in-or outpatient hospital visit with a discharge diagnosis coded as G93.3 in the NPR. The national guidelines on CFS/ME recommend using ICD-10 code G93.3 for CFS/ME, regardless of suspected cause, and that children and adolescents are diagnosed by a paediatrician in the specialized health care. Children and adolescents are usually diagnosed according to guidelines from the Norwegian Paediatric Association, which refer both to the Fukuda criteria and to a broader case definition, requiring 3 months of unexplained, disabling, chronic fatigue. A recent Norwegian study found that 73% of adolescents diagnosed with CFS/ME, were diagnosed according to the Fukuda criteria.
     
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  18. Manganus

    Manganus Senior Member

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    Canary islands
    Thank you, @Kalliope !
    Good thread! :)


    That's my impression too - from my sparse following of Swedish press.
     
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  19. NelliePledge

    NelliePledge plodder

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    thanks @Kalliope this is fascinating the guy seems a bit of a space cadet or is he actually being quite clever and just hedging his bets so that whatever way things go he is always in business
     
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  20. Kalliope

    Kalliope Senior Member

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    My impression is that he has jumped to conclusions before investigating. And I agree with @mango 's theory that adding a bit more bio into the biopsychosocial approach doesn't necessarily alter a psychosomatic foundation.
     
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