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News from Scandinavia

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

  1. Helen

    Helen Senior Member (Voting Rights)

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    @mango, thank you for informing us about what has happened in RME. I´m really sorry. I could never believe this would happen as RME for many years have had excellent annual conferences (video-recorded as many of you know) with world-renown speechers like Maureen Hansen, Jo Cambridge, Drs. Fluge and Mella, Kenny De Meirleir, David Bell, Dan Peterson, Tony Komaroff to name of few of they who lectured. How is it even possible to change the policy of RME with all these convincing representatives for the clearly biomedical stance?

    I suspect psychologists have altered the policy to claim the ME territory as theirs, as the psychatrists did in the UK, and as many of them tend to do in clearly physical diseases. Notable is that they mostly talk about CFS, not ME/CFS. I guess it´s a way to avoid criticizm when it comes into details about symptoms etcetera.

    @Clementine , I´m trying to find out what ME-clinic is considered having a (partly?) non-physical approach. I think it would be good to have it published here to make the discussion more transparent. I think it´s up to them to defend their work, and tell us that we are wrong- if we are. Thanks for your information.
     
    Last edited: May 5, 2019
    Anna H, MEMarge, ScottTriGuy and 13 others like this.
  2. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I remain completely confused by all this. Why would people switch their point of view to something so utterly against all patient interest. Especially at this time. It suggests that those who changed never had any deep grasp of the subject matter around ME.

    Is money somehow involved?
     
  3. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Thanks @Clementine

    No patient organisation should be saying things like that.
    The fact that an ethical committee approved something means nothing other than it may not be bad (if they had not approved it probably is bad). It might still be bad - patients are entitled to make up their own minds about it. And patient organisations are entirely at liberty to distance themselves from anything that looks bad to them. Ethical committee approval says nothing about scientific quality - as we have seen from the recent HRA report in the UK on PACE.

    And no way do members 'need to participate' in something they do not like the sound of. It seems extraordinary to me that any patient organisation should take such a paternalistic view. The whole point about the ethics of volunteering for research is that it is entirely optional.

    I presume that people on the board of the organisation have for some reason swallowed the idea that BPS informed research must be good for patients. That is no surprise because the do-gooder instinct is all pervasive. The only trouble is that do-gooding needs to be backed up by competent scientific methodology.

    This whole can of worms is so much bigger than I ever expected when I first got involved. But every day things are more out in the open. Sooner or later the Emperor's nether regions will be in full sight.
     
    Anna H, MEMarge, Hutan and 19 others like this.
  4. Ravn

    Ravn Senior Member (Voting Rights)

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    @mango :(:hug:

    On a lighter note: The parents of severely ill Marie Louise, Vibeke and Esben, are finalists in Denmark's Patient Award in the category Firebrand, for their ME activism. Public voting open until 31 May.

    I voted from outside Denmark and it seems my vote was counted. Vibeke and Esben's entry showed top left on the voting page for me (but check their names and the word ME-Foreningen feature in the description, in case the site presents the options randomly). If you wish to vote, first select "Stem på" and then select the bigger button "Stem".

    Google-translated entry from the voting page:
    ETA: Link: http://sundhedsparlamentet.dk/afstemninger.php?2018 (don't know why the link says 2018 when vote is in 2019)
    Note to self: stay off computer when crashed as likely to forget something important, like a link...:bag:
     
    Last edited: May 6, 2019
    Anna H, Lisa108, MEMarge and 15 others like this.
  5. Clementine

    Clementine Established Member (Voting Rights)

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    Exactly. This letter to members was sent after some blogposts very thoroughly described the problems with this study (https://translate.google.se/translate?sl=sv&tl=en&u=https://pacegranskaren.wordpress.com/2019/02/28/metodologiska-och-etiska-problem-i-en-svensk-beteendestudie-av-me-sjuka-del-5-sammanfattning/) The board of RME are aware of these blog posts but they apparently didn't like people discussing this study and sent the letter partly as a response to it.

    We don't know exactly why this is happening but it's like all the things that the ME community has learned from the BPS clique are suddenly gone. Like that ethical approval doesn't tell us anything about safety or methodological quality or that it's really important to not participate in studies with a study design that makes your alarm bells go off loudly.
     
    Last edited: May 6, 2019
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  6. Clementine

    Clementine Established Member (Voting Rights)

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    It's the Bragée clinic.
     
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  7. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Thanks @Ravn for the instructions it was ieasy to vote and they didn’t ask for email address ETA maybe a thread of its own to highlight to everyone they can help by voting??
     
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  8. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    It definitely means that those in charge have no understanding of ME/CFS or the BPS model of ME/CFS.

    What has happened recently though is that the BPS model has changed a lot. Especially in Scandinavia... Or well.. It has changed outwardly, inside it is still rotten to its core.

    CBT or GET are no longer ''cures'', and sometimes they are not even ''treatments''.

    In the case of CBT it is sold simply a way to help patients deal with psychological problems that they might have as a consequence of their ME/CFS.

    In the case of GET, it isn't really graded exercise anymore. It is simply about making sure that patients who have enough energy, use said energy to avoid becoming decondtioned.

    Of course the problem is... Why then.. Is the PACE trial still used as evidence as treatment for both? Why still use the Cochrane reviews, when the ''new'' CBT / GET isn't anything like that used in studies used to cite the efficiency of both treatments? And why are the treatments still de facto exactly the same?

    It's because those advocating for BPS like Fink and other Scandinavians are lying. They lie constantly. They know the treatment are still exactly the same, but they have managed to dress up the decaying corpse of false illness belief. Which has sadly been enough to convince sufficient people. It's also one of the crazy things about the BPS trail of thought that they have admitted to the importance of lying. ''People hate being told they have a mental illness, so instead we have to sugar coat it'' (This isn't an exact quote, but many of us have come across this sort of paternalistic approach to ME/CFS before). Now they seem to no longer feel like it is enough to lie to patients. They must also lie to policy makers, politicians and even people working in health-care. For the greater good!

    This is why I always say that someone like Fink is infinitely more dangerous than someone like Chalder. Because at least Chalder is somewhat honest. Whereas Fink is a gobbledygook chameleon. I suspect that this sort of BPS approach to ME/CFS is going to survive for long after a bio-marker has been found. Sadly.
     
    Last edited: May 6, 2019
  9. Ravn

    Ravn Senior Member (Voting Rights)

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    I don't think this has been posted yet, it's from March 2019: feature article on TV Syd, (Denmark).
    Top marks to article for describing impact of ME, and to Daniel the featured patient who comes across very well.

    Bottom marks for interviewing a doctor from the Functional Disorders Center in Aarhus who insists GET and CBT help and suggests you can think yourself more ill. The proof, allegedly, is the stories on Recovery Norge.

    https://www.tvsyd.dk/artikel/laegen-kaldte-daniels-sygdom-boernemishandling

    https://translate.google.com/transl...aegen-kaldte-daniels-sygdom-boernemishandling
     
  10. Kalliope

    Kalliope Senior Member (Voting Rights)

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    A brilliant letter to the editor in a local Norwegian newspaper. It's written by a nurse and ME-patient.

    Tønsberg blad: ME. Vi må faktisk snakke mer om det
    google translation: ME. We actually must talk more about it.

    Patients are distrusted, children have missed schooling and social relationships, parents are suspected of neglect since the children remain ill despite cognitive therapy (CBT). Alternative undocumented treatments have made patients sick and commercial operators are getting richer. The problem has spread within NAV's doors and the livelihoods affected. ME patients are "voted" as the patient group with the lowest quality of life of all diseases. We are the sickest of the sickest and we are totally neglected in the big picture.

    .......
    We want you doctors and all health professionals to receive training on ME.

    And we want more people (!) to want more public money for research.

    We want you who are healthy and learned to speak our case, there are enough patients who have exposed their worst and most vulnerable experiences in life in newspapers in the hope of change.

    When you receive us patients that you don't know what to do with, channel the frustration upwards in the system, not down on us.
     
    MSEsperanza, Hutan, Atle and 13 others like this.
  11. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Jonas Bergquist was in studio yesterday on Swedish television talking about ME research.
    Not able to give a recap in English now, but perhaps others can?

     
  12. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Actor Svein Tindberg read a moving text about ME on Sunday's MillionsMissing event in Oslo. He has written the text himself and dedicated it to his friend Frøydis. Gave me goose bumps!

     
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  13. rvallee

    rvallee Senior Member (Voting Rights)

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    Weird how every medical professional who falls ill to ME agrees that we were right all along and that what they were taught, if at all, is misleading and harmful.

    Must be a coincidence. Either that or we're some kind of wizards. Yes, must be that.
     
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  14. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Just vaguely recalled there were one ore more Norwegian ME researchers refering approvingly to the Lightning Process, and found this -- are there more examples?
     
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  15. Esther12

    Esther12 Senior Member (Voting Rights)

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    There's this from Helland:

    https://translate.google.com/transl...e-er-veldig-spennende-resultater/&prev=search

    Presumably Vogt's been promoting LP with anecdotes somewhere?
     
  16. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Maybe Norwegians have a thing about lights in the sky? I have always found them very sensible and sympathetic but we all have our demons it seems.
     
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  17. Kalliope

    Kalliope Senior Member (Voting Rights)

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    There are numerous examples. They come all the time and Lightning Process is even mentioned in a digital reference book for doctors in a section about treatments for ME.

    The latest approval is from today.
    There's been a debate in the newspaper Aftenposten lately and today MD Georg Espolin Johnson defends PACE and claims MD Henrik Vogts organisation (consisting mostly of people who claim to have recovered from ME by Lightning Process) is "documentation that patients have recovered by cognitive approach".

    Text with google translation
     
    Last edited: May 16, 2019
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  18. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Thank you @Kalliope and @Esther12

    Is @dave30th aware of this?
     
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  19. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I have no idea what's going on. Alternative treatments have been rather popular for a long time among the general public, but to see doctors and other health care personell embracing Lightning Process as ME treatment has been very surprising and disheartening. They are usually sensibly sceptical to undocumented treatments, yet a Lightning Process coach has been allowed to write regularly for a newspaper in medicine and for the journal for the Norwegian Medical Association as well as teaching med students and the Norwegian Labour and Welfare Administration about ME and her treatment for it. I would very much like to know who opened those doors for her.

    On a side note, our princess has gotten a new boyfriend. A shaman and healer from USA who is visiting the country in these days. He has claimed to be able to heal among other blood cancer. But of course, it doesn't work if the patient has given up. This and other claims have brought an intense debate about alternative treatment vs school medicine. Which is a good thing, but very strange to now see doctors strongly criticising alternative, undocumented treatments and the patient blaming these often entail. Where are these doctors in the ME debate? Where are they when patients alert that the undocumented alternative treatment Lightning Process has gotten access into Norwegian public health care and is being pushed on a patient group by their colleagues? Where are they when it matters?
     
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  20. Andy

    Andy Committee Member & Outreach

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