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Petition against National Competence center for CFS/ME with BPS approach in Norway - anyone can sign

Discussion in 'Petitions' started by Kalliope, Aug 25, 2018.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    A letter to the editor signed 23 doctors/psychologists/psychiatrist objecting against the petition.

    Here's a (very quick) translation:

    Do we want the healthcare of the ME-bloggers?
    Are we going to let bloggers handpick doctors, set diagnosis and choose treatments?

    In the newspaper Bergens Tidende Nina E. Steinkopf goes to full war against the national competence service for CFS/ME. Her petition has got over 6 000 signatures, amongst other by the help of an international network of ME-activists and biomedical supporters that has probably never set foot in a Norwegian hospital.

    ME-patients have ten times higher activity on different internet forum than other patient groups and the opinions that are allowed are strictly regulated. Facebook, blogs and letters to the editor have therefore no premises for fact checks for the "click-here-rebels" going in protest parades on social media.

    The national competence service for CFS/ME keeps to its commission, rules and the guidelines to the Directorate of Health. If we're going to take patient activism seriously, we must throw away today's knowledge based practice and all existing research, and let bloggers handpick doctors, set diagnosis and choose treatments.

    The campaign is a petition for a one-sided biomedical approach. It started with a blogger's fight to keep undocumented treatment. This in support of a doctor who experimented with ME-patients with medicines patented by those who performed research on it, and which long and expensive multi senter study didn't show any effect on ME.

    In the real world ME-patients gets better, healthy and returns back to work. Patients who gets better, have followed the advice to the health authorities, been seeking broad rehabilitation or more psychological approaches.

    ME activists claim such approaches are directly harmful for themselves, and has an artificial division between ME and CFS. This despite that the triggering factors, symptoms, diagnostic criteria and diagnostic codes are the same, and no one can today prove any difference.

    Yes, we must listen to the patients because their understanding of their illnesses is crucial for improvement. Research and practise shows that patients with a more broad understanding of illness have bigger room for taking action and better prognosis than those with a pure biomedical understanding, which means is pointing to the cause as something physiological.

    We want to express our support to the National Competence service for CFS/ME, which as a broad put together expertise for children, adolescents and adults. They are securing research- and knowledge based services, and through annual conferences for health personell they secure wideness and quality on the health services.

    The campaign proves it has never before been more important to keep a national competence service for CFS/ME than now. Norwegian health services shall not be built down by bloggers and activists.

    As professional health care workers we want to thank the competence service who doesn't move when it's storming on social media, and who listens both to those who are ill and those who have recovered and who is able to see the whole patients.
     
    JaimeS, Cheshire, JohnM and 6 others like this.
  2. andypants

    andypants Senior Member (Voting Rights)

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    Hilarious, since it actually started because the competence center has a very one-sided psychosocial approach.
     
    JaimeS, rvallee, inox and 4 others like this.
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I think this will get uglier before it gets better. But for their own sake, as health care personell putting their name on something so vile towards patients - why not instead at least try to pretend you have the patients best interest in mind?

    Of course, it's better for us, when these attitudes and prejudice towards ME patients are so very clearly exposed.
     
    Tobedyl, rvallee, inox and 5 others like this.
  4. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Does the translation alter the sense of the quoted sentences?

    I don't understand what the open letter's authors are stating. Which blogger, which undocumented treatment, which doctor? And how would that relate to the petition which does not support any "undocumented treatment" but instead asks to apply better, evidence based standards?

    And which researchers do they mean? Which drugs were "patented" by which researchers? And again, how does this relate to the petition?

    Also, I don't understand why the open letter's authors refer to the distinction between ME and CFS.

    The petition doesn't say anything about that. Instead, it criticizes that the "National Advisory Unit on CFS/ME" does include "other conditions" in their diagnostic criteria. With respect to research the National Advisory Unit regards as investigating ME/CFS, the petition names as examples for other conditions wrongly included in the ME/CFS label "burnout, depression or overtraining in athletes". That isn't about distinguishing ME from CFS, is it?

    (I admit I haven't understood whether the "National Advisory Unit" and the "National Center of Excellence" are the same or in which way they are related. Assuming that this petition is meant; https://melivet.com/2018/08/25/petition-to-help-norwegian-me-patients/ and that that is a shorter version of this: ?
    The latter criticizes also to apply the label "Medical Unexplained Symtoms" to ME/CFS.)
     
    Last edited: Jan 23, 2019
    JaimeS, inox, Kalliope and 3 others like this.
  5. andypants

    andypants Senior Member (Voting Rights)

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    Spot on @MSEsperanza :)

    I think the patented treatment referred to is one that has been discussed here https://www.s4me.info/threads/paten...-of-chronic-fatigue-syndrome.4530/#post-81989

    The patent holders had a fb page where they promised all kinds of miraculous results, and some PwME bought it tried to petition for research grants to be made. Which is of course why the patent holders were promoting it in the first place, to lobby for research money. The optimism is probably misplaced, but I think this is something that happens in all patient groups and not a good reason to pick on very ill, desperate people. She's holding it up as an example of how PwME can't be trusted to recognize good science, basically.
     
    JaimeS, MSEsperanza and Andy like this.
  6. Marit @memhj

    Marit @memhj Established Member

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    You must be føkking kidding me.... :wtf::banghead: and :banghead::banghead: !!!

    There are not many ME-blogs left nowadays with so called "taliban-ish" content - my bad..

    "health care personell putting their name on something so vile towards patients" the blacklist.... its truly sad, but now PwME in Norway know for sure whoms will hurt you.

    I dont know, it must be wedensday...

    :emoji_scream_cat::emoji_pouting_cat:

    all this føkking stonewalling and :banghead:
     
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  7. inox

    inox Senior Member (Voting Rights)

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    Fluge and Mella also have a patent - and with the references to multi-center study, I think it's them they are implying? That other gang didn't even get passed REK... (ethical approval).

    http://www.freepatentsonline.com/y2011/0142836.html
    https://www.prohealth.com/library/f...ent-on-nitric-oxide-treatment-for-me-cfs-7422

    The ME-association have before made a statement in full support of the petition, hope they make that clear now.

    Also, setting up false narratives like this, is what the whole "ME-debate" is about over here :-/ Remember that study that Landmark likes to use, about how ME-patients supposedly is ten times more active online....?And how ME-forums supposedly are not diversive and open to discussion? The studies are real - but - non of them have studied those thing. /sigh :(
     
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  8. andypants

    andypants Senior Member (Voting Rights)

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    You're right, I overlooked the multi-center part. That study was legitimate and high quality science though, so it's weird to use that AGAINST the patients. But then the whole letter is absurd...
     
    Kalliope, inox, MSEsperanza and 2 others like this.
  9. Esther12

    Esther12 Senior Member (Voting Rights)

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  10. Marit @memhj

    Marit @memhj Established Member

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    Hi ;

    Its the translation!

    we have several National Advisory Units in Norway with the mainpurpose til increase knowledge ( https://helsedirektoratet.no/nasjon...asjonale-tjenester-i-spesialisthelsetjenesten )

    "A National Advisory Unit shall build up and disseminate competence to a defined target group
    within a defined subject area. The National Advisory Unit is a tool for raising the competence in
    a area where deficient competence and knowledge in health care personnel is documented.

    By ensuring national competence building and dissemination of competence within a specified
    subject area, the Advisory Unit actively contributes to the development of competence and
    guidance in the health service, to users and the general population.

    Some of the National Advisory Units include competence building on disciplines that are
    relevant to both the municipal health and care services and the specialist health service."

    Norwegian National Advisory Unit on CFS/ME and they never writes Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

    Other overlapps are:
    Nasjonal kompetansetjeneste for komplekse, alvorlige psykosomatiske tilstander hos barn og unge -> Norwegian National Advisory Unit on Complex Psychosomatic Disorders in Children and Youth (bad robots and aggresive pro-psykosomatic medicine, the BPS-squad) all kids suspested for ME have to)
    Hjemmeside: https://oslo-universitetssykehus.no...ykosomatiske-tilstander-hos-barn-og-unge-nkps

    Nasjonal kompetansetjeneste for pasienter med sammensatte lidelser
    Norwegian National Advisory Unit on Complex Symtom Disorders (St.Olavs Trondheim, Eigil Fors, Stiles among others -> pain is in the head...BPSfans)

    Hjemmeside: https://stolav.no/fag-og-forskning/kompetansetjenester-og-sentre/nasjonal-
    kompetansetjeneste-for-sammensatte-symptomlidelser

    Nasjonal kompetansetjeneste for funksjonelle mage-tarm sykdommer
    Norwegian National Advisory Unit on Functional Gastro-Intestinal Disorders Bergen/Haukeland (mostly good guys, impressive work. IBS - know-how'ers)



    ja....
     
  11. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    ("lege" seems = "physician")


    https://www.bt.no/btmeninger/debatt...oF8KSBCLoGQKUmZ4_Ul9Uv8tGH-FcPp-aTclpOLMdOPfw
     
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  12. rvallee

    rvallee Senior Member (Voting Rights)

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    Well, this will age very, very, very poorly.

    It's correct that patient activism should not be a factor in medical guidelines. But dismissing and contradicting patient input, creating a fictional alternative representation of a disease has made it necessary. The issues have been raised consistently and at every opportunity for the past several decades.

    This is obsessive and straight up bizarre. It feels dogmatic.
     
    Last edited: Jan 23, 2019
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  13. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Agree. It's surprisingly emotional, patronising and aggressive.
     
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  14. inox

    inox Senior Member (Voting Rights)

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    Says a list of signatories that are themselves supporters of the psychosomatic view of ME - or CFS/ME, as they like to call it.

    And by doing so just underlines the (documented) point made by patients - "The competence service chooses psychosomatic". Of course they are happy with the status quo.

    https://melivet.com/2018/09/27/kompetansetjenesten-velger-psykosomatikken/
    https://translate.google.com/transl...7/kompetansetjenesten-velger-psykosomatikken/
     
  15. andypants

    andypants Senior Member (Voting Rights)

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    I must say I'm very impressed with the Norwegian ME community as well. Everyone saves emotions and frustration for the discussions in the closed groups and keeps public comments factual and polite. It makes the aggressive tone of the letter even more absurd.

    I think this is one of the great things about the fb groups. It's so much easier for everyone to be kept up to speed with what is happening as it's happening, who says what and why, what is actually true, what are reasonable and unreasonable claims, etc. PwME in general are better educated on the issues, and have learned how damaging emotional outbursts can be in the current debate climate. I see a big difference in how these kinds of letters are met now versus a couple of years ago.
     
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  16. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Might be the reason why the letter names neither the researchers nor their trial(s) -- because the names are associated with high quality science.
     
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  17. Peter

    Peter Senior Member (Voting Rights)

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    What an embarrassing letter. And to co-sign? Wow.

    Its like there’s no capacity to come to terms with the fact that many patients are sick for a long time, many even deteriorating. Instead of wondering why, seek explanations, systemize and learn, the result is full cognitive shutdown. The principle of do no harm is dead, only politics aiming at preserving personal prestige.
     
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  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Interesting, it comes across as very lame and unprofessional.

    I suppose I am a supporter who HAS been inside a Norwegian hospital
     
  19. Cheshire

    Cheshire Moderator Staff Member

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    Wow, apart from the fact that this is pure speculation, this is hateful.

    In the real world like in all those service evaluations that barely show any improvment?

    This is very embarrassing. Such blatant anger against patients from "carers", disturbing really.
     
  20. andypants

    andypants Senior Member (Voting Rights)

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    Oh good, if not you would obviously be completely unqualified to say anything about healthcare.
     

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