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ME debate in Danish Parliament March 12 (2019)

Discussion in 'Advocacy Action Alerts' started by andypants, Feb 3, 2019.

  1. TiredSam

    TiredSam Moderator Staff Member

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    She got it wrong from the start, all she had to say was that there was no evidence for ME being a functional disorder. Then if Vogt wants to say there is and cite some papers, she can sit back and dismiss them for the rubbish they are.

    She seems to be feeding a pack of trolls and making it rather easy for them.
     
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The Danish newspaper for medical news - Dagens Medicin - writes today that Denmark's new minister of health, Magnus Heunicke, will follow the Parliament's decision on defining ME as a physiological illness - not psychological. Chairman for the Danish Medical Association, Andreas Rudkjøbing is not surprised, but critical. He says it's wrong that politicians all of a sudden start voting about an illness, and even went against the recommendations to the Medical Association and the Danish Health Authority. It's obvious that the treatments a patient should receive must come down to research and documentation. If it's instead down to popular trends and gut feelings, it will have consequences for patient safety. It is a dangerous slippery slope the politicians have started. He strongly urges them to let science rule from now on.

    Dagens Medicin: Sundhedsminister blåstempler kontroversiel beslutning fra foråret
    google translation: Health Minister confirms controversial decision from last spring
     
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  3. rvallee

    rvallee Senior Member (Voting Rights)

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    Oh, the irony.
    Yeah, let's try that. Doing the opposite of that has been catastrophic.
     
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  4. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    The DMA and DHA have a very special view of what constitutes science. There is zero (not hyperbole) scientifically validated evidence that ME is psychological. Zero. Not any. The only 'evidence' on the psychology ledger is for 'treatment' and not only is that evidence unsound (multiple methodological flaws, errors, manipulations, biases etc) it is treatment for a psychological illness for which there is no evidence.

    Yet there is some evidence of physiological abnormalities and the more we look there the more we find and validate.* It is very early days with regards to actual biological research -- having been hampered by the psychological paradigm there was no incentive to look. So it is still early to say how robust many findings are. But to ignore this is to be willfully aligned to an ideology.

    I know we all know this by now. I can't fathom how medical authorities don't recognise their bias toward something so utterly empty and without merit.

    *This causes me to consider -- is it possible to summarize the bio research that has been validated through careful replication? Do we have any?
     
  5. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Rasmus Handest, board member of the Danish Psychiatrist Association (Dansk Psykiatrisk Selskab) has written a letter-to-the-editor to Altinget, a newspaper covering political debates and the Danish Parliament where he criticises the Danish minister of Health for following the Parliament's decision on defining ME as a physiological illness.

    Psykiatrisk selskab: Forslag kan forringe behandling av kronisk træthedssyndrom
    google translation: Psychiatrist Association: Proposal may impair the treatment of chronic fatigue syndrome

    Many of the patients with ME / CFS benefit from being treated in already existing multidisciplinary specialized units for functional disorders.
    Unfortunately, there are also patients who do not get the better from this treatment. This also applies to countless other illnesses, such as epilepsy, osteoarthritis and diabetes. However, it is difficult to imagine that the politicians here would consider interfering with the disease classification.
    ...
    When politicians insist that ME / CFS should be moved out of functional disorders with a comment that they belong to this category, "when the doctor does not know what is wrong," you are greatly contributing to stigmatise patients with functional disorders, which is the opposite of the intention of the proposal.
    To see it as a step in the right direction, that the illness should be seen as a purely physical disorder, despite the absence of scientific evidence, is difficult to understand other than to prefer to have a physical illness rather than a mental disorder.
    This goes against many years of work on stigmatising mental illness and contributes to increasing the distinction between physical and mental disorder.
    ...
    One of the few effective therapies, cognitive therapy, requires a high degree of motivation for it to be effective. Incorrectly referring to this treatment as ineffective or phasing out the psychological component of the treatment can be fatal.
    ....
    There is no doubt about the good intentions behind the adopted proposal, which also contains good elements.
    However, the key misunderstandings make it important to state that ME / CFS is considered a real disorder, cognitive therapy and exercise in the form of graduated activity adaptation are effective treatments, and the disorder is understood and treated in the same way in Denmark and abroad.


     
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  6. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Except that PACE shows that nobody can possibly know that, even if we assume that there is a smidgin of efficacy rather than just bias.
     
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  7. Cheshire

    Cheshire Moderator Staff Member

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    The exact opposite could be said...

     
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  8. rvallee

    rvallee Senior Member (Voting Rights)

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    What a load of nonsense. Completely clueless and unable to tell reality apart from obvious pseudoscience. Arbitrarily interfering in the definition is exactly what these pseudoscience peddlers did and they broke everything in the process, accomplishing nothing but death and suffering. No matter how strong their beliefs, functional disorders are not a thing. Psychosomatic illness with a BRAND NEW label slapped onto the package does not change the complete lack of substance.

    It is sad that politicians have to set them right and force them to stop ignoring science but it has to be done, as they are clearly a lost cause.
     
  9. chrisb

    chrisb Senior Member (Voting Rights)

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    He must have been reading Wessely circa 1993.
     
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  10. rvallee

    rvallee Senior Member (Voting Rights)

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    He must have been reading Wessely circa 19931493.

    Same difference.
     
  11. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The Journal of the Danish Medical Association has an article today about Director General of the Danish Health Authority, Søren Brostrøm, giving a speech to FAS, the Danish Association of Medical Specialists. Brostrøm has been a fierce supporter of the PACE trial and of ME being defined as a functional disorder. In the speech he mentioned the ruling from the Danish Parliament to define ME as a physiological illness and says doctors can't reestablish a monopoly of authority, but that we live in a "polyfactual" society with competing authorities and advice doctors to reflect on the conditions of their authority.

    Another example of the "polyfactual" society according to Brostrøm where professionals are being run over, is the vaccine debate, particularly the debate surrounding the HPV vaccine.

    Ugeskriftet: Søren Brostrøm til FAS: "I har en kognitiv brist. I forstår ikke magten, og når I er klar til det, er det for sent"
    google translation: Søren Brostrøm to FAS: "You have a cognitive deficiency. You don't understand power, and when you're ready, It's too late

    The overall theme of the annual meeting was how the doctors deal with 'The new reality in health care' with the subtitle: 'The doctor's work under the influence of structure, culture and media'.

    A reality where most of it is up for discussion. Where some people make their own toothpaste because fluoride is considered dangerous. Where vaccines are considered as something dangerous, pseudoscience has victorious days on internet and - as in the example of the reclassification of ME (Myalgic encephalomyelitis) - where the experience in medical circles is that the professionalism is being over-run by the politicians.

    But Søren Brostrøm was not one who in a purely medical forum needed to vent his dissatisfaction with the defeat.

    Yes, he almost rejected the premise that this is 'a new reality'.

    'It was not the Parliament's fault. It is my fault and my responsibility - we have not done well enough in the government in providing the right decision-making basis, ”
     
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  12. Sean

    Sean Senior Member (Voting Rights)

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    That much is correct, just not in the way he thinks.
     
    Last edited: Oct 9, 2019
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  13. rvallee

    rvallee Senior Member (Voting Rights)

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    For which The Lancet, Richard Horton and Andrew Wakefield are responsible, behaving exactly the same way they did as with PACE. Not exactly a good idea to use that example but carry on regardless.

    Similar thinking to today's report about Eysenk's research being faulty, who promoted the belief that cancer is a personality type disease and whose work at KCL, home of Wessely, was published in medical journals and was pretty popular in academic circles for a while. His work is very similar to the typical BPS research published nowadays, not a single lesson learned.

    Especially galling coming from someone who arbitrarily miscategorizes a disease purely out of personal beliefs, redefining it to something that is completely different from what the patients are saying. Weak. This is not the kind of person who should be in any position of authority in medicine. What a jackass. Like House except only the bad attitude and contempt for patients but none of the talent.
     
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  14. TiredSam

    TiredSam Moderator Staff Member

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    Today one of my students helpfully told me that she had seen a documentary about aluminium in vaccines causing CFS. I politely said there were a lot of ideas about what might cause CFS, and that I didn't think a vaccine was the cause in my case, and thanked her.
     
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  15. TiredSam

    TiredSam Moderator Staff Member

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  16. mango

    mango Senior Member (Voting Rights)

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  17. rvallee

    rvallee Senior Member (Voting Rights)

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    So the National Board of Health is incompetent and ideologically guided? I'm no expert but that can't be good.

    Speaking of doing more harm than good...
     
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