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Status of CFS/ME (2019) Brinth et al Danish Medical Journal (Ugeskriftet.dk)

Discussion in 'General ME/CFS News' started by Kalliope, Jun 10, 2019.

  1. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Moderator note: new thread with posts from here
    https://www.s4me.info/threads/news-from-scandinavia.647/page-34#post-175962



    Danish Medical Journal (Ugeskriftet.dk) has published an article about the status of CFS/ME. It's good to see references to Wilshire et al and Twisk et al, but the authors still suggests that a subset of ME-patients might benefit from GET. They also define ME as a functional disorder..

    The recommended treatment modalities for patients with ME / CFS have been centered on graded training and cognitive behavioral therapy. In recent years, the utility of the graded exercise in the treatment of ME / CFS has been questioned.This partly based on the increasing recognition of the metabolic disorders of ME / CFS, and partly based on a critical review of the clinical studies that lay the basis of these forms of treatment [24, 25].

    A key issue and basis for great disagreement with the approach to patients is whether we should "spare" or "push" them.We do not have a definitive answer, but suggest that much of the disagreement is based on the fact that a subset of this poorly-defined patient group will benefit from being "pushed" into graded training and cognitive therapy while at the other end of the spectrum will be patients who, at the cellular level, will be harmed by training and therefore must be "spared" [25, 26]. In both groups, symptomatic treatment can be attempted in close collaboration with the patient, where sleep problems, orthostatic intolerance, pain and other key symptoms can be handled carefully according to current guidelines.

    It is stated that there is currently no evidence-based treatment modalities aimed at the basic disease process in ME / CFS, as this is not known.


    Myalgisk encefalomyelitis eller kronisk træthedssyndrom
    google translation: Myalgic encephalomyelitis or chronic fatigue syndrome

    Summary:

    Louise Brinth, Henrik Nielsen, Kim Varming, Susanne E Boonen, AC Gonzalez Ebsen, Paula Fernández-Guerra, Anne Sophie Schou, Jesper Mehlsen, Niels Gregersen, Ivan Brandslund & Rikke Katrine Jentoft Olsen:

    Myalgic encephalomyelitis or chronic fatigue syndrome

    Ugeskr Læger 2019;181:V08180570

    In this review, we discuss the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), which is characterised by extreme mental and physical fatigue with associated symptoms of pain, disturbed sleep, cognitive and autonomic dysfunction, as well as post-exertional malaise. This condition is often preceded by an infection, severe physiological and/or psychological strain. Over the last decades, research has demonstrated mitochondrial, neuroendocrine, immunological, and metabolic perturbations in patients with ME/CFS, giving hope for the development of new biomarkers and new treatment modalities.


     
    Last edited by a moderator: Jun 12, 2019
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    They miss the crucial point that there is no fact of a subset that benefits from this and a subset that benefits from that. That is to say they do not understand basing treatment on reliable evidence. I strongly suspect that the authors see themselves as a 'multidisciplinary team'.

    What they really meant was 'We do not have any evidence, but suggest that much...
     
  3. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    Sadly it's a common misconception in the Scandinavian ME/CFS debate.

    There is no need to compromise. The burden of proof is on the authors of PACE. The study used the broadest criteria and couldn't even show reliable evidence of improvement among patients.

    It's time to make up with the idea that some patients can benefit from CBT and GET once and for all.
     
    adambeyoncelowe, Atle, Ravn and 6 others like this.
  4. rvallee

    rvallee Senior Member (Voting Rights)

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    Ah, yes, sure. In "recent years". The very recent time of... 30 years ago, aka from the start, since it's based on an alternative fictitious model that contradicts the lived experience of ME patients.

    The 19th century, yesterday, what's the difference? Why bother researching things?
     
  5. Amw66

    Amw66 Senior Member (Voting Rights)

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    Subsets would only be relevent if they could be identified pre exercise.

    It never ceases to amaze me that If the starting point is to " first do no harm" , if you cannot identify who will be harmed, how is any " treatment" ethical.
    This is not a bit of extra muscle ache!
     
  6. Sean

    Sean Senior Member (Voting Rights)

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    Especially the type of CBT and GET they are 'offering'.

    Exactly. If they can't predict responders from non-responders then they have no understanding at all, and are just taking random potshots and hoping something hits whatever target they think they are aiming at.
     
  7. Ravn

    Ravn Senior Member (Voting Rights)

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    In the Danish context this is actually an excellent piece. It gives a good overview of all the recent biomedical findings. Functional Disorders are primarily mentioned because that's where ME/CFS has been placed by the health authorities in Denmark; the article then lists all the counterarguments though it diplomatically stops short of a definite conclusion.

    The main issue with the article is with the treatment section where they suggest that a subgroup may benefit from GET whereas another subgroup may suffer harm. That statement is probably a result of misdiagnosis in Denmark. The authors mention that a 2017 survey showed 1% of the Danish population has a CFS diagnosis which is suspiciously high and makes me suspect that many patients in that group do not suffer from PEM - which is bound to lead to many doctors experiencing that their "CFS" patients improve with exercise (because they never had ME in the first place). The authors don't say that but they do conclude that other than general symptomatic treatments (sleep, pain, OI) there is no evidence-based treatment for ME/CFS; they don't push neither GET nor CBT. It's an opportunity missed though. They could at least have stated that the "subgroup" with PEM (out of the 1% with "CFS") should not be given GET.

    My impression is that (most of) the authors hold biomedical views but had to include a few off-notes due to the context around ME in Denmark - it is a review article - and possibly to be seen as sufficiently "balanced" to be published. Maybe. Speculating.
     
    Dolphin, Joh, Lisa108 and 10 others like this.
  8. Sean

    Sean Senior Member (Voting Rights)

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    One of the several steps in a typical back down by authorities is some version of:

    'Well, we were partly right.'
     
    NelliePledge, inox and andypants like this.
  9. Andy

    Andy Committee Member & Outreach

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    Merged thread

    Only abstract available at the moment.
    https://www.ncbi.nlm.nih.gov/pubmed/31267953
     
    Last edited by a moderator: Jul 4, 2019

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