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  1. spinoza577

    Pathogens associated with triggering ME/CFS - discussion thread

    @JES thank you. I might need to beg your pardon. The approach doesn´t require the pathogens to be present, maybe they are virulent, maybe they are under control, or maybe they only left their footprint. In my case, I indeed have been tested positive for borrelia after I had begun an...
  2. spinoza577

    Pathogens associated with triggering ME/CFS - discussion thread

    This is an important question, I would say. I had begun to investigate, for now I am not going to put the tiny bit of literature, leaving it for later when I will have cleared up my situation. But the tiny bit what I had on the cards is this, by memory: Causing high manganese levels in the...
  3. spinoza577

    DNA methylation and BDNF expression account for symptoms and widespread hyperalgesia in patients with CFS and Fibromyalgia, 2020, Polli et al

    I think the finding may be interpreted as to that the plasticity in the brain (or some brain regions) is elevated. This may in any sense match up with Naviaux´s finding of diminished sphingolipids, probably in some regions the actions are shut down, and in other regions highly elevated...
  4. spinoza577

    A rating scale for fibromyalgia and chronic fatigue syndrome (the FibroFatigue scale), 2002, Zachrisson et al

    As opposed to my case, where I was not much limited in moving around, but had unpleasant pain. This may also say a lot about the nature of the disease. But if one doesn´t ask adroitly and ignores basic facts, one will miss the subject.
  5. spinoza577

    Changes in the Epigenetic Landscape of ME/CFS Reflect Systemic Dysfunctions; Helliwell, Thesis 2019, paper 2020

    Great. Thank you for finding. There have been already quite some studies on epigenetics as well. I think epigenetical changes could be not forced but helped: under good circumstances. There is also an acetylation of genes (as well of proteins).
  6. spinoza577

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I have two more important article in this context here. Nacul et al 2018 How have selection bias adn disease misclassification undermined the validity of myalgic encephalomyelitis/chronic fatique syndrome (ME/CFS) studies? Jason et al 2015 Problems in Defining Post-Exertional Malaise It is...
  7. spinoza577

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Disagreeing here. There is nothing to exclude from an assessment: You cannot read it, but you can smell it - the paper is badly written, looking somehow intelligent with a lot of knowledge, making "only" observations, but there is no recurrence throughout the pages. It´s scattered and then...
  8. spinoza577

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    @Hilda Bastian Some other articles which may be worth a read: Bransfield and Friedman, 2019: Differentiating Psychosomatic, Somatopsychic, Multisystem Illness and Medical Uncertainty Hu and Baines, 2018: Recent insights into 3 underrecognized conditions. Myalgic encephalomyelitis-chronic...
  9. spinoza577

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    (Good post.) Generally, "interpretating" sensations is a complex concept. Which sensations in my soul pop up I have no influence on: If there are sensations in my eye, I may interpret them and say "This is a car." And logically this makes sense, as it may explain why such a perception can be...
  10. spinoza577

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    it should be a long tradition. Maybe anybody can tell me where psychiatry is located, as it doesn´t seem to be psychology nor neurology? Or is it a technical issue, like neurology for degenerative diseases, and psychiatry for functional diseases in the brain? At least this were understandable...
  11. spinoza577

    Patterns of daytime physical activity in patients with chronic fatigue syndrome, 2020, Chalder, Sharpe, White et al

    In my understanding one should well elevate central sensitation this way, at least this should be the possibility when central sensitation is too strong, I would mathematically guess.
  12. spinoza577

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    In the PACE trial paper: If you look at figure 2 (questionnaires scores over a year), you may wonder what the trial is about. You find "international CFS only", "London ME only" and "depressive disorder only". (Depression is also referenced at at page 834, btw, and again within their own...
  13. spinoza577

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    All in all it´s: We don´t have anything, so we take this (CBT and GET). For patients it can be a catastrophe, why not admit: "Sorry we don´t know?" (This is easily possible as most doctors are adroit enough, at least, in finding out if the patient tells the truth.)
  14. spinoza577

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    It won´t be retrospective cherry picking indeed when already at the begin the view is skewed. We had the point already, it´s following just only what is en vogue, here or there, without thinking. For ME/CFS there is not only no clear evidence, instead the situation is unclear all over. But...
  15. spinoza577

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    This is in fact what is happening in human societies, but this is also in fact what potentially put the truth aside, as it goes only how many ppl have the same opinion probably upon their own situation, without questioning their assumptions. What ever one is doing, one should ask oneself again...
  16. spinoza577

    Coronavirus - worldwide spread and control

    But the excess mortality seems to have gone down to normal in the UK nations (despite that covid-19 deaths have not that much, according to wikipedia): https://www.euromomo.eu/graphs-and-maps#map-of-z-scores In all participating countries together the excess mortality over the year might not...
  17. spinoza577

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Easy questions but complicate matter. I think even pain is thinkable to be able to be measured objectively. Only it is not established yet.
  18. spinoza577

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    E.g. blinding can not be maintained because of side effects of the treatment (so not strictly related to the mechanism of action in its efficiency) or wrong sample. This brings me to the point that the authors don´t seem to have any near idea of what they are investigating. The paper even comes...
  19. spinoza577

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Another thing is that the deconditioning theory, which GET relies on (explicitly in the PACE paper), does not apply well at all. If patients would not recover from say a virus infection and would somehow artificially prolong the symptoms, one would not expect to see symptoms like POTS or gut...
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