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  1. Jonathan Edwards

    A person-centred test of multidimensional perfectionism and health in people with chronic fatigue syndrome versus healthy controls, 2021, Sirois et al

    Haven't you ever tried to straighten out a bedspread, @dave30th ? First you have to pull it one way and then you have to pull it the other way and then you have to go back and pull it a bit more the first way and ....
  2. Jonathan Edwards

    Over which physiological abnormalities in ME/CFS is there a scientific consensus about?

    From my perspective a consensus is just when at a scientific meeting if you went round asking people if such and such a finding looked solid most would say yes. It has nothing to do with any specific number of studies. It has much more to do with convincing detail in a very few studies. If...
  3. Jonathan Edwards

    Over which physiological abnormalities in ME/CFS is there a scientific consensus about?

    I am not sure that there are any data on a decent population based cohort. Reports from people like Peter Rowe are hard to make anything of because they involve tertiary centre referral cohorts that are probably heavily influenced by presuppositions.
  4. Jonathan Edwards

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

    I wonder what exercise therapy is doing in 'psych advances'? Presumably there aren't too many actual psych advances.
  5. Jonathan Edwards

    Over which physiological abnormalities in ME/CFS is there a scientific consensus about?

    By consistent physiological abnormality I really just mean finding the same thing each time people look. So one study finding low NK numbers and normal function and another showing normal numbers and low function is no good. It is also no good if the findings don't look to be measuring the same...
  6. Jonathan Edwards

    Lightning Process study in Norway - Given Ethics Approval February 2022

    I think the ethics committee put it well and Gunderson missed the point. There is often likely to be allegiance or competing interest but then you have to make your methodology immune to that. Although the ethics committee seem to have missed several tricks I thin they got this one right. Fluge...
  7. Jonathan Edwards

    Over which physiological abnormalities in ME/CFS is there a scientific consensus about?

    I don't see a problem with the threshold. When the research community finds something solid consensus on that falls into place pretty automatically. Nothing in the ME field except perhaps the CPET stuff gets near the level needed. @Snow Leopard is the person who understands the CPET issues...
  8. Jonathan Edwards

    Over which physiological abnormalities in ME/CFS is there a scientific consensus about?

    Sadly I don't think anything has changed. The NK story looks dead now. The CPET story may start to hold up with further studies reported but I for one still find it quite hard to see clear evidence of a consistent physiological abnormality.
  9. Jonathan Edwards

    Europe: EUROMENE

    EUORMENE is an organisation set up by researchers - specifically by Derek Phoebe the UK epidemiologist. It is a collaboration between European ME researchers and got a COST Action grant about four years ago to study research needs and education. Various publications have resulted. EMERG was...
  10. Jonathan Edwards

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

    I don't think there are any good studies in that group either. I suspect he is referring to himself - being an exercise junkie. I rather suspect that like Garner he thinks n=1 is low quality evidence but n=me is top whack incontrovertible stuff.
  11. Jonathan Edwards

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

    I guess his vignette biography in the Lancet gives us some answers. I think we saw this before: A general practitioner for many years, Glasziou is especially interested in non-drug research (and is helping to create the Handbook of Non-Drug Interventions), which, due to its lack of commercial...
  12. Jonathan Edwards

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

    Yes but why was he acknowledged - what for? Why was he giving advice in this area or, as it says, providing 'additional information'. Why does Glasziou say we know exercise works - from clinical experience? Surely you only move from advisor to participant if you have some sort of finger in the pie?
  13. Jonathan Edwards

    Key Concepts for Informed Health Choices: a framework for helping people learn how to assess treatment claims and make informed choices.

    Chalmers: the Godfather Astrid Austvoll-Dahlgren: Norwegian Institute of Public Health Andrew Oxman: Tovey/Fretheim exchange Allen Nsangi: working with Oxman at Oslo Paul Glasziou: author on previous exercise review with Larun Loai Albarqouni: works with Glasziou - a successor to Hilda. David...
  14. Jonathan Edwards

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

    That is a fair point. Although I also agree with those who see use of Cochrane as often a sticky label on an existing view. I absolutely agree that a better group of authors would be desirable. Having a physio assessing whether a rag bag of exercise trials can justify employing a physio is...
  15. Jonathan Edwards

    Lightning Process study in Norway - Given Ethics Approval February 2022

    It is encouraging to read that so well put. I suppose the word 'controversial' is redundant!
  16. Jonathan Edwards

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

    Not quite either. I think we may have to accept under the circumstances that to have people who believe in therapies involved may get things further forward than not. A key point here is maybe that the right answer to the review - that the evidence is no good - has already been admitted by the...
  17. Jonathan Edwards

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

    Hilda has partly answered this herself. I think a proportion of the workforce involved would have been non-negotiable in practice. The real task here is to confront Cochrane on its own 'cognitive dissonance'. I think the way to do that is to mix all the disparate viewpoints, including one or two...
  18. Jonathan Edwards

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

    So what on earth has that to do with remarks about objectivity and cultural differences and all that stuff? I don't buy that as a response at all I am afraid. I would echo @InfiniteRubix 's echo of what I said. This is really serious legal stuff. I actually think that in the context of the...
  19. Jonathan Edwards

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

    This causes me serious concern @Hilda Bastian. What we need from the exercise review is the best possible judgment on whether or not a set of trials reflect some real beneficial effect specific to certain treatments. Whether or not they do have an effect is a matter of fact, even if very...
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