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  1. Jonathan Edwards

    Letter from parents of children with ME to paediatricians in the UK

    I agree that parents have every right to be angry. What worries me is that this will have the opposite of the desired effect. It is not well argued and relies on flimsy evidence from weak citations. Criticism of PACE and adolescent studies is appropriate but to be convincing needs to be well...
  2. Jonathan Edwards

    Michael Sharpe skewered by @JohntheJack on Twitter

    'I agree that would likely make people worse.' An interesting statement here - of interest to NICE. Since we have no way of guaranteeing that psychotherapists are properly trained (a concern expressed to me by Simon Wessely) there is clearly no way of being sure that people will not be made...
  3. Jonathan Edwards

    Michael Sharpe skewered by @JohntheJack on Twitter

    'What a bizarre and offensive comment for a (long retired) medical academic to make about any colleague.' When a medical academic persistently makes offensive comments about their patients and refuses to accept that their work has fallen seriously below basic standards of methodology I cannot...
  4. Jonathan Edwards

    Michael Sharpe skewered by @JohntheJack on Twitter

    'Well a subset of scientists, mostly not experts in trials, at least some of who have pretty strong feelings about the findings. How many trial experts do you think find it a good trial - not perfect but good? ' I think having devised and executed many trials including one where I did both...
  5. Jonathan Edwards

    David Tuller: Trial By Error: BMJ Still "Looking Into" Lightning Process Paper

    I think it has been flagged up in such a way that the people who matter will make sure they educate themselves about the problems. One thing I think is clear is that the people at NICE involved with the guidelines are not going to drift through this without making sure they know what needs to be...
  6. Jonathan Edwards

    Michael Sharpe skewered by @JohntheJack on Twitter

    'Well. You are not going to be convinced I can see. Odd that folk want a trial to be retracted because they don't believe/like the results.' It seems extraordinary tome that Sharpe does not seem to understand that things have moved on in the last couple of years. Scores of senior academics...
  7. Jonathan Edwards

    Michael Sharpe skewered by @JohntheJack on Twitter

    The man is talking as if he understands nothing. There is nothing matched about two treatments that encourage people to think they are getting better and two protocols that encourage people to think they are going to stay the same. CBT and GET are deliberate placebos. The weird thing is that the...
  8. Jonathan Edwards

    Publications that show ME is biological

    I realised that my use of the term signalling might not be transparent. Nothing like dialogue to get on the same page. In 1992 I was working with Durval Campos-Costa and Peter Ell on nuclear medicine projects. The ME project seemed interesting but I guess was not considered convincing enough to...
  9. Jonathan Edwards

    Publications that show ME is biological

    The 2 day CPET seems to show that one vigorous exercise is followed by a dip in function a day or two later. But there are situations where this occurs in normal people. After repeated exercise the effect goes away and the muscle gets more powerful.
  10. Jonathan Edwards

    David Tuller: Trial By Error: BMJ Still "Looking Into" Lightning Process Paper

    I had not taken too much notice of the reference to the Lightning Process in the NICE scoping document. However, it does make clear just how close papers like this are to altering clinical practice. I have serious concerns about the SMILE study, greater than pretty much anything else, and I...
  11. Jonathan Edwards

    Publications that show ME is biological

    That's the sort of thing I mean by faulty signalling. Faulty signalling covers a huge range of things including immune responses, brain responses, autonomic responses, muscle mitochondrial responses - whatever you like. What is does not cover is structural damage or sheer lack of ATP or oxygen.
  12. Jonathan Edwards

    Publications that show ME is biological

    OK, so in a way this was a trick question, but in good faith. Various people, including Willy Weir and the MEA purple book interpret the deteriorated result on the second CPET as 'an objective demonstration of PEM'. I strongly suspect that van Ness and Keller tend to think something like that...
  13. Jonathan Edwards

    Publications that show ME is biological

    A quick question about your 2-day CPET @Hutan. Before the second CPET did you feel dreadful with PEM?
  14. Jonathan Edwards

    Publications that show ME is biological

    I think that is fair argument @Hutan. However, I think there are subtle differences between phobia desensitisation therapy and CBT. Phobia sensitisation is something that anyone is supposed to be able to do just by exposing the patient to their bogeyman. I did phobia therapy as a student with no...
  15. Jonathan Edwards

    Publications that show ME is biological

    In this case the thought would be a necessary part of the causal chain, which is all that matters in the general argument. I think the main point is that, no, we cannot conclude anything, because things are so complex.
  16. Jonathan Edwards

    Publications that show ME is biological

    I am deliberately being the devil's advocate here but I think it is important to do that because some people are I think making too simple an interpretation of these results. Whatever the problem is it is a biological reality but thoughts are biological realities too. Effects of thoughts are...
  17. Jonathan Edwards

    Publications that show ME is biological

    Actually, I think the relapsing/remitting aspect is in favour of a metastable state of a complex re-entrant signalling system - the main candidates being immune system and brain. Autoimmune diseases arise from faulty feedback in signalling cells that arises at random and can fluctuate wildly...
  18. Jonathan Edwards

    Publications that show ME is biological

    I think there is a reasonable chance that there is a key signal that could be corrected or blocked.
  19. Jonathan Edwards

    Webinar: Hot Areas in ME/CFS Research: 2018, Komaroff, 24 May 2018

    Thanks Sasha. I would not put too much weight on that. The study is from 20 years ago and apparently not confirmed by anyone else. The first measure is immune complexes. Measuring immune complexes was a bit like making magic potions - highly unpredictable and nobody quite knew what was actually...
  20. Jonathan Edwards

    Publications that show ME is biological

    I don't think it is as simple as that. Very fit people can develop unhelpful thoughts later on. My wife was a captain of a university swimming team in her youth. Later on she developed a psychotic illness with unhelpful thoughts such that she lost two stone and ended up on a drip feed. I am not...
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