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  1. Jonathan Edwards

    A general thread on the PACE trial!

    The therapies and measures to be used are essentially the same as used in these successful trials. The psychology of that statement is very interesting. Scientists don't normally talk like that.
  2. Jonathan Edwards

    Guardian Article on NICE pause

    The only thing on which I would disagree is that most good science is done by mavericks working in isolation: Einstein Newton Leibniz Descartes Galileo Darwin Pasteur Lister Jenner Curie Crick and Watson ...
  3. Jonathan Edwards

    Guardian Article on NICE pause

    I wonder what the inspired mid-field pass from @Healthy_Control was?
  4. Jonathan Edwards

    Guardian Article on NICE pause

    That is a fairly incisive reply from Godwin. Sharpe may come to regret that tweet.
  5. Jonathan Edwards

    Guardian Article on NICE pause

    I fear it is a lack of common sense, which, as Bertrand Russell said, is not that common. The issues with these trials are easy for anyone on this site without scientific knowledge to follow. You just have to have some basic experience of how human beings behave and a bit of joined up thinking.
  6. Jonathan Edwards

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Only in the trivial sense that if you have no virus you cannot have a mutation.
  7. Jonathan Edwards

    Guardian Article on NICE pause

    I think it is simply that Grover wants to centre the piece around the idea of 'lived experience'. So anyone who stresses believing the patients must be on the right side.
  8. Jonathan Edwards

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    A vaccine can protect a population against infection - by reducing the likelihood of the virus being passed around.
  9. Jonathan Edwards

    Guardian Article on NICE pause

    What I think is clear from the print version is that the newspaper and its editor really couldn't care a damn what comes out as long as it fits onto the paper neatly. They are quite happy to have different accounts in different presentations. For all its hi-falutin' do-goodery mission...
  10. Jonathan Edwards

    Guardian Article on NICE pause

    As far as I can see they are getting involved as patients that happen to be doctors rather than as people with specific experience with trials. I am talking about doctors engaging with this purely as an issue of standards in clinical science.
  11. Jonathan Edwards

    Guardian Article on NICE pause

    The issue is clinical trial practice - which is something physicians (or other medical specialists) do. I am aware that scientists have contributed to the background knowledge base but is are scientists actually jumping up and down writing to the BMJ or taking to journalists or otherwise...
  12. Jonathan Edwards

    Guardian Article on NICE pause

    I agree but it must bit a bit puzzling that the voices of accepted best methodological practice (Royal Colleges) here are saying that CBT and GET are being unduly criticised. Where are the rows of academics defending good practice? There's me and Brian, and journalists, lawyers and...
  13. Jonathan Edwards

    Guardian Article on NICE pause

    Except that in this case I had spent the best part of an hour on the phone with Grover going through the arguments and counter-arguments. She specifically rang me to ask me to explain why the two sides differed so much.
  14. Jonathan Edwards

    Guardian Article on NICE pause

    Fluge and Mella produced pharmacodynamic profiles for each patient showing progress over time. Although we now know that the responses were spurious (placebo or expectation bias of whatever sort) you can see very clearly that some patients spiralled up to reporting feeling normal and others did...
  15. Jonathan Edwards

    Guardian Article on NICE pause

    I have emailed Grover with the relevant points. I think I had made them when we had a long telephone call about a week ago, but I realise it takes time for things to sink in and I cannot expect to be treated as Moses with the tablets.
  16. Jonathan Edwards

    Guardian Article on NICE pause

    I agree that the attempt at 'balance' betrays a lack of insight. However, I think it is quite good to see Sharpe quoted saying something that all doctors will know is just silly - that you believe the patients when they say they are better (but not when they say they are worse). The irony will...
  17. Jonathan Edwards

    Guardian Article on NICE pause

    https://www.theguardian.com/society/2021/aug/30/withdrawal-planned-guidance-me-leaves-patients-distraught Natalie Grover seems to be getting nearer to understanding the problem, even if still a little way away. Some reasonable quotes from me. Some from Sharpe and Chalder as well.
  18. Jonathan Edwards

    What we're not being told about ME - UnHerd (Tom Chivers)

    Tom Chivers seems contrite and OK, he was relaying the other side he had heard. But the way it was relayed was a bit slap dash I think. The quotes from me are about general principles of trial design and clearly opinion. There wasn't an issue about whether or not I was manipulating historical...
  19. Jonathan Edwards

    What we're not being told about ME - UnHerd (Tom Chivers)

    For some reason Chivers seems to think that NICE should be the target of his criticism. Yes, NICE have made life difficult this week but in the longer term they are the only people who seem to have reached a sensible viewpoint. Exactly the same thing happened with the O'Neill piece where the...
  20. Jonathan Edwards

    What we're not being told about ME - UnHerd (Tom Chivers)

    I think Tom Chivers is learning what it is like to be used by journalists. The boot is on the other foot. Most times I talk to journalists I know they will mess up and use arguments upside down without checking and focus entirely on their agenda. Tom is now seeing what it is like to be...
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