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  1. Jonathan Edwards

    Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

    But everyone that knows me knows that I do not get turned against people by patients and propaganda. I am a law unto myself. And if someone in high places happens not to know me they will not have to look far to find a man (or woman) that does.
  2. Jonathan Edwards

    CMRC - "Report of the fourth Annual Science Conference, 13/14th Sept 2017"

    The small picture. ME/CFS is now an interesting or even a hot topic to the science world. A CMRC/BACME consortium belongs to another era.
  3. Jonathan Edwards

    Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

    I absolutely agree. This open discussion forces one to consider and reconsider exactly what it is that is wrong. Dr Crawley cannot spin this discussion as concerted harassment because it is ordinary people expressing realistic and justified concerns. Moreover, she would have to explain why a...
  4. Jonathan Edwards

    Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

    It's the old Eric Morecambe and Andre Previn joke. 'All the right notes but not necessarily in the right order.' Having spent some time in the witness box being cross - examined I have learnt how elastic the term truth could be - if one were so inclined. But I think what you say is perfectly true.
  5. Jonathan Edwards

    "Fighting over fatigue", Interesting long read on ME by Mosaic, who are funded by Wellcome

    Yes, I think one would have to regard that as a co-ordinated attack. Edit: I see this was in relation to the Maddox prize. Intriguing to see that the supporters knew so much about Dr Wessely' fine work they even got his name wrong. Sir Ralph Kohn FRS of the Kohn Foundation, which contributed...
  6. Jonathan Edwards

    "Fighting over fatigue", Interesting long read on ME by Mosaic, who are funded by Wellcome

    'But Esther Crawley credits the collaborative for improving the relationship between patient groups and researchers. “You can question or debate, but no coordinated attacks,” she explains. And because of its ability to secure external funding, everyone sees it as worthwhile to work together.' I...
  7. Jonathan Edwards

    "Fighting over fatigue", Interesting long read on ME by Mosaic, who are funded by Wellcome

    I do not remember reading this, despite being quoted in it several times. It is quite interesting to see how things stood at the end of 2015.
  8. Jonathan Edwards

    Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

    The statement is obviously perfectly true. The primary outcome measure change was made, and reported, and then some results were collected. Some had already been collected - they must have been if there was a change in measure because the children did not like the first one. Doctors become...
  9. Jonathan Edwards

    New Crawley research? MOrPH-CFS

    Dear @petrichor, I appreciate that this is an entirely reasonable view if you have not scrutinised the proposal. The resources to do the work properly were not there. Moreover, with the SMILE trial we now see what happens when researchers start out without everything in place and then try to...
  10. Jonathan Edwards

    UK ME/CFS Biobank New Year's Newsletter 2018

    Everyone takes a nap from time to time @Esther12. Even me.;)
  11. Jonathan Edwards

    James Coyne - A sudden reversal of fortune for the biopsychosocial model of illness

    I think James has been helpful but I also think this is a point that should not be overlooked. James has a subheading 'the Americans have moved on'. Jen talks of differences across the pond. I think this is unhelpful. There are at least as big problems in the US as in the UK for ME/CFS...
  12. Jonathan Edwards

    Who is Simon Wessely?

    So it seems. Having had to nurse my wife with mental illness for six months I can only conclude that Wessely has no interest in ill people, only in himself. He reminds me a bit of Marie Antoinette in fact. He also reminds me a bit of Lord Winston who very nearly made damn sure my wife and I had...
  13. Jonathan Edwards

    New Crawley research? MOrPH-CFS

    I doubt it. Esther Crawley has done biomedical researching the past. Ido notice this as a sudden change. The description given seems extremely naive. Works like 'virile' are pretty meaningless, for the sort of reasons you mention @NelliePledge. The viral DNA in a spoonful of saliva has precious...
  14. Jonathan Edwards

    Are objective outcomes of cognitive function possible?

    That is a very complicated question. As Art says you could measure ability at puzzles or maths tests. But that could be affected by motivation and belief. Art might have said half way through ' I am not going to do any more of this because last time I did I crashed for a week'. In rheumatoid...
  15. Jonathan Edwards

    Which vitamin D?

    Vitamin D supplementation is likely to be sensible for anyone not going outside a lot and may be helpful if there is an issue of osteopenia from inactivity. But a plan needs to be discussed with a doctor. Vitamin D is toxic in too large doses and very dangerous in the context of undiagnosed...
  16. Jonathan Edwards

    Most definitely not a recommendation. Webpage: Chronic Fatigue Syndrome Stem Cell Therapy

    Maybe Dr O is a Russian robot, or a robotic Russian. Not that I have anything against robots.
  17. Jonathan Edwards

    Format of NICE stakeholder meeting?

    It is a bit strange having no indication of what is going to happen just ten days before a meeting. I have not personally had any communication from them at all.
  18. Jonathan Edwards

    Esther Crawley gets 'commendation' at 2017 Maddox Prize awards.

    I have not seen this before from the inaugural award in 2012: Fang Shi-min, a freelance science journalist based in Beijing, was awarded the Prize for his bravery and determination in standing up to threats to his life to uncover clinics promoting unproven treatments, and to bring a wide public...
  19. Jonathan Edwards

    Format of NICE stakeholder meeting?

    My eyebrows normally look a bit like that.And my glasses are not much different. I gave up the moustache thirty years ago so maybe that would do it. Maybe one of these would make me look suitably inconspicuous.
  20. Jonathan Edwards

    Is COPE (Committee on Publication Ethics) fit for purpose?

    Absolutely. How were newspapers supposed to run investigative journalism if the could not put complaints on the social media of the past (newspapers). Was a letter to the Times an inappropriate form of communication? Social media make things open and honest and public. These organisations love...
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