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  1. Jonathan Edwards

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    No, I think not. B12 has been used for decades as the panacea placebo and I would bet my shirt that is all it is. It is the perfect placebo - being a vitamin sounds healthy and natural and being an injection makes it powerful. Q10 is pretty similar. I can think of no plausible scientific reason...
  2. Jonathan Edwards

    Michael Sharpe skewered by @JohntheJack on Twitter

    As I understand it the PACE authors position is consistent on this. They did not recognise a specific 'disease' called ME and were not trying to study it. They were interested in chronic fatigue that was not explained by some other illness like MS. The Oxford criteria were designed to detect...
  3. Jonathan Edwards

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    I am not sure what big differences are being referred to. I have not seen anything that has stood up to replication well and am not actually aware of anything major from Komaroff. Is there a link to this?
  4. Jonathan Edwards

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    I think that is moot in practice. For an infectious disease like Lyme or hepatitis an appreciation of infectious cause is going to have a big impact on what is included as sensible advice.
  5. Jonathan Edwards

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    Perhaps the obvious choice is Stuart Watson who works with Julia Newton.
  6. Jonathan Edwards

    Michael Sharpe skewered by @JohntheJack on Twitter

    Yes, I think Edwards was a major influence on the construction of the Wessely-Chalder speculation. Edwards was de facto head of Medicine at UCL around 1982-4 because the official head bowed out of any administrative function. He worked on muscle physiology in the context of training. I think he...
  7. Jonathan Edwards

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    Tending to show is not enough, though. There are tens of thousands of papers tending to show this or that in any number of diseases and the great majority of them never turn out to mean anything useful. Peter Barry works in intensive care paediatrics. He will be used to sifting out the studies...
  8. Jonathan Edwards

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    I realise that the IOM framed things in this way. However, the truth is that we have nothing that provides firm evidence for a pathological mechanism in ME. I wait to hear about convincing evidence for this mechanism or that but so far there is nothing tangible. There really isn't. And the chair...
  9. Jonathan Edwards

    Michael Sharpe skewered by @JohntheJack on Twitter

    Agreed but if the fifth point is that they turn out not to be deconditioned despite ME then the first point is a bogus argument. And it is only the first point that would have made sense anyway!
  10. Jonathan Edwards

    Michael Sharpe skewered by @JohntheJack on Twitter

    It's in the original paper laying out the plan to use CBT: J R Coll Gen Pract. 1989 Jan;39(318):26-9. Management of chronic (post-viral) fatigue syndrome. Wessely S, David A, Butler S, Chalder T. The full text is free I am pretty sure. On page two he is giving reasons why it is a mistake to...
  11. Jonathan Edwards

    Michael Sharpe skewered by @JohntheJack on Twitter

    Well he jumped between two universes in a single paragraph in the 1989 paper, so he is pretty consistent. He was justifying something, I forget what. His first reason was the dangers of not exercising - causing deconditioning. And his fifth reason was that PWME are not deconditioned. He didn't...
  12. Jonathan Edwards

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    Yes @Suffolkres, I think there are some legal issues here, and rightly so. Even on my Bird Club Wiki site I am asked not to mention who else was present at a certain time and place. When people go to meetings they do not necessarily expect that to be put on the net. Certain people one can be...
  13. Jonathan Edwards

    Michael Sharpe skewered by @JohntheJack on Twitter

    Except of course that the Weasel himself said in 1989 that there is clear evidence that PWME are not deconditioned. Their muscles have been tested and they work fine (by Andrew Lloyd and Richard Edwards). So PWME do not need to exercise. Somebody seems to have forgotten this along the way!
  14. Jonathan Edwards

    Michael Sharpe skewered by @JohntheJack on Twitter

    Can the man be so stupid as to say this? Does he assume everyone else is stupid enough to take his word for it? The Dodo in the Pitt Rivers has more sense than this.
  15. Jonathan Edwards

    NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

    I don't think we should see 'NICE' as made up of people who want to do anyone down. I think the worst one can say of NICE is that they are bureaucrats who want an easy life sometimes. Even that may be unfair. Talking to Peter Barry and Mark Baker last week my impression is that they genuinely...
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