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  1. Jonathan Edwards

    Blog: "The patient voice: a biased or valuable source of information?"

    I disagree. In the context that the PhD student was meaning this is exactly what we want. I am pretty sure the student was forced to listen to some drivel put on by the department to illustrate the emotional story of someone cured by CBT. That ought to put anyone off, oughtn't it? What's more...
  2. Jonathan Edwards

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

    Where is Dr Who when we need him? Cochrane reports may need a Tardis to be read properly.
  3. Jonathan Edwards

    Blog: "The patient voice: a biased or valuable source of information?"

    We may have to face the fact that flagging things up doesn't achieve much these days. I won't go political but what's on the front pages in the UK seems to show that nobody takes a blind bit of notice of anything. But on the other hand the same forces (mostly internet) may mean that people...
  4. Jonathan Edwards

    Blog: "The patient voice: a biased or valuable source of information?"

    Er what. Caroline is a waste of money - sacrilege. I know you didn't mean it.
  5. Jonathan Edwards

    Article: Tissues, not blood, are where immune cells function

    Yeah, well, I agree with the title. Not sure that reactions in tissues is a gap in understanding. It was the stock in trade of proper immunology for decades - but maybe people have lost sight of that!
  6. Jonathan Edwards

    Blog: "The patient voice: a biased or valuable source of information?"

    One last vent. To put it another way, this is manipulative, self-righteous gossip.
  7. Jonathan Edwards

    Blog: "The patient voice: a biased or valuable source of information?"

    This is actually a complete fabrication. No clinical epidemiology lecture would teach that a patient's account of their illness was biased. That would make no sense. They would teach that using one patients account as evidence of a causal relation is likely to be biased. The guy recalling this...
  8. Jonathan Edwards

    Blog: "The patient voice: a biased or valuable source of information?"

    To me it is actually quite frightening that the Postgraduate Medical Journal has material like this now. The BPS party line has soaked in to everything. Just as it is frightening that NICE subcontracts to 'Clarity" to give the bullshit to GPs even if the ME/CFS committee got things right.
  9. Jonathan Edwards

    Blog: "The patient voice: a biased or valuable source of information?"

    The Blog is owned by a junior clinical academic working for NIHR (oh yes) who has a special interest in ethics and medicine. This is naive political correctness with bells on I'm afraid.
  10. Jonathan Edwards

    Blog: "The patient voice: a biased or valuable source of information?"

    So I think this actually gives the whole game away. Calling a PhD student biomedical can only come from a BPS freak. I rest my case.
  11. Jonathan Edwards

    Blog: "The patient voice: a biased or valuable source of information?"

    This is intriguing. It seems to highlight how easy it is for us to want our cake and eat it. I am pretty sure that the author in this opinion piece is a staunch BPS type mind. They think that there is too much talk of bias. Haven't we been banging on for years now about not enough talk of bias...
  12. Jonathan Edwards

    Blog: "The patient voice: a biased or valuable source of information?"

    Was that said. They were PhDs but if they had clinical epidemiology lectures they would probably be clinical Phds?
  13. Jonathan Edwards

    NICE Clinical Knowledge Summaries: Tiredness/Fatigue in adults (includes CFS).

    Presumably that is what you get with technical analysis.
  14. Jonathan Edwards

    Aripiprazole - Abilify

    While I also agree that it is good to hear experiences, as long as they are not pushing doubtful arguments, I don't actually agree with this. Surely we learn from trials. Sadly so far we have only learnt that things do not work but that is crucially important. We learnt that rituximab does not...
  15. Jonathan Edwards

    Aripiprazole - Abilify

    In some ways it is not particularly unusual. High profile departments are often not very good at doing trials. We did a limited open label study of rituximab in lupus at UCL in 2000 that suggested major efficacy. Formal trials were taken on by high profile lupus units with the result that for 20...
  16. Jonathan Edwards

    The effects of non-invasive vagus nerve stimulation on immune response and reported fatigue in patients with CFS, FM and RA, 2021, Traianos E et al

    It seems a waste of time without controls. Any change may either be due to passage of time or reporting bias. It would be quite odd if there was not improvement for both reasons. The immunology study looks very strange - stimulating with LPS - what for? They do not even tell us about more...
  17. Jonathan Edwards

    UK Long Covid Clinics

    Is it clear why they are offering this free? Have they run out of business during the lockdown I wonder?
  18. Jonathan Edwards

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

    Fauci is a very intelligent guy. I also think he is a compassionate man with a real sense of getting things right for people. In addition he does not have to bend what he says for anyone. The fact that he seems to be rethinking ME seems to me a rather important development. His opinion carries...
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