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  1. 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?
  2. Jonathan Edwards

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

    Presumably that is what you get with technical analysis.
  3. 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...
  4. 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...
  5. 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...
  6. 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?
  7. 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...
  8. Jonathan Edwards

    Aripiprazole - Abilify

    Not an easy one to answer. There are some intelligent people working in closely related fields who might see the value in testing something. After all Fluge and Mella weren't even in the field but were motivated. When IiME wanted to set up a rituximab study in the UK I organised a team who could...
  9. Jonathan Edwards

    Aripiprazole - Abilify

    Yes I agree. We learn. My original concern was not about posting experiences of this sort but more in terms of appearing to try to champion a drug in terms of comparing side effects with other drugs and so on. I suspect that people posting at the moment are just enthusiasts, but enthusiasm can...
  10. Jonathan Edwards

    Aripiprazole - Abilify

    That seems to miss the point. Vulnerable desperate people may be just the people to 'take the risk'. We have to consider the effects of our actions on everyone. That makes no sense to me. Posting anecdotes on forums is not a way to get treatments established - it has nothing to die with...
  11. Jonathan Edwards

    Aripiprazole - Abilify

    But vulnerable, sick, desperate people are not necessarily in a position to 'take into consideration'. And how would you find that out without a trial? But nobody is in a position to know. I am just expressing my opinion as a doctor and someone who has seen the harm that comes from...
  12. Jonathan Edwards

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    I wish I understood what sort of things go on in the heads of people like Garner.
  13. Jonathan Edwards

    Aripiprazole - Abilify

    No I said nothing about false or exaggerated stories. I was talking about constantly trying to argue the benefits rather than the downsides of an unproven therapy in a way that we can reasonably assume has a risk of inappropriately encouraging others. Certainly the insurance companies will look...
  14. Jonathan Edwards

    Aripiprazole - Abilify

    I think you may be missing something big. There has been a long term discussion about this issue and it started elsewhere - and it is probably the main reason why we are now on S4ME. Over a period of time it became clear that some people want to be able to make encouraging posts about...
  15. Jonathan Edwards

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

    You don't really learn about clinical evidence quality until postgrad training though.
  16. Jonathan Edwards

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

    This is a pretty shocking admission. We send out info to docs that isn't necessarily what our guidance says - just something dumbed down they can read quickly. And of course the message comes from a communication executive (just called Janet). So she wouldn't realise just what a howler she is...
  17. Jonathan Edwards

    Aripiprazole - Abilify

    I realise that people should be able to discuss drug options openly but I do have serious concerns about what is effectively gossip being spread on the forum. As you know, I introduced rituximab for non-haematologic autoimmune disease and had experience directly or indirectly with hundreds of...
  18. Jonathan Edwards

    A general thread on the PACE trial!

    I wouldn't worry too much about Dr McFarlane. He calls himself and independent psychiatrist and seems to have a bee in his bonnet about conflicts of interest. He doesn't understand methodology. I don't think he is going to be taken terribly seriously by anyone as I suspect he has rubbed everyone...
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