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  1. Jonathan Edwards

    13th Invest in ME Research International ME Conference - 1st June 2018

    Certainly for the people that matter in terms of having a chance of doing something useful for ME, I think IiME's comments are out of order. If the political landscape is moving on and a number of researchers are in London then it makes sense and is right for PWME for researchers to talk...
  2. Jonathan Edwards

    Analysis of data from 500k individuals in UK Biobank shows an inherited component to ME/CFS (Ponting blog)

    That was certainly true ten years ago. What I am not sure about is whether the technology is now so powerful that it would be relied on to pick up the disease gene in disequilibrium too. Simon may know. Chris will obviously know. Interesting point.
  3. Jonathan Edwards

    Analysis of data from 500k individuals in UK Biobank shows an inherited component to ME/CFS (Ponting blog)

    To a first approximation I think yes. But as indicated, there may be caveats.
  4. Jonathan Edwards

    Analysis of data from 500k individuals in UK Biobank shows an inherited component to ME/CFS (Ponting blog)

    I think that is an interesting question. Maybe Luis Nacul, (and others) who assessed patients for various criteria, could extract that information.
  5. Jonathan Edwards

    Analysis of data from 500k individuals in UK Biobank shows an inherited component to ME/CFS (Ponting blog)

    I was talking to Chris Ponting about this last week. Take inflammatory arthritis. It is three times as common in women as in men and has a genetic association with HLA-DR4. BUT hidden within that it runs out that there are two groups of diseases. One is rheumatoid arthritis, which links to DR4...
  6. Jonathan Edwards

    Analysis of data from 500k individuals in UK Biobank shows an inherited component to ME/CFS (Ponting blog)

    I think if an amino acid is not conserved across species for a very basic protein like prolyl hydroxylase it suggests that the amino acid is not crucial to the protein's function - perhaps an optional link in a chain that just contributes to framework structure. That would allow a nematode to...
  7. Jonathan Edwards

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Evidence for an autoimmune disease

    The review was accepted on January 7th. So it may now be out of date.
  8. Jonathan Edwards

    Analysis of data from 500k individuals in UK Biobank shows an inherited component to ME/CFS (Ponting blog)

    This is certainly very interesting. My first question is whether the genetic risk estimate and the link to the prolyl hydroxylase gene are the same in men and women. They will quite likely either be pretty much exactly the same or obviously different. I think that would tell us something very...
  9. Jonathan Edwards

    13th Invest in ME Research International ME Conference - 1st June 2018

    I think this is fair comment. I wish I could enlighten Trish but I am not in a position to do so beyond saying that there is nothing very new here. Things are changing for the better, more despite the political manoeuvring than because of it. It is a pity if people feel aggrieved and feel the...
  10. Jonathan Edwards

    Briefing paper for parliamentary debate.

    I agree, but Emma gets everything absolutely right in terms of emphasis. I actually think her presentation (which I have re-watched) is the best piece of advocacy I have seen in the five years I have been involved in this. She does not over-egg anything. She mentions objective findings which is...
  11. Jonathan Edwards

    Double-blinded placebo-controlled cross-over pilot trial of naltrexone to treat Gulf War Illness, 2018, Brewer et al

    I agree. It is so disappointing that editors agree to publish abstracts like this. This abstract fails to give the expected results of the study - the comparison of test and control outcomes. As such it should be rejected for publication. It is as simple as that.
  12. Jonathan Edwards

    Briefing paper for parliamentary debate.

    From what I saw, Emma was playing her cards exactly right because she had Chris Ponting alongside her saying that we don't know anything about the cause of ME and need to do research to find out.
  13. Jonathan Edwards

    Briefing paper for parliamentary debate.

    I actually think it is the exact opposite. The BPS people love it when patients go on about their illness being physical - this is precisely evidence of the 'unhelpful illness beliefs' that started the whole thing off. If patients take the position that they have no beliefs or opinions about...
  14. Jonathan Edwards

    Briefing paper for parliamentary debate.

    I am afraid I agree with Esther12 that this sort of sentence walks right into the trap laid by the BPS people. It suggests that patients' views are driven by a desire to see their disease as legitimate rather than by science. Which allows the BPS people to say - and the REAL science shows bla...
  15. Jonathan Edwards

    Michael Sharpe skewered by @JohntheJack on Twitter

    I agree, this is the key point. PACE showed the theoretical basis for these treatments was wrong (disability was not caused by illness beliefs). And prior studies were clearly inadequate - Wessely even says his study was not even a trial - just treating some patients!
  16. Jonathan Edwards

    NHS: The Improving Access to Psychological Therapies Manual, June 2018

    A nice demonstration of just how transparent the bullshit is (to mix metaphors) when you see how they chat about it. Not only should the student know the non-facts but they should be able to draw on this knowledge. Presumably that means deciding that it was the perfectionism that caused Mary's...
  17. Jonathan Edwards

    Psychiatry – the medical speciality that combines empathy and science

    https://www.theguardian.com/politics/2018/jun/09/suffering-from-brexit-anxiety-you-could-get-free-counselling There getting into politics with a loss leader now. Free brainwashing sessions.
  18. Jonathan Edwards

    Psychiatry – the medical speciality that combines empathy and science

    And how do you empathise with someone about their irrational illness beliefs - do you have them too?
  19. Jonathan Edwards

    Psychiatry – the medical speciality that combines empathy and science

    Are you sure you are not being too charitable @Lucibee? What horrifies me about psychotherapy is that to a first approximation we do not even know if it ever does more good than harm. My limited experience of sitting in on three therapists' sessions is that they either were useless or harmful. I...
  20. Jonathan Edwards

    NHS: The Improving Access to Psychological Therapies Manual, June 2018

    It is so like homeopathy. There is a provision for every ill, with nothing in it.
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