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  1. Jonathan Edwards

    Auto-inflammatory diseases – What can they tell us about ME/CFS?

    I had not noticed this thread. In general I agree with what has been said. However, it is a bit more complicated because 'auto inflammatory' tends to be used for diseases that at least sometimes feature inflammation but which are not known to be associated with a specific auto reactive antibody...
  2. Jonathan Edwards

    CDC gets list of forbidden words

    I hear that message very clearly, Trish. Men may get treated as flabby wimps but I am aware that for ME there is a significant sexist narrative.
  3. Jonathan Edwards

    The UK ME/CFS Biobank Christmas 2017 Appeal

    The total that has come in is I think around £11,000. Jack is hoping to get it up to £15,000. Not far off!
  4. Jonathan Edwards

    Which autoantibodies would you test for?

    Your question is very clear @Inara The answer is actually quite complicated but not too difficult to understand. The person who explained it best was a vet called David Bennett who had the nice touch of showing all his dog patients with the face blacked out for anonymity! To make use of a test...
  5. Jonathan Edwards

    Which autoantibodies would you test for?

    No, it does not in itself indicate anything strange because a similar proportion of normal people also have autoantibodies. Autoantibodies are not necessarily a sign of anything wrong.
  6. Jonathan Edwards

    CDC gets list of forbidden words

    Very kind of you Trish but I am the norm. Male dominated research on males simply does not exist at least in the UK. Far fewer resources have gone into prostate cancer than breast cancer. Far fewer into ankylosing spondylitis than lupus.
  7. Jonathan Edwards

    CDC gets list of forbidden words

    I am certainly not suggesting any banning. I just think that science-based and evidence-based and fetus are rather more useful terms than diversity. And Trump gets votes by waving words like diversity in front of his supporters. On the Guardian today someone is reported as having said how...
  8. Jonathan Edwards

    CDC gets list of forbidden words

    It is just that there is no reason to us the word 'diversity' in biomedical science because it is a term for a pseudoquantity that has no relevance other than to politics. I can well see diverse being used. But what is the 'diversity' of three white women a black man and a pussy cat? Is it...
  9. Jonathan Edwards

    CDC gets list of forbidden words

    Rubbish, @Valentijn, epidemiology has always included breakdown by gender and race. That is how we know that more men than women died in the great Spanish flu epidemic. This business of 'male dominated research' is loony. Most medical graduates in the UK are now female with a higher than...
  10. Jonathan Edwards

    CDC gets list of forbidden words

    I don't think diversity has any place in this sort of document. Diversity is a code word used by the left where the US right use 'poor' - both mean black. If you mean black say black. Diversity is used to manipulate situations just as much as right wing terms. I have never had a reason to use...
  11. Jonathan Edwards

    Clinical and cost-effectiveness of the Lightning Process ... for paediatric chronic fatigue syndrome, 2018, Crawley et al (Smile Trial)

    I remember way back thinking that maybe one should not make too much fuss about the 'feasibility study' since it would not produce data that could be manipulated for inappropriate conclusions. I also remember being puzzled that I had never heard about a full study going ahead when the results...
  12. Jonathan Edwards

    Which autoantibodies would you test for?

    Absolutely right. Antibody titres bear no relation to how well the thyroid is doing. The ones we measure are probably not even the ones involved in damaging the thyroid. They are just a useful indicator that the damage is autoimmune. It's a bit like weighing your shopping bag to see if you...
  13. Jonathan Edwards

    Tuller / Trial By Error: The Crawley Chronicles, Resumed

    I'm not sure the spelling is what matters. I think the suggestion was that someone was practising as in practising the piano rather than practising medicine. Maybe not quite up to speed yet.
  14. Jonathan Edwards

    Tuller / Trial By Error: The Crawley Chronicles, Resumed

    I think Charles still represents MEA on the CMRC but this may have been a smaller meeting. In fact it seems to have been so small that only Holgate and Crawley were there, bar some media people. Hopefully Charles will log in here soon enough. He said he was having a rest from social media but I...
  15. Jonathan Edwards

    Article, UK: "Is it time for our universities to fight back against profiteering publishers?"

    I think if individual Universities/Colleges ran their own publishing they would be motivated to police their own people's standards otherwise they would rapidly get a general reputation for being 'dodgy'. Institutions with good staff doing good work could afford to lay everything bare and still...
  16. Jonathan Edwards

    (not a recomm.) How to heal 'chronic fatigue'&CFS/ME/anything (with NLP)

    The sight of that woman would make me run a mile. She isn't even wearing a blue cardigan for Christ's sake.
  17. Jonathan Edwards

    Tuller / Trial By Error: The Crawley Chronicles, Resumed

    Charles Shepherd said to me yesterday that he has being having a bit of a rest from social media with the other place debacle. However, he is now aware of the move to S4ME and I suspect will surface again in a while.
  18. Jonathan Edwards

    NICE Guideline stakeholders workshop Jan 2018

    Good work. Hopefully we can get a ticket for the meeting although it sounds as if it may be heavily subscribed. If there is no room it looks as if patient interests are still going to be well represented, but it would be good to be directly involved.
  19. Jonathan Edwards

    Metabolic shift induced by systemic activation of T cells in PD-1-deficient mice perturbs brain monoamines & emotional behavior

    I doubt the result has anything particular to do with T cells. It shows that a large number of unregulated cells - most typically seen in cancer - eat up nutrients. People have observed cancer patients becoming cachectic for centuries. Many of these engineered mice have huge numbers of the...
  20. Jonathan Edwards

    Tuller / Trial By Error: The Crawley Chronicles, Resumed

    David knows the meaning of due diligence. Impressive.
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