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  1. Jonathan Edwards

    If ME/CFS research got £1 billion, what would stop it being wasted?

    I am suggesting that your information sheet should be honest, and in a way that pretty much no information sheet for CBT trials has been so far. Being honest means telling patients what the evidence is for thinking that the treatment might help them. There isn't any so presumably previous...
  2. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    I agree that Hilda seems to have done her best and cannot be now accused of still trying to cozy up to Cochrane. But what has been clear from the outset is that, apparently as with Tovey, she never understood the general argument about these trials being worthless as gauges of treatment...
  3. Jonathan Edwards

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    It would have been interesting to have a video of that conversation to re-run in slow motion like on a TV crime series. I used to think Cochrane reviews were fairly reliable but I also assumed that anyone who got involved in the practical side of Cochrane must be a bit of a nerd, addicted to...
  4. Jonathan Edwards

    Mind and Body in the Guardian again

    I actually see it the other way around, inasmuch as I think they even have coherent thoughts on this. The 'mind-body' or BPS people do not think thoughts are physical. That is what the standard science view thinks. They think that thoughts are causal in a non-physical way. They think they are...
  5. Jonathan Edwards

    Mind and Body in the Guardian again

    I have come to think that 'these diseases' have told us just how little we understand of human nature, or at least how little the human-naturologists (aka psychologists) do.
  6. Jonathan Edwards

    If ME/CFS research got £1 billion, what would stop it being wasted?

    I largely agree @Nightsong. There might be an opportunity to do something creative with AfME at this point but at this point I would just be interested to see what reactions might be to this discussion from whatever quarters.
  7. Jonathan Edwards

    USA: Mount Sinai PACS clinic and Dr David Putrino

    In what sense? Cutting edge researchers do not normally produce social media threads of garbled messages about off label treatments.
  8. Jonathan Edwards

    Mind and Body in the Guardian again

    I don't understand that sentence. I meant that the term is universally used to imply that the clinical features are due to inappropriate thoughts, secondary gain, so-called conversion disorder or whatever. That is what doctors mean. That has nothing to do with what is actually wrong - which we...
  9. Jonathan Edwards

    USA: Mount Sinai PACS clinic and Dr David Putrino

    Putrino isn't an immunologist or even, as far as I know, a medic. Why is he writing this stuff? There are no useful data. What is the justification?
  10. Jonathan Edwards

    If ME/CFS research got £1 billion, what would stop it being wasted?

    Fair enough but I wonder if we should be so pessimistic. MEA seem to have acquired £3M research funds for nothing in particular. IiME raise enough to run very costly conferences every year. If S4ME members decided to donate to the website which is already there, for this precise purpose, and...
  11. Jonathan Edwards

    If ME/CFS research got £1 billion, what would stop it being wasted?

    How would you devise an honest information sheet for patients?
  12. Jonathan Edwards

    Mind and Body in the Guardian again

    Functional has a bad name because it was devised and is universally used by doctors to mean behavioural/psychological despite the fact that they deny this in writings they know may be read by patients. Seizures are not classifiable as functional but there are recognisable groups of movement...
  13. Jonathan Edwards

    Mind and Body in the Guardian again

    Pity she had not done some rheumatology. Steroid injections often produce permanent resolution of symptoms probably because they have a potent local shrinking effect on tissue matrix. She probably had a tongue of soft tissue nipped between some bony healing spurs and the steroid shrank it back...
  14. Jonathan Edwards

    Mind and Body in the Guardian again

    As someone who has done an MA course in philosophy I can say no to that. 'Continental' philosophy, with scare quotes, is defined as a particular stance. It was popular in Germany and France, yes, but so was analytic philosophy in some circles.
  15. Jonathan Edwards

    If ME/CFS research got £1 billion, what would stop it being wasted?

    Does it? To me it could be 'that simple'. There doesn't need to be any formal appeal as far as I can see. We live in 'viral' times, in more ways than one. If there is an account to donate to all that is needed is for us to make it known to each other that there is a will to raise a substantial...
  16. Jonathan Edwards

    If ME/CFS research got £1 billion, what would stop it being wasted?

    Doing it through Sonya sounds a good plan to me if it is more complicated than just sending donations to an Edinburgh account already set up. But the latter would be the simplest of all.
  17. Jonathan Edwards

    If ME/CFS research got £1 billion, what would stop it being wasted?

    I am not sure what 'leadership' means here. People often donate large sums of money to research units without being asked by the unit - in legacies for instance. Jo and I had a legacy of over £100,000 out of the blue on one occasion. It would obviously be useful to know how the Edinburgh people...
  18. Jonathan Edwards

    Mind and Body in the Guardian again

    Although Freud and, I am pretty certain, Engel, were Jewish. I suspect that the whole field may be an offshoot of a North/Central European pattern of thinking called Continental Philosophy, which is mostly hot air. The same sort of story continues with the idea that our experience of the world...
  19. Jonathan Edwards

    Mind and Body in the Guardian again

    Freudian hogwash has always been speciality of the centre left.
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