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  1. Jonathan Edwards

    Sense about Science (UK) and subjective outome measures

    It is certainly nonsense in the sense that there has been no 'wider shift' to subjective measures. Subjective measures have been used all along and are critically important, but not enough. I was trying to find out who tweeted that. It shows a remarkable medical science illiteracy.
  2. Jonathan Edwards

    Raynaud's Syndrome in Fibromyalgia and ME/CFS

    The article at the top is a commercial health site muddle. If you have blueness and coldness of more than hands and feet it is probably not Raynaud's. Raynaud's is a very specific problem relating to digital sympathetic nerves and is best identified by a yellowish-white phase, followed by...
  3. Jonathan Edwards

    What we're not being told about ME - UnHerd (Tom Chivers)

    I wonder what Michael Sharpe thinks the commentators have missed in the PACE paper? Maybe the truncated Y axis? Maybe the inappropriate comparator arms? Maybe the absence of any significant objective changes? Hard to say.
  4. Jonathan Edwards

    What we're not being told about ME - UnHerd (Tom Chivers)

    The subtitle to the article quoted by @Adam pwme was clearly an error, maybe by a subeditor. Tom said he would get it changed, although not seen that so far.
  5. Jonathan Edwards

    History of NICE decision to set up 2020 Committee

    I guess Tom Chivers the journalist.
  6. Jonathan Edwards

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Well that seems to make clear what stakeholder really means, despite the woke gloss. It means money.
  7. Jonathan Edwards

    Oxaloacetate

    Well what about potato?
  8. Jonathan Edwards

    Oxaloacetate

    I don't understand this. If most of our food energy goes through the citric acid cycle I would guess that we make use of about 500 gram of oxaloacetate molecules a day. Yes, part of the molecule gets recycled but if there was a block to making oxaloacetate that needed topping up with...
  9. Jonathan Edwards

    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    It may be that Hammond realises that for people like him it is a better strategy to let the guideline be published and make use of all the loopholes to carry on the same rather than make a big hoo-hah that just brings all the issues to people's attention.
  10. Jonathan Edwards

    2018: Discussion on the NICE procedure: what to expect next?

    It just means that different people are shouting louder at RCP I think.
  11. Jonathan Edwards

    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    Was it sauté brain this time @Trish - you really should be careful of these moderators.
  12. Jonathan Edwards

    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    I think he was misunderstanding a response to his comment that the science was uncertain. He thought somebody was suggesting that the science of ME was sorted. What is sorted is the science of CBT and GET - they don't work. Edit: what hinterland said!
  13. Jonathan Edwards

    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    'with a huge range of causation' So Dr Hammond can now divine the cause of each patient's illness and base treatment on it? Goodness knows what the bit about diagnostic tests was about. He seemed to miss the point that there was certainty about treatments not having a useful effect.
  14. Jonathan Edwards

    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    Thanks for sending the whole Hammond piece. Yes, it is dreadful. Drivel dressed up as 'common sense'. This is just what is problematic - appearing to provide everything patients might want but in fact providing untested treatment that probably achieves nothing. At least he seems to agree that...
  15. Jonathan Edwards

    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    Is the rest problematic? It is if he wants a compromise to suit everyone. That is precisely what we need to avoid.
  16. Jonathan Edwards

    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    Yes, I agree. Having tried to look at the article it doesn't seem too bad except being wishy washy about let's all compromise if we have different views. I am banging on about the case by case thing because it looks like what might derail the whole business. Although, fortunately, it should have...
  17. Jonathan Edwards

    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    The science is quite certain Dr Hammond. PACE shows very clearly that CBT and GET either have no effect or such a small effect that they are not cost effective. Moreover, there is significant informal evidence of harm. But what I see of his piece otherwise looks OK -are there bad bits later?
  18. Jonathan Edwards

    United Kingdom: Bath paediatric CFS/Fatigue clinic - Esther Crawley; Phil Hammond

    Yes, but this case by case argument is becoming seriously pernicious. It allows clinicians to use whatever they like under the guise of 'choice'. Being sympathetic while at the same time making people worse for life is not what is needed. It is time that touchy-feely be-nice-to-patients...
  19. Jonathan Edwards

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Enough of those and you'd get a Norwegian guideline...
  20. Jonathan Edwards

    United Kingdom: News from BACME - British Association of Clinicians in ME/CFS

    Therapists come under clinicians I think. Moreover, it would do no harm for BACME to include all clinicians. Therapist organisations are pretty much by definition professional self-help groups. What is needed is an organisation that is centred around learning rather than meal ticket. In...
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