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  1. Jonathan Edwards

    Co-morbidities - prevalence in people with ME/CFS

    Plus maybe sometimes having diagnoses that may not have much basis - like MCAS. And the missing bits may be mostly diagnoses that do not have a very well defined basis. The diabetes, migraine and Raynaud's come out right. Maybe the most interesting bit is that allergy rate is normal - since...
  2. Jonathan Edwards

    EDS, hypermobility, and the link, if any, to ME/CFS

    That is really quite interesting because comparing the range of conditions gives some sort of basis for judging reliability. Most of the results are very much in line with the normal population. Allergy is said to be about 10% Raynaud's is about 5% Diabetes is around 1% and so on. The...
  3. Jonathan Edwards

    Co-morbidities - prevalence in people with ME/CFS

    Copied post That is really quite interesting because comparing the range of conditions gives some sort of basis for judging reliability. Most of the results are very much in line with the normal population. Allergy is said to be about 10% Raynaud's is about 5% Diabetes is around 1% and so on...
  4. Jonathan Edwards

    Adapt or die: how the pandemic made the shift from EBM to EBM+ more urgent, Greenhalgh et al, 2021

    I am not sure I agree. Knowing the effectiveness of masks is of great importance and trying to assess it in a real life situation makes sense. The cost looks to be not much more than one cent per head of population. If it was never completed that is not necessarily a fault of the original...
  5. Jonathan Edwards

    The Occurrence of Hyperactivated Platelets and Fibrinaloid Microclots in ME/CFS, 2022, Nunes, Pretorius et al

    The haematologist did not make any specific comment on the paper, which I had emailed several days before, other than that they had never heard of the investigators. The only other relevant comment made was that 'there is a lot of rubbish about'. I interpreted the responses as indicating that...
  6. Jonathan Edwards

    Adapt or die: how the pandemic made the shift from EBM to EBM+ more urgent, Greenhalgh et al, 2021

    Yes, but we never did. Mechanistic evidence is part and parcel of the early stages of all clinical research development. But because of biological complexity it is never good enough as a measure of clinical utility. This is phoney academia with knobs on. It is doing a lot of harm.
  7. Jonathan Edwards

    United Kingdom: Science Media Centre (including Fiona Fox)

    Would that be in Chomskyan X-bar theory or syntactic Merge? Perhaps it could become a thing - video articles with moving sentences to keep your attention away from the Shein adverts.
  8. Jonathan Edwards

    (Dis)respect and shame in the context of ‘medically unexplained’ illness, 2022, Cheston

    And if you really believe in getting things right you can get more done than anyone else much despite being unfundable, if my own experience is anything to go by! So don't give up.
  9. Jonathan Edwards

    (Dis)respect and shame in the context of ‘medically unexplained’ illness, 2022, Cheston

    I often wonder that. Discussion of politics unrelated to ME is forbidden here but one could ask the question on a wider front this week! But sometimes we can muffle some of the louder clanging and, yes, it is always worth trying.
  10. Jonathan Edwards

    (Dis)respect and shame in the context of ‘medically unexplained’ illness, 2022, Cheston

    It is actually quite simple, I think. I worked amongst people interested in the MUS dustbin all my life. I didn't get involved because there were no leads that looked as if one could make progress on. The problem looked too difficult. So the field was taken over by empty vessels making noise...
  11. Jonathan Edwards

    Article: Transformational therapy cures haemophilia B

    I think it almost certain that this is slam dunk bona fide. This is where medicine is really transforming what can be achieved. If gene editing achieves normal levels of a protein it means not only that the treatment has got to its target but it has harnessed the regulatory mechanisms needed to...
  12. Jonathan Edwards

    (Dis)respect and shame in the context of ‘medically unexplained’ illness, 2022, Cheston

    I think it makes sense but I can see how PWME might still find it misses the point. The point for me as a medical scientist interested in ME is that the problem is not 'shaming' so much as sheer incompetence and bad manners on the part of those claiming to know how to treat ME or 'MUS'. The...
  13. Jonathan Edwards

    Nature: A preoptic neuronal population controls fever and appetite during sickness, 2022, Osterhout et al

    We have known about cells in hypothalamus sensitive to bacterial endotoxin, causing fever and nausea for a long time. It may be interesting that they have been characterised further. It would be more interesting if they had found cells with separate effects - some for fever, some for fatigue...
  14. Jonathan Edwards

    United Kingdom: UKCRC (UK Clinical Research Collaboration) Subgroup on ME (part of the UK Government ME/CFS Delivery Plan)

    :whistle::nerd: Seems there will be. I have accepted the invitation to join (suggested by CS). ;)
  15. Jonathan Edwards

    "The whole of humanity has lungs, doesn't it? We are not all the same sort of people": .. an online..intervention: SELF-BREATHE, 2022, Chalder et al

    What we need next is SELF-POO - an online digital intervention for constipation. It could relieve a vast amount of suffering.
  16. Jonathan Edwards

    The itaconate shunt hypothesis

    Well, presumably for ME when the person is feeling terrible would be the right time? That is if we are trying to blame feeling terrible on an inability to access energy.
  17. Jonathan Edwards

    The itaconate shunt hypothesis

    Yes, but if you do NMR on a whole leg you have plenty of metabolite! You can do NMR on arms and legs without disturbing the patient at all - other than asking them to put a leg in a ring magnet.
  18. Jonathan Edwards

    The itaconate shunt hypothesis

    Sure, but if the claim is that symptoms are due to failure of major respiratory pathways preventing energy usage then surely some easily identified molecules would show shifts. You might not be able to track exactly why but if there isn't even a shift in the some common pathway elements it is...
  19. Jonathan Edwards

    The itaconate shunt hypothesis

    I was talking about magnetic resonance spectroscopy rather than mass spectroscopy.
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