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  1. Jonathan Edwards

    How to best move the understanding of ME/CFS forward (and the forum's role in that)

    Not that I am aware of. Good scientists nearly always get their grants rejected anyway - in any field. You learn to get money in for irrelevant projects that sound good and then work on what is important. Pretty much all my applications were rejected. We made progress in RA on the side. For a...
  2. Jonathan Edwards

    How to best move the understanding of ME/CFS forward (and the forum's role in that)

    The history of science is against you though. Einstein produced the theory of relativity and the basis for quantum theory as well, while an impecunious clerk with no practical science job when grand physics institutions were getting nowhere. And I said. The money is there - on offer. It is just...
  3. Jonathan Edwards

    TeamClots vs Cochrane

    Isn't that more of the same disingenuousness? we want to clarify that we have not published any data supporting plasmapheresis as a treatment for PCC. The paper mistakenly links our research on amyloid fibrin(ogen) to the endorsement of plasmapheresis without any evidence that we have done so...
  4. Jonathan Edwards

    TeamClots vs Cochrane

    But isn't that just the point being manipulated here? As far as I remember Kell spent much of his career in the same sort of unaccountable position of power he is griping about with editors and Cochrane - as the CEO of a major funding body, deciding whose research survived and whose not. His...
  5. Jonathan Edwards

    How to best move the understanding of ME/CFS forward (and the forum's role in that)

    I just think you have got this wrong @butter. As I have mentioned before, not so very long ago, I, together with two other 'international experts' was approached by the biggest research funder in the UK. We were effectively asked 'if you had as much money as you like what would you suggest we...
  6. Jonathan Edwards

    A causal link between autoantibodies and neurological symptoms in long COVID, 2024, Santos Guedes de Sa, Iwasaki et al

    Just that the method of measurement may be unreliable - for a hundred different reasons. We have seen how consistent.y poor methodology is in the psychiatric sector. I am afraid to say that it tends to be almost as bad in this sort of biomedical area. Everyone wants to report a positive result...
  7. Jonathan Edwards

    Family healthcare patterns as a proxy for transgenerational transmission of functional somatic symptoms in early childhood... 2024 Hogendoorn et al

    Doesn't this just show that parents who take their children relatively often to the doctor about intermittent ailments aged 0-4 continue to take them to the doctor more often 5-7 for such ailments? Does a six year old say to a parent - "you always used to take me to the doctor with tummy ache...
  8. Jonathan Edwards

    Preprint Flow Clotometry: Measuring Amyloid Microclots in ME/CFS, Long COVID, and Healthy Samples with Imaging Flow Cytometry, 2024, Pretorius

    But they aren't wispy. We have seen them on immunofluorescence and they are lumps. They are solid protein, so a lot higher density than cells, and they are as big as monocytes. The only thing that would stop these falling to the bottom of the tube even without centrifugation is the red cells -...
  9. Jonathan Edwards

    Preprint Flow Clotometry: Measuring Amyloid Microclots in ME/CFS, Long COVID, and Healthy Samples with Imaging Flow Cytometry, 2024, Pretorius

    This is the interesting question. It might be that a shift in concentration or activation of amyloid-forming proteins occurs in LC and ME/CFS and that this assay is a way to show that, but nothing to do with circulating micro clots in people blocking vessels. The use of the previous ME/CFS...
  10. Jonathan Edwards

    Preprint Flow Clotometry: Measuring Amyloid Microclots in ME/CFS, Long COVID, and Healthy Samples with Imaging Flow Cytometry, 2024, Pretorius

    I have not read the paper but there still seems to be no acknowledgement that particles of this size, if present in vivo, would have been removed by centrifugation? The sizes they quote are about monocyte size and would be removed by a brief low speed spin - much faster than red cells would...
  11. Jonathan Edwards

    The effects of a structured communication tool in patients with medically unexplained physical symptoms: a cluster randomized trial 2023 Abrahamsen

    Indeed. I am bid 40%, 40% it is, any more on 40%, do I hear 41%? anyone for 41%, yes the professor of GP in the check shirt over there, 41%, do I hear 42?..... the emeritus in the scuba diving kit over there at 65%. 65% it is. Now, come on let's have 100%, anyone for 100%? Worth every penny.....
  12. Jonathan Edwards

    A causal link between autoantibodies and neurological symptoms in long COVID, 2024, Santos Guedes de Sa, Iwasaki et al

    Have you ever done experiments on pain sensitivity in mice, Chris? To me this is far too good ever to be true. And it doesn't really add up if you look at detail as ever. To get a meaningful result with a system like this you would need a drug company unit running fresh experiments every...
  13. Jonathan Edwards

    Alexander technique

    I always used to prefer the Archimedes technique. A hot bath - with a bit of the water drained out because my wife has a smaller volume so if I got in after her I displaced too much water.
  14. Jonathan Edwards

    BMJ Letter — Long covid: I’d rather have a well researched and well informed doctor than “become my own physician”, 2024, Karen L Hargrave

    I wasn't implying that, or at least intending to. I was simply questioning the implication that there are specific treatments that are available outside the NHS that are not being provided. I include pacing under advice and support.
  15. Jonathan Edwards

    The extracellular matrix integrates mitochondrial homeostasis, 2024, Zhang et al.

    I think in this context the standard paediatric centile height charts would be adequate. They derive from vast amounts of data on normal children. A height of 5 foot ten in a twelve year old girl is going to be in a high centile (i.e. statistically at the very top end). There will be centiles...
  16. Jonathan Edwards

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    IiME have in the past invited people they do not necessarily agree with. That was one of the things that impressed me about the meetings.
  17. Jonathan Edwards

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    You can fool some of the people all of the time, but not all of the people with ME/CFS all of the time - in fact hardly ever. Walitt seems to be majoring on petulance.
  18. Jonathan Edwards

    The extracellular matrix integrates mitochondrial homeostasis, 2024, Zhang et al.

    It would be interesting to know if there is in fact any association with height or span. (Marfanoid of course does not particularly imply hypermobility. It would be a separate association, which starts to get complicated.) A paediatric service could check through the height statistics for its...
  19. Jonathan Edwards

    BMJ Letter — Long covid: I’d rather have a well researched and well informed doctor than “become my own physician”, 2024, Karen L Hargrave

    My reservation about looking at metabolism in circulating immune cells is that circulating cells are more or less by definition doing nothing useful or important. Once they are out of the body and cultured whatever might have been affecting them may be lost. They might be providing clues as to...
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