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  1. Jonathan Edwards

    Closed 2022 Pilot study in Norway - Daratumumab in ME/CFS

    The original idea of targeting B cells in ME was because some patients seemed to get better after having B cells depleted (for cancer). Then a large trial showed no effect from B cell depletion. So I think it is hard to put any weight on a theory related to B cells - the original reason did not...
  2. Jonathan Edwards

    The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

    It doesn't make a lot of sense and I think it is a pity this sort of stuff is going around social media. Fibrinogen is the normal soluble protein that we all need to be healthy. Clots are the fibrin cleavage product. An apheresis machine designed to remove clots might well give you a pot of...
  3. Jonathan Edwards

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

    The only valid way to do this is on a population based cohort and the only one I know of - at the ME Biobank - found no relation between ME and hyper mobility I was told. The problem about rheumatologists using the Beighton score is that they have learnt this parrot fashion without having any...
  4. Jonathan Edwards

    Closed 2022 Pilot study in Norway - Daratumumab in ME/CFS

    I would be very cautious about using drugs of this sort in the presence of the pandemic. Patients may have unfortunately died because rituximab has blocked their ability to respond to vaccination. Covid has completely changed the rules about using immunosuppression in the developed world.
  5. Jonathan Edwards

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

    It would but these look quite 'heavy' to me. Platelets include quite a lot of lipid, which is lighter than water. Loose uncondensed fibrin clot may have almost the same density as plasma but these particles look like fairly solid protein lumps. Moreover, most of them seem to be hundreds of times...
  6. Jonathan Edwards

    Long Covid in the media and social media 2022

    This is really unhelpful. It may terrify quite a lot of people and it is full of false arguments.
  7. Jonathan Edwards

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

    I wonder if the binding of thioflavin T causes amyloid rich micro-aggregates? Patients with a polyclonal anamnestic antibody response after an infection might have Thioflavin T cross-linking antibodies or something like that, although I am doubtful they would.
  8. Jonathan Edwards

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

    It is a pity we do not have a haematologist here. I have asked for an opinion but it is probably in an in tray. I will try to explain why, with my limited knowledge of clotting, I cannot make sense of all this. (My limited knowledge does extent to a month working in a clotting lab as a...
  9. Jonathan Edwards

    Trudie Chalder, BPS and MUS proponent - presentations, interviews and news

    I agree. The problem is actually something quite different. It is the need for doctors to understand enough about biochemistry to be able to explain to their patients why they should take allopurinol and the arguments for and against continuing. The situation is actually much more complicated...
  10. Jonathan Edwards

    Trudie Chalder, BPS and MUS proponent - presentations, interviews and news

    Spontaneous gout is much more common in men, and even more so in Maori men. Old ladies get gout if put on diuretics. I don't quite get what the Intentional Non-Adherence Scale is supposed to do and wonder if it was modelled on the Chalder Fatigue Scale. The results suggest that, as one might...
  11. Jonathan Edwards

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

    I have asked a haematologist to look at the MS for me. I don't know if Chris has any haematologists to consult. I think we need expert input on this. The input at UCL Div of Med Grand Round on Covid vascular phenomena was that nobody had heard of this work.
  12. Jonathan Edwards

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

    Then it should be indicated in the paper. Methodology with fluorescence microscopy is so often inadequate. If one wants work to be taken seriously then it is worth putting the effort into a manuscript to cover these things.
  13. Jonathan Edwards

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

    I don't think there is anything new about this to be honest. Adequate hydration has been a priority at least ever since I was a medical student. It is normally addressed by using intravenous fluid.
  14. Jonathan Edwards

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

    It is entirely normal. If blood is taken from a small vein that can only provide a limited supply there is always a risk of clot formation on the needle or in the syringe. Venous blood is dark bluish purple anyway and if flow is slow it is likely to be more de-oxygenated. Colour has nothing to...
  15. Jonathan Edwards

    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    He is trained as a neurologist. His interests in complementary medicine certainly make things complicated. Looking at the UCLH webpage I wonder if he has stopped doing the CFS clinic because it does not seem to be mentioned.
  16. Jonathan Edwards

    Stellate ganglion block reduces symptoms of Long COVID: A case series (2021) Liu et al

    Not sure how you return something to a healthier state by stopping it working with a block?
  17. Jonathan Edwards

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

    If they have found abnormal micro clots in RA then including three cases of RA in the ME series is just incompetent. I looked up Kell. His background seems unusual. The paper on RA is revealing. It makes a lot of the work of my old colleague, Alan Ebringer, which nobody much has taken seriously...
  18. Jonathan Edwards

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

    Yes, I think it is basically a reflection of the fact that nowadays people who work on these things have no basic histological training, or indeed basic pathological training on inflammation. So the terminology is garbage. 'Endotheliitis' as a component of graft rejection seems fair enough as a...
  19. Jonathan Edwards

    UK Parliament: ME/CFS Announcements: Statement by Health Secretary Sajid Javid, 12 May 2022

    Saul Berkovitz is a neurologist interested in ME/CFS, working at the Royal National Hospital of Integrated Medicine.
  20. Jonathan Edwards

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

    One thing that perhaps worried me most is that the method section of the paper says nothing about blinding. It indicates that samples were viewed under a microscope and areas selected for image analysis. I am afraid that this is the perfect scenario for observer bias. I used to do this sort of...
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