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  1. Jonathan Edwards

    Upadacitinib (rinvoq)--could it reduce fatigue in ME/CFS?

    The white cells in this case would be neutrophils. Having low B cells is not considered dangerous - nobody even bothers to measure them normally and you can manage without them for five years at least (we discovered). Neutrophils carry no individual memory so getting rid of them and getting new...
  2. Jonathan Edwards

    Upadacitinib (rinvoq)--could it reduce fatigue in ME/CFS?

    I am not very optimistic it would help. Hyponatremia in ill people probably involves a secondary hypothalamic/endocrine shift that can be activated by a whole range of signals including cytokines and other things. I think if problems in severe ME involved known cytokine pathways someone would...
  3. Jonathan Edwards

    Therapeutic BCG vaccine protects against long COVID: The BATTLE randomized clinical trial 2024 Jalalizadeh

    So the trial was not double blind. Pretty much a waste of time.
  4. Jonathan Edwards

    Therapeutic BCG vaccine protects against long COVID: The BATTLE randomized clinical trial 2024 Jalalizadeh

    I wonder what the 'placebo' was. BCG gives you a nice red bump to tell you that you had the real stuff. Not many dummies do that. A 'placebo' has to be credible mimic to be any use. And having a crossover interaction paradoxically causing hair loss all seems a wee bit lie cherry picking.
  5. Jonathan Edwards

    Upadacitinib (rinvoq)--could it reduce fatigue in ME/CFS?

    I don't think they research them so much as use them as leverage for income. Research requires rigour and common sense. I have spent my life researching inflammatory disease and these panels are, as far as I am concerned, unable to tell us anything useful. When cytokines matter you see their...
  6. Jonathan Edwards

    BBC: 'Atlas of cells transforms understanding of human body' (20 Nov 2024)

    This is marketing rather than science, @Sasha. Any grown up scientist has known since student days that 'cell types' are just convenient rough groupings. Every cell is different in one way or another. Every brain cell has a different structure and function. People write this sort of stuff to...
  7. Jonathan Edwards

    Trial design for drug trials for ME/CFS - discussion thread

    I have yet to see anything that suggests that this is serious science. There is no coherent background hypothesis as far as I know and no meaningful trials to date. That leaves us with something of the status of some arbitrary nineteenth century magical cure. If I remember rightly cryotherapy -...
  8. Jonathan Edwards

    Upadacitinib (rinvoq)--could it reduce fatigue in ME/CFS?

    None of these things mean much in clinical practice. They are done by fringe physicians who over-interpret them as a rule. I see no reason to think anyone with ME/CFS has had a cytokine storm. we are talking the difference between a gentle breeze of a few slightly high cytokines in some people...
  9. Jonathan Edwards

    Bias due to a lack of blinding: a discussion

    Only had a quick look but I thin it pretty certain that the trial tells us nothing other than nothing probably works much, otherwise the results would have differed for different arms. I am surprised that NICE endorses off label usage here. Presumably the committee was composed of believers...
  10. Jonathan Edwards

    United Kingdom: ME Association governance issues

    It isn't even an editorial. Editorial is often used to voice a point of view on behalf of a publication. It is not a place for an officer to voice a personal opinion.
  11. Jonathan Edwards

    United Kingdom: ME Association governance issues

    Ah, so it goes on to reveal the mind-blowing lack of insight behind the editorial in more detail. Riley seems to think he is somehow a provider of benevolence. The actual benevolence comes from members pockets and recently has been squandered (at least on one project). The whole tone comes...
  12. Jonathan Edwards

    United Kingdom: ME Association governance issues

    I don't think that is good enough from a trustee of a medical charity. 'Opinion pieces' based on personal anecdote in an area plagued by such anecdotes and desperately needing some considered thought are unacceptable and it is time that was understood.
  13. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    I will respond to both Nigel and Partinen when I get home. I am not sure the Partinen is worth the effort but I might as well point out that he has missed the point of my article (or several of the points).
  14. Jonathan Edwards

    United Kingdom: ME Association governance issues

    I am just dipping in to the forum while travelling. I am not up to signing a petition although the does not mean that Iw Ould not have done under other circumstances. I have read the editorial by Neil Riley. All I can says that it comes across as shockingly ill-informed and ill-considered. He...
  15. Jonathan Edwards

    The Concept of ME/CFS, 2024, Edwards

    Thanks for the heads up. I am currently in an Ecolodge in Peru with WIFI driven by a watermill. I hope to make some responses in the not too distant future but not tonight!
  16. Jonathan Edwards

    Could there be an on/off switch for ME/CFS and if there is, what would that tell us??

    They are as likely as anything to. Heavy metals were traditional in early medicine. Gold was almost insoluble but could be dissolved using sulfhydryl containing organic acids like thiomalate (a bit like the EDTA used for limescale). Gold sodium thiomalate (GSTM) was tried for consumption (TB)...
  17. Jonathan Edwards

    Could there be an on/off switch for ME/CFS and if there is, what would that tell us??

    Yes, highly plausible. If the process is perpetuated by signals in a re-entrant loop and one arm of that loop gets blocked efficiently enough the process could switch off completely. This happens rather rarely in most autoimmune diseases although there are some where it is quite common (e.g...
  18. Jonathan Edwards

    Perrin Technique

    There isn't really anything to say. It is just pseudo medical make believe. A bit like saying that cod liver oil is good for lubricating your joints - about as plausible as watering plastic flowers making them grow.
  19. Jonathan Edwards

    Was there a gap between trigger and onset of your ME/CFS?

    I think there is a problem with physicians who have an interest in this sort of thing in that what they see in clinics may be very skewed by referral patterns. There is also the problem with Covid that since almost everyone has had it, it is hard to know whether or not it has anything to do with...
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