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  1. Jonathan Edwards

    Experience with LDN? low dose naltrexone

    I have come around to thinking that a high quality LDN trial for ME must be done. I don't feel I should give a running commentary on the Working Group discussions but I get the feeling this is widely agreed. In fact it may be a fait accompli in that physicians are already planning LDN studies...
  2. Jonathan Edwards

    Experience with LDN? low dose naltrexone

    I agree that there are various aspects of the LDN story that have an alternative medicine ring about them and might be convenient if wanting to argue against negative results from trials. 1. 'Go low, go slow' is a standard mantra for unproven remedies used off label. Dose schedules for drugs...
  3. Jonathan Edwards

    Experience with LDN? low dose naltrexone

    I had a look at that and was not impressed that there was anything other than speculation involved. If we do not even know its a drug works it is premature to claim to know how it works! There seems to be a suggestion that the effect might be due to a dextroisomer, rather than the levoisomer...
  4. Jonathan Edwards

    Experience with LDN? low dose naltrexone

    This is what one keeps hearing but it is interesting to consider how the physicians ever came to know this was the right thing to do. It is easy to think physicians have an eye for such things - 'clinical judgment' - and can be skilled at juggling doses. My experience of the reality is that one...
  5. Jonathan Edwards

    Converging Evidence of Similar Symptomatology of ME/CFS and PASC Indicating Multisystemic Dyshomeostasis , 2023, Marks

    The thermostat analogy is indeed a no-brainer, but we can all think of that, and the reasons why it might be right or wrong. It only gets interesting if you have a proposal for what the specific signal error is. Waving hands at 'multi systems' is the opposite of that.
  6. Jonathan Edwards

    Converging Evidence of Similar Symptomatology of ME/CFS and PASC Indicating Multisystemic Dyshomeostasis , 2023, Marks

    Absolutely. I am afraid that to me multi systemic dyshomeostasis sounds about as hand-waving as biopsychosocial. If a thermostat misbehaves because a wire has come out it is probably more useful to say a wire has come out than to call it dyshomeostasis. I am also not convinced by symptom score...
  7. Jonathan Edwards

    Anyone tried H2O2 therapy?

    Why should anybody want to do it? You might as well study washing your ears out with turps or sitting on a cold floor for 3 hours. This is the world of fake news and black magic, basically. The depressing thing is that this sort of pseudoscience is now published in what look like science journals.
  8. Jonathan Edwards

    Anyone tried H2O2 therapy?

    Seems to be just some stories on the net of wonder cures, isn't it? People like to believe in these things it seems, but I haven't seen any reason to take this seriously.
  9. Jonathan Edwards

    Passive transfer of fibromyalgia symptoms from patients to mice, 2021, Goebel et al

    No, research assessment exercises do not go back to see if your paper in a top journal proved unreplicable. Did any of the PACE authors get fired? Sadly not. In medicine, if major progress is made with mechanisms or treatments, with readily replicable evidence then all tends to go quite well...
  10. Jonathan Edwards

    Aripiprazole - Abilify

    If it is a good thing to inhibit an inflammasome then it is likely to be more use using a drug tailored to doing that rather than some obscure psychiatric drug that just happens to do it a bit, if you are lucky. This is idea that people should use drugs like this because someone has shown some...
  11. Jonathan Edwards

    Passive transfer of fibromyalgia symptoms from patients to mice, 2021, Goebel et al

    I don't think we can assume anything because at present we have no reliable evidence of any particular mechanism. You need to be aware that a high proportion of research papers in this sort of area are just garbage. Sad to have to say that because it was not always the case, but it is the...
  12. Jonathan Edwards

    Passive transfer of fibromyalgia symptoms from patients to mice, 2021, Goebel et al

    Acclaim, basically. Every scientist wants to be seen as a groundbreaker. The pressure to produce high impact work is also great. You don't get your contract renewed if you don't produce hot papers.
  13. Jonathan Edwards

    Article: Is my study useless? Why researchers need methodological review boards

    I think it is the other way around. Standards of ethics committees have probably fallen with commercialisation of the research ethic.
  14. Jonathan Edwards

    Article: Is my study useless? Why researchers need methodological review boards

    This sounds a bit behind the times. When I was on the UCL ethics review panel in the 1980s we took seriously whether the study would produce useful results if it involved any risk to patients. That would be the case for any drug testing, invasive intervention or even anything that might cause...
  15. Jonathan Edwards

    Aripiprazole - Abilify

    This seems to be the story for all these drugs: Abilify, naltrexone, whatever. Maybe they think it sounds good, or distracts from them being basically psychiatric drugs. As far as I am aware there is no meaningful evidence for it for any of them.
  16. Jonathan Edwards

    Experience with LDN? low dose naltrexone

    Any particular reason to think that?
  17. Jonathan Edwards

    Experience with LDN? low dose naltrexone

    I don't have an account for Facebook and am glad I don't. Sometimes it limits things but for various reasons I think it best for me not to join! Maybe for the same reason it is such a blessing that I never joined Twitter - for everyone.
  18. Jonathan Edwards

    Experience with LDN? low dose naltrexone

    It would be useful to know if there is any knowledge about mechanisms and schedules. If the dose has to be increased slowly because of side effects then I think blinding becomes pretty well impossible. If so I think the only option is to do a fix schedule study to see if benefit can be shown...
  19. Jonathan Edwards

    Experience with LDN? low dose naltrexone

    A practical question that comes up in the context of an LDN trial is dosing. Titrating the dose up to find a best dose is very difficult to combine with a randomised fully blinded controlled design. The simplest option would be just to try four different dose levels. The next thing might be to...
  20. Jonathan Edwards

    Passive transfer of fibromyalgia symptoms from patients to mice, 2021, Goebel et al

    Shooting nerve-zaps seem to me to be a fairly common and hard to interpret symptom. Sometimes they can be put down to trapped soft tissues in joints or under ligaments. Muscle cramps may do it. Nerve root compression will give shooting pain but it tends to last a lot longer than a zap and there...
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