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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Jonathan Edwards

    Dr David Tuller: My Berkeley-Backed Crowd-Funding Campaign 2nd April 2018

    I encourage everyone to support David. He has made a huge difference and can do even more this year.
  2. Jonathan Edwards

    My ritux experience so far

    As I have said before, I think Dr Mella is trying to let people down gently. Maybe he believes that there is a subgroup that responds but the evidence does not indicate that. I have followed responses in a dozen different diseases. I have seen where there is a biological effect with a consistent...
  3. Jonathan Edwards

    My ritux experience so far

    Er, um, yes, it is known to be used with high effectiveness in several autoimmune diseases because of the proof of concept study I published in 2004 in New England Journal of Medicine. Maybe some people have still missed the point that I effectively invented this way of treating autoimmunity...
  4. Jonathan Edwards

    My ritux experience so far

    Nobody as far as I know concluded rituximab was effective after the first trial- certainly not Dr Fluge. There was a suggestion that it might work, despite the primary endpoint not being met. When I reviewed the data in detail I was not convinced that there was the sort of consistent time course...
  5. Jonathan Edwards

    My ritux experience so far

    Hi Desertstorm, I don't post to this forum much any more but I would like to answer here. In case you are not aware, I was the physician who introduced the use of rituximab for rheumatoid arthritis and vasculitis etc. in 1998. I thought the early results in ME/CFS were interesting and my group...
  6. Jonathan Edwards

    IiME write to Prof Mark Baker of NICE: Battle lines are drawn

    'Therefore, I cannot accept at this stage that reports of flaws in one study invalidate the results of all the studies in this area.' Point 1: PACE invalidates the results of all the previous studies because it has brought to the attention of people who know something about trial design that...
  7. Jonathan Edwards

    Important new research from Professor Chris Exley linking aluminium in vaccines with autism

    The whole point of using alum as an adjuvant is that it stays put in the muscle where the IM injection is until it is taken up by macrophages several hours later and gradually transferred to lymph nodes a day or so later maybe. None of it is intended to go in to the bloodstream. The proportion...
  8. Jonathan Edwards

    I was cured with GCMAF

    You may be right but the alternative seems to be motivation for writing a book about oneself, or maybe getting other people to write it, that is likely to make PWME look really dumb if it claims to involve having Lyme disease cured by a 'drug' the inventor of which has said he no longer thinks...
  9. Jonathan Edwards

    I was cured with GCMAF

    I note that the 'inventor' of Golein said two years ago that the effect is even better without the actual GcMAF in it - the magical effects are just due to the olive oil it seems. The previous theory was apparently wrong (he said) so presumably nothing to do with nagalase. I also note that the...
  10. Jonathan Edwards

    IVIG Treatment

    You generate the evidence from decent research, as I did for RA. You don't hand out untried treatments without any monitoring or publication - simple. I would spend a lot of effort on brain imaging of various sorts. I would also try and pin down whether or not there is really a metabolic...
  11. Jonathan Edwards

    IVIG Treatment

    It does not give me joy to say this. I say it in the hope of making it clear to other patients that they may be wasting tens of thousands of dollars on unproven therapies. Your case is obviously very unusual and indeed I do not know the detail. It does not sound like ME/CFS from what you say -...
  12. Jonathan Edwards

    IVIG Treatment

    Using IVIG for low immunoglobulin levels is a completely different situation from using it for autoimmunity, or indeed in ME/CFS. In autoimmunity the use has nothing to do with low levels. If immunoglobulins are low then IVIG protects against infection but for the great majority of people with...
  13. Jonathan Edwards

    IVIG Treatment

    It isn't so much indetifying a condition as identifying a plausible causal link between the antibody and an effect on a tissue or organ system. We presumably always have to assume that even some people with obvious autoimmune disease have additional irrelevant autoantibodies in the way that...
  14. Jonathan Edwards

    IVIG Treatment

    Oh sure, there are people with ANA-fatigue. People with so-called primary Sjögren's syndrome can have an ANA (Ro in this case) and terrible fatigue and maybe some dryness of the eyes and mouth they might not have noticed much. In any lupus clinic there will be a substantial minority of patients...
  15. Jonathan Edwards

    IVIG Treatment

    To be able to define an illness as autoimmune one needs to have evidence of autoantibodies and a reasonably convincing story about how those antibodies are producing symptoms. For lupus we have had that for fifty years - we can find immune complexes and evidence for direct antibody attack on...
  16. Jonathan Edwards

    IVIG Treatment

    Presumably you have not been reading the posts. This is exactly what I have said in full previously in the sense of clinical experience without scare quotes. But 'clinical experience' with scare quotes is a phrase specifically used by clinicians who cannot be bothered to do things properly these...
  17. Jonathan Edwards

    IVIG Treatment

    Personalised medicine has nothing to do with handing out unproven treatments and relying on subjective accounts of benefit. It is to do with tailoring drugs based on scientific evidence. If you read my papers you will see that I paid detailed attention to personalising the use of rituximab in...
  18. Jonathan Edwards

    IVIG Treatment

    I do not see any paradoxes, just the usual problems of poorly conducted research. All we have is anecdotal hearsay and some inconclusive studies. 'Clinical experience' counts for nothing, as we learnt in the 1970s. I have no problem in watching the Perversely Dark documentary and considering...
  19. Jonathan Edwards

    IVIG Treatment

    Sorry GG, I respect your approach and your need to find a solution but your case is no proof of anything. That is the raw truth. Science does not make use of uncontrolled observations like that, except to set up proper studies.
  20. Jonathan Edwards

    IVIG Treatment

    You have accused me of being disingenuous, which I think is disrespect because it implies being deliberately misleading. I may be wrong but I am certainly not deliberately trying to mislead. The above quote seems to me closer to being disingenuous because we all know that there is no reliable...
  21. Jonathan Edwards

    IVIG Treatment

    The fact that so many doctors regurgitate this does not make much difference to the fact that it has been around for decades and there is no evidence. I spent my whole career in this field and am pretty sure it is bullshit - just repeating what others have said because it is fashionable. Sure...
  22. Jonathan Edwards

    IVIG Treatment

    Autoantibodies of some sort are present in a high proportion of normal people. ANAs are very common, high titres less common, but the studies I have seen suggest there is not much difference between controls and ME cohorts. The reason why autoantibodies arise is as far as we know nothing to do...
  23. Jonathan Edwards

    IVIG Treatment

    Fluge and Mella have made it clear that the phase 3 trial results are NEGATIVE (they have communicated with me personally as well). There is no need to wait for publication. There is no effect. We have evidence of absence of an effect for IVIG - from at least one formal trial that failed to...
  24. Jonathan Edwards

    IVIG Treatment

    This is a very old theory that has been hanging around in immunology since 1960 and there is no evidence to support it. If there was any truth in it I think we would have discovered it thirty years ago. I regard it as bullshit to be honest. We now know that rituximab has no effect in ME/CFS...
  25. Jonathan Edwards

    Important new research from Professor Chris Exley linking aluminium in vaccines with autism

    I really do not understand what you are going on about Hip. The aluminium found in brains is just as much 'locked up' in compounds as in the environment. There is no metal here anywhere. Metal is what you call a crystalline arrangement of atoms of the single element. 'Free' aluminium consist of...
  26. Jonathan Edwards

    Important new research from Professor Chris Exley linking aluminium in vaccines with autism

    Surely what is in vaccines is alum, not metal aluminium - that is to say some form of aluminate or aluminium oxide hydroxide derivative. I am pretty sure that alum has been used for tanning and fabric dyeing for centuries. (Wikipedia: Historically, alum was used extensively in the wool...
  27. Jonathan Edwards

    David Tuller: My brief encounter with Prof Crawley

    If there is a recording of the presentation I would like to be notified of it and have access. I may be able to do something useful in response, probably in terms of contacting Bristol University and or the College of Physicians.
  28. Jonathan Edwards

    Ponderings and speculations about purinergic signaling, in pursuit of a unified ME/CFS theory

    I agree. An anti-CD39 autoantibody would be a nice concept here. My one thought about sharpening the analysis would be to remove all reference to 'pro-inflammatory'. The reason for this is that we are now dealing with cellular responses at a level of detail that makes 'inflammation' too clunky...
  29. Jonathan Edwards

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    No, you did not get it wrong and don't be put off @Clair&Mike ! I am very happy to be involved in this sort of capacity. I did not treat ME as a physician but have spent much of the last four years closely involved in the research scene. I have the advantage of not having any vested interest in...
  30. Jonathan Edwards

    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    I would be careful about drawing conclusions fro this paper. This is a genetically engineered mouse that may have ten times as many T cells as it should. I cannot see any chance of human T cells altering metabolic balance except in gross t cell lymphomas. Rituximab does not work for T cell...