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  1. Jonathan Edwards

    Symptomatic Treatment: Huperzine A/B

    The Charité group has speculated that these antibodies might be involved in some cases ofME but we have no good evidence for that being the case and the antibody data actually make it extremely unlikely, since antibody levels are only minimally different from the normal population. So I would...
  2. Jonathan Edwards

    NICE ME/CFS draft guideline - publication dates and delays 2020

    I suspect that the unreal appearance of the guidelines reflects in part how many different groups of people are involved in cobbling them together. But if one was being strictly rational ne might say that if it is now acknowledged that there is no useful treatment then money can be saved by...
  3. Jonathan Edwards

    DecodeME - UK ME/CFS DNA study underway

    Luis Nacul is still very much part of the LSHTM Unit as I understand it. However, it seems that the original collaborative plan did not prove workable. I don't think going over the reasons would help anyone. The important things are that the project is going ahead and both units deserve full...
  4. Jonathan Edwards

    BPS attempts at psychologizing Long Covid

    I think the garbage shows that this is more than just ignorance. This is arrogant hamfisted evangelical busy-bodying of a very nasty sort. Despite what @JamBob says, I actually think this shows a bad heart; imposing your self-righteousness on others is bad. The journalist should be ashamed to...
  5. Jonathan Edwards

    Rituximab and placebo response

    She could start with the paper by Knoop, White and others from 2007 (Psychother. psychosom. ;76(3):171-6. doi: 10.1159/000099844.) which says that CBT is meant to be a placebo - it is intended to work the way placebos work. White of course later denied that there was a placebo effect in ME but...
  6. Jonathan Edwards

    BPS attempts at psychologizing Long Covid

    That is an interesting video. Dr Tomlinson looks to be suffering from some fairly serious psychopathology - may be childhood trauma, or maybe something more real. For a journalist to quote someone whose body language so clearly exudes nonsense is a serious failing.
  7. Jonathan Edwards

    BPS attempts at psychologizing Long Covid

    A good letter from Charles. Sadly the Guardian/Observer seems impervious to common sense and tact when it comes to medical matters but one day things might change.
  8. Jonathan Edwards

    BPS attempts at psychologizing Long Covid

    ME Association @MEAssociation · 5h . @eleanormorgan Long read but, if you're up for it, well worth the effort - 'Long Covid: ‘Is this now me forever?’' | The Observer, 29 November, 2020...
  9. Jonathan Edwards

    The Lonely, Isolating, and Alienating Implications of ME/CFS. Boulazreg & Rokach. 2020

    I thought Mrs Claus had moved to their holiday home in Martinique having got fed up with the bananas going soft in the garage and reindeer milk with the muesli. But I couldn't find the paper just now.
  10. Jonathan Edwards

    Rituximab and placebo response

    Long lived plasma cells are part of the discussion but you need lethal (with rescue) doses of cyclo to get at them meaningfully. That was the brick wall I hit with rheumatoid. Tolerable doses of cyclo really do not dent plasma cells, even if they do a smidgin more than rituximab which does not...
  11. Jonathan Edwards

    Rituximab and placebo response

    Fluge and Mella used cyclophosphamide because they thought it was an alternative to rituximab for B cell targeting. I don't know where the idea came from that it was being directed at T cells. The paper you quote seems to be about the immunostimulatory effect seen with low dose...
  12. Jonathan Edwards

    Rituximab and placebo response

    And I did not say it. I can understand why my comments my be irksome but please read what I say each time and note that I am simply advising caution and raising a specific factual example (rituximab) where we know the answer. There is no problem with people mentioning anecdotal accounts but I...
  13. Jonathan Edwards

    Rituximab and placebo response

    You are already presuming a 'response to treatment' but all that is observed is an improvement. That would probably have to be coincidence if there was zero expectation but do people really try drugs with zero expectation? It seems a contradiction in terms. The real problem is that other than...
  14. Jonathan Edwards

    Rituximab and placebo response

    I am afraid that I think there is only one plausible explanation of the placebo effect - suggestibility - for the reasons given above. The time course fitted what was expected very neatly. Before I had pointed out the expected time course it had not done so. I cannot see any unanswered...
  15. Jonathan Edwards

    Rituximab and placebo response

    As Andy says,I am not saying that at all, simply pointing to facts that have to be explained somehow and which show that we cannot dismiss major placebo responses in people diagnosed as having ME/CFS. These issues are much morecomplex than just 'what it sounds like'. It is worth looking at the...
  16. Jonathan Edwards

    Approach to Fatigue Best Practice, 2020, Dukes et al

    I suspect they know all about the loss of approval of GET - which is why they say 'individualised exercise therapy'. It improbably a red flag relevant to the NICE draft. Individualisation is a weasel word.
  17. Jonathan Edwards

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    I cannot see it having any impact on anything. I think it is there for reasons of political correctness, like the equal opportunities bit.
  18. Jonathan Edwards

    Rituximab and placebo response

    A series of posts have been moved from Aripiprazole - Abilify Not specifically, just a trial that when looked at carefully in common sense terms provides evidence with a high probability of being meaningful. My proof of concept trial for rituximab in systemic autoimmune disease was...
  19. Jonathan Edwards

    Aripiprazole - Abilify

    It is worth having a careful look at the figures from the open label rituximab study I appended to my testimony for the NICE committee. Placebo response in ME can be huge. It can produce 'recovery' in a good proportion. There is no doubt about that. If there is any point inS4ME at all it is...
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