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  1. Jonathan Edwards

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

    Pure speculation but my understanding is that Jo Daniels was penalised in some way for tweeting about CBT a while back. I wonder if the problem is that this has meant that the sensible reformers have had more scope to tidy up some further loose ends in the guidelines and that this has proved...
  2. Jonathan Edwards

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

    I think the change in leadership has already been organised. Fiona Godlee is stepping down. She made a remark about the BMJ moving into some exciting new phase. As to what that will bring who knows but it doesn't sound too promising to me.
  3. Jonathan Edwards

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

    I think the only rational interpretation is that the final report will stick to the draft. There may be a minority report from those who stepped down but it might be hard for them to produce something that doesn't look sour grapes and isn't torn to pieces.
  4. Jonathan Edwards

    BMJ: Chronic fatigue syndrome and Long Covid, moving beyond the controversy, 2021, Newman

    I think @chrisb is right in his history. When I started medicine in 1970 we worked on the basis that we thought we had a scientific understanding of what was wrong with people, at least some of the time, and we guessed what was likely to help most based on the scientific analysis. We did that...
  5. Jonathan Edwards

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

    I had thought there were 4 patient reps, including Charles.
  6. Jonathan Edwards

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

    And Garner's comment is so true: “What is serious is that those resigning are some of the most respected service providers for ME/CFS services in the country. This can only mean that the disagreement is fundamental to care of people with ME/CFS, in terms of what works and about the balance...
  7. Jonathan Edwards

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

    I had a look at the BMJ news piece published today. It is probably best for me not to write a rapid response although I am not actually aware of agreeing to any confidentiality when I agreed to be an expert witness. The author of the news piece notes: It is unclear, however, how the evidence...
  8. Jonathan Edwards

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

    It seems the article was written by a freelance journalist often used by BMJ. If an article is going to be so heavily politically loaded you would have thought it better written by the editor. This is presumably a way of keeping the head below the parapet.
  9. Jonathan Edwards

    Havana Syndrome: U.S. and Canadian diplomats targeted with possible weapon causing brain injury and neurological symptoms

    it would fit with the theory that this 'illness' is essentially a political construct designed to placate the bruised feelings of the intelligence/diplomatic community at a time when they are finding themselves unwanted. Sure people will have been ill. But the tweet with the MRI says "The CIA...
  10. Jonathan Edwards

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

    As indicated on another thread, NICE seem very confused about what conflict of interest means. Charles has no conflict of interest because his interest onNICE and his interest at MEA are identical - providing honest information for the benefit of PWME. For the therapists the situation is very...
  11. Jonathan Edwards

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

    Moved post I think Charles is right not to challenge this since the report is all but completed. But there seems be a serious confusion at N ICE about 'conflict of interest'. Just to note that for a psychologist or physio member of the committee the decision whether or not to recommend these...
  12. Jonathan Edwards

    Patients with Persistent Polyclonal B-Cell Lymphocytosis Share the Symptomatic Criteria of Systemic Exertion Intolerance Disease, 2021, Morizot et al

    My mental arithmetic suggests that about 35% of men with RA wouldn't have had it if they hadn't smoked and about 16% of women with RA. So in women the great majority got RA for other reasons. Since about three quarters people withRA are women the overall figure may be about 20%. That is...
  13. Jonathan Edwards

    Patients with Persistent Polyclonal B-Cell Lymphocytosis Share the Symptomatic Criteria of Systemic Exertion Intolerance Disease, 2021, Morizot et al

    I think the causal role of smoking in RA is pretty well established and it is not small, even if not as dramatic as lung cancer. I think there is a specific link between smoking, antibodies to citrullinated peptides and HLA DR4. It looks as if cigarette smoke contains innate chemical danger...
  14. Jonathan Edwards

    Patients with Persistent Polyclonal B-Cell Lymphocytosis Share the Symptomatic Criteria of Systemic Exertion Intolerance Disease, 2021, Morizot et al

    That just seems to be an observation on this pattern of B cell increase. Smoking is the most important environmental causal factor for rheumatoid arthritis so we know it does things to B cells. B cell counts in ME have a normal range in samples of about 50 cases but PPBL is said to be rare...
  15. Jonathan Edwards

    Patients with Persistent Polyclonal B-Cell Lymphocytosis Share the Symptomatic Criteria of Systemic Exertion Intolerance Disease, 2021, Morizot et al

    All but two patients with PPBL suffered from a progressive long-lasting fatigue. Yes, but well people with PPBL probably mostly never get diagnosed and people with more specific symptoms may well get them attributed to something else. I am not saying that is the whole story but working from a...
  16. Jonathan Edwards

    Patients with Persistent Polyclonal B-Cell Lymphocytosis Share the Symptomatic Criteria of Systemic Exertion Intolerance Disease, 2021, Morizot et al

    Yes, I did see the reference to Dr7 and the isochromosome which may make it worth considering an entity of genuine interest. Maybe having a lot of confused lymphocytes is one way in to ME. But ti sounded as if most people with PPBL were pretty well. There may be a clue here but the study looks...
  17. Jonathan Edwards

    Patients with Persistent Polyclonal B-Cell Lymphocytosis Share the Symptomatic Criteria of Systemic Exertion Intolerance Disease, 2021, Morizot et al

    I think there may be a major spurious element to this. PPBL seems really just to mean people with rather high B cell counts, and B cell counts are known to vary greatly without it mattering. Maybe starting off with 'patients' with PBBL is a self-fulfilling move. What if we change the definition...
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