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  1. Jonathan Edwards

    Format of NICE stakeholder meeting?

    My assumption is that during the meeting I will have a reasonable chance to voice one important point and perhaps one or two more if very lucky. I am happy to receive suggestions. However, I am working on the basis that the points this group will want to make are: 1. The evidence for the...
  2. Jonathan Edwards

    Format of NICE stakeholder meeting?

    If there is one I guess it is to tick the box of public involvement. But that is not such a silly objective and with luck it will mean that some people come away a bit wiser.
  3. Jonathan Edwards

    Nature: A reboot for chronic fatigue syndrome research

    A very interesting thought. I am not sure that it would ever be taken on. You would need something that gives people the same sort of nausea as cyclo. Referees would question whether maybe the patients could tell the difference. Probably the more plausible option is to do a dose response...
  4. Jonathan Edwards

    3 Dec 2017 | Interview with Nancy Klimas on 'Unrest'

    It was not that they were not established as clinical tests but that they were not established as reproducible research findings that we can take as established fact. I have not sen the video and will try to do that now.
  5. Jonathan Edwards

    I was diagnosed with a rare autoimmune disease called "Relapsing Polychondritis"

    I think it is likely that ME/CFS symptoms are due to whatever is causing RP - i.e. part of that illness. It seems to me a good example of how immune diseases can show themselves mostly as just feeling terrible, with the specific symptoms and signs in particular organs being hard to track down at...
  6. Jonathan Edwards

    3 Dec 2017 | Interview with Nancy Klimas on 'Unrest'

    I can't say that I really recognise any of those as being established findings. I worry when lists like this are put up as if they were agreed findings. For cytokines the findings have been all over the place. I do not really believe in the Th1/Th2 business and TNF is put in the Th1 group so I...
  7. Jonathan Edwards

    Format of NICE stakeholder meeting?

    It looks fairly dire. The opening bureaucratic talks will take an hour. There will then be table discussions but it seems there will be no general discussion. Presumably there will just be hurried bullet point feedback from each table, probably from the NICE representatives. It looks a bit...
  8. Jonathan Edwards

    Unrest - reviews and general articles

    You may not be aware that I am a retired professor of immunology, @Seven. NK function tests are well established but nobody knows what they really mean. In the 1980s it was hoped that they would tell us something clinically useful but in the subsequent thirty years most immunologists have...
  9. Jonathan Edwards

    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    You are right that there is a failure of accountability, but it is interesting to see where it occurs. All consultant physicians pretty much do have to belong to an overseeing organisation, in order to get entry to which you need to have a basic understanding of how to design a study. They have...
  10. Jonathan Edwards

    Unrest - reviews and general articles

    The point that Valentijn is making is that whatever reaction you are describing it is not a 'herx'. Herx is short for Jarisch-Herxheimer and is a technical term for a reaction to material released from dying bacterial cells. Viruses are not cells and are not in any relevant sense alive or dead...
  11. Jonathan Edwards

    How does your immune system work? New Ted Ed talk

    T helper cells (CD4+) are specialised in that they recognise peptide fragments of antigens mostly derived from outside cells, that are presented to them in association with HLA-D (MHC ClassII) rather than HLA-A, B or C (Class I). CD8+ cells tend to recognise antigens formalised cells. What the...
  12. Jonathan Edwards

    How does your immune system work? New Ted Ed talk

    As a fun introduction to the basic ideas I agree this is pretty clever. My only reservation, for those who might want to try to use it to understand specific illnesses, is that it does not give a clear idea of which compartments which event is happening in. For instance, it does not make it...
  13. Jonathan Edwards

    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    I think you may have a rosy picture of what scientists are like these days. Almost everyone in science is motivated by promotion and money - because they are told by their superiors that that is what they should be motivated by. I have been told that many times. All that mattered was my returns...
  14. Jonathan Edwards

    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    Of course people who do not think outside the conventional dogma box achieve nothing because science is all about thinking outside that box, and clinicians are as bad as any other on that. But I was not arguing that there are no useless clinical scientists. My point is just that most of the...
  15. Jonathan Edwards

    "Time for Unrest": ME article by Nathalie Wright

    I think he is right to point out that there is probably more evidence for schizophrenia being a neurological disease than ME/CFS. That seems to suggest that 'psychiatric' illnesses are just as neurological so if ME/CFS is going to be called neurological why not schizophrenia or bipolar disorder...
  16. Jonathan Edwards

    Nature: A reboot for chronic fatigue syndrome research

    I cannot see any misrepresentation in the article -just an account of what has happened. David Tuller did write a blog. The CDC has changed its guidelines and NICE are reviewing. Letters have been written to journals. The article expresses no opinion on the quality of PACE. Nothing is...
  17. Jonathan Edwards

    "Time for Unrest": ME article by Nathalie Wright

    There is actually a gain of truth in Wessely's argument in that letter. But by golly does he screw up on the way he develops that argument. And again, he seems to have forgotten who this is all for - some annoying people called patients. Not in fact, psychiatrists, so that they can mark out...
  18. Jonathan Edwards

    Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017

    Actually the opposite applies, really. Unless you see patients every week it is very difficult to know what the real questions are in medical research. I went on doing three clinics a week until I retired. If you do not see patients you are likely to end up studying rats or something equally...
  19. Jonathan Edwards

    "Time for Unrest": ME article by Nathalie Wright

    "One of the core principles of the “Recovery Movement”, currently the dominant paradigm in managing long term conditions and disability, is avoiding this." This is the worst sort of sound bite blather we get these days. Who cares what is a 'dominant paradigm'. Is the right thing to think what...
  20. Jonathan Edwards

    "Fighting over fatigue", Interesting long read on ME by Mosaic, who are funded by Wellcome

    I seem to remember after being interviewed on the phone that I thought the result would be a standard spin piece. The author seemed to find it hard to believe that my critical comments could be realistic. Why would they do that? sort of thing. The end result actually looks a bit like what good...
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