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  1. Jonathan Edwards

    (Not a recommendation) Bath University, Volunteer for research investigating Chronic Fatigue Syndrome

    Ah, but you weren't carrying a shopping bag in a TRIAL. In a trial you would have thoughts about being a patient carrying a bag unlike th controls who would have quite different thoughts about being a normal person discovering what is like to think one is a normal person carrying a bag just or...
  2. Jonathan Edwards

    Epstein-Barr virus protein can “switch on” risk genes for autoimmune diseases

    I am puzzled - not sure what Ponting is meaning. We know the genes that when faulty confer risk for lupus and we can see why they might. We have a.lso had reasonable ideas of mechanism for nearly twenty years. This paper shows that EBNA binds to these genes but that does 'identify a...
  3. Jonathan Edwards

    The biopsychosocial model

    Bertalanffy's general systems theory is actually unscientific in the wider sense of being untestable. So it is outside even empirical models that are testable and reliable. Generalsystems theory denies that the dynamics of a system can be predicted from dynamic components. It says that the...
  4. Jonathan Edwards

    Article and documentary about ME from Finland - Yle Arenan

    Dr Polo talked at IiME. He suggested using connective tissue laxity as away to diagnoses ME. That seemed to me wrong. The problem is ME (PEM etc) not any laxity that might or might not come with it. It indicated very muddled thinking to me. Being anti-BPS is not necessarily a sign of being...
  5. Jonathan Edwards

    The biopsychosocial model

    It may not need it but I have a feeling it might get a bit more than just an article. Can't think why...
  6. Jonathan Edwards

    Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME (2018) Scheibenbogen et al

    No, @Inara, there is no guarantee that you will not get infection during th treatment before it is time to top up its. Since this is an unblinded uncontrolled study we cannot assume any improvement had anything to do with the therapy. This is not adequate evidence. And these antibodies are...
  7. Jonathan Edwards

    A couple-based psychological intervention for chronic fatigue syndrome [In progress, April 2018]

    It also sounds as if they have switched to coping CBT rather than Chaldea CBT. I wonder if this lot have actually read the PACE trial?
  8. Jonathan Edwards

    A couple-based psychological intervention for chronic fatigue syndrome [In progress, April 2018]

    But it rather sounds as if for some reason they have run out of takers ordinaryCBT. Thebastards think it is a bit too active. So they are trying a new tack? Seems the approach is 'we have no idea what will work but we will pretend we have invented a therapy and try it out to see if we can...
  9. Jonathan Edwards

    Mechanisms of chronic pain and fatigue [Trial in progress, April 2018]

    My impression is that they are looking for two groups. One with 'fibro' and one with ME.
  10. Jonathan Edwards

    Mechanisms of chronic pain and fatigue [Trial in progress, April 2018]

    What worries me here is the suggestion that 5% of the population have 'fibromyalgia'. If fibromyalgia is a distinct syndrome causing serious disability and requiring serious research I don't think it can affect more than about 0.1%. If it was more I would have met these people in clinic. If this...
  11. Jonathan Edwards

    Epstein-Barr virus protein can “switch on” risk genes for autoimmune diseases

    No, as far as we know switching B cells on is perfectly normal and the immune system is designed to do it all the time and switch them off when they have done their job. Autoimmunity is all about a loop where you switch on B cells that react to self and cannot turn them off. As far as we know...
  12. Jonathan Edwards

    Epstein-Barr virus protein can “switch on” risk genes for autoimmune diseases

    I have not looked through this in great detail but this is what I think they are saying. They find that the EBV protein EBNA binds like a transcription factor to certain human genes. Transcription factors are small proteins that turn gene usage on and off. So it is likely that EBNA turns these...
  13. Jonathan Edwards

    Epstein-Barr virus protein can “switch on” risk genes for autoimmune diseases

    Of course you are allowed to discuss stuff, @Gingergrrl. But if some of us think it is hype and nothing new surely we are allowed to say that too? What would be the point in waiting for twenty posts before suddenly saying it? The thing about science is that it isn't about whether something...
  14. Jonathan Edwards

    Epstein-Barr virus protein can “switch on” risk genes for autoimmune diseases

    The patent has nothing to do with the hyped claim of a link between EBV and autoimmunity. Four minutes of promotion is quite enough to judge hype, I can assure you.
  15. Jonathan Edwards

    What is Action for ME's current (March 2018) position on the PACE trial?

    Sounds a bit like: I think it's well known, it's not uncommon in this field and it isn't by any means restricted to this trial or to us, but people who produce commentaries which (sic, should be 'that') are not the commentaries that are desired find that they (and their employers) receive...
  16. Jonathan Edwards

    New MRT Imaging Biomarkers and Treatment With Kinetic Oscillatory Stimulation (KOS) in Nasal Cavity for ME/CFS, underway, Karolinska University

    To be double blind, they would need to stimulate the autonomic nervous system without the person noticing. That seems quite a hard thing to do. Generally speaking stimulation of the autonomic nervous system produces obvious symptoms, like diarrhoea or fainting or a cold sweat!
  17. Jonathan Edwards

    Epstein-Barr virus protein can “switch on” risk genes for autoimmune diseases

    EBA should have been EBNA, sorry. EBNA is an EBV antigen that has been around for yonks - my mum used to study it with patrick Venables. The video is hype to me. The claim is that something revolutionary has been found but there is nothing new I can see here in terms of autoimmunity. Thirty...
  18. Jonathan Edwards

    Epstein-Barr virus protein can “switch on” risk genes for autoimmune diseases

    Sadly it does not explain anything, @Gingergrrl. The fact that a protein binds to molecule that are involved in autoimmunity does not in any sense indicate that the protein causes these diseases. It is a pity that scientists hype their work so much these days. He says that they have found...
  19. Jonathan Edwards

    Epstein-Barr virus protein can “switch on” risk genes for autoimmune diseases

    SOrry, @Gingergrrl, but you have completely missed my point. There is no evidence for EBV causing autoimmunity as far as I know. It switches on pathways that also happen to be switched on in autoimmunity but that means something completely different.
  20. Jonathan Edwards

    Michael Sharpe skewered by @JohntheJack on Twitter

    Strictly speaking he is right. Activity is not an objective measure of some underlying change in an illness presumed to underly its symptoms and signs. That must be true if you can persuade ill people to be more active, which is the whole point of GET and CBT for ME. (i.e. the presumption is...
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