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  1. Jonathan Edwards

    A general thread on the PACE trial!

    I find this strangely arm's-length sentence intriguing: This was a classic demonstration of the importance of transparency: critics of the study (of whom there are many) had to make a Freedom of Information request and wait years to see the data — at which point they argued that their...
  2. Jonathan Edwards

    USA: InCellDx Dr Patterson - New lab service offering cytokine tests to Covid longhaulers

    There is never any room for 'benefit of the doubt' in science. So much work in science is flawed by poor methodology and over enthusiasm. Unless you assume that work may be hyped before you read you will find yourself taken in by all sorts of empty stuff. But generally it is not too difficult...
  3. Jonathan Edwards

    Fibromyalgia Detection Based on EEG Connectivity Patterns, 2021, Martin-Brufau et al

    So where are the data please, mate? I think you have to be a bit thick to write that sentence.
  4. Jonathan Edwards

    USA: InCellDx Dr Patterson - New lab service offering cytokine tests to Covid longhaulers

    It will only ramp up if people give it attention - so why give it exposure?
  5. Jonathan Edwards

    Interventions that manipulate how patients report symptoms as a separate form of bias

    The Benedetti article is interesting in that it is clear that Benedetti himself would like to make use of placebos. One might say that he can hardly complain if the quacks want to as well! I think the parallel with the BPS people, who also feel that it is OK for them to make use of the placebo...
  6. Jonathan Edwards

    USA: InCellDx Dr Patterson - New lab service offering cytokine tests to Covid longhaulers

    I cannot see any point in following empty marketing like this. When there is some science I will take a look.
  7. Jonathan Edwards

    Intramuscular Pressure is Almost Three Times Higher in Fibromyalgia Patients..., 2020, Katz et al

    @Hutan, It would take a few thousand words to fully explain the problem here. But in simple terms human tissues are solids. Hydrostatic pressures are properties of liquids. If you try to ascribe hydrostatic pressures to solids you have to be very very careful and know exactly what you are doing...
  8. Jonathan Edwards

    How pandemics strengthen links between viruses and autoimmunity

    The quoted abstract illustrates well how poorly immunologists understand their own terminology (and also the pathology of synovium, which at one time was my special expertise). A dysregulated inflammatory response is not' autoimmune' unless there is actual immune reactivity to self, as there is...
  9. Jonathan Edwards

    How pandemics strengthen links between viruses and autoimmunity

    Read my paper with Jo Cambridge in Immunology 1999! B cells operate on a basis of random generation of antibody types with a chain reaction positive feedback loop for mass production when needed. To explain autoimmunity you need to find a way to trick the chain reaction into activating for self...
  10. Jonathan Edwards

    How pandemics strengthen links between viruses and autoimmunity

    I had not actually read the article but it is the tired old old story I was familiar with from my student days which my 1999 article in Immunology with Jo Cambridge should have finally put to bed. There is not a scrap of evidence for it. Rather than being at the cutting edge of immunology people...
  11. Jonathan Edwards

    How pandemics strengthen links between viruses and autoimmunity

    Let me try a slightly different abstract. Introduction: Viruses might be linked to autoimmunity. Methods: So we allowed at least 193,668,196 people (so far) to get infected with a virus and waited to see if there was a flush of autoimmune disease. Results: none seemed to turn up. Conclusion...
  12. Jonathan Edwards

    Open US NIH-funded mega project, All of Us, to characterize and track the health of one million people in the US

    The UK Biobank seems to be a useful resource as far as I can see. However, any data gathering project based self-registration through the net has major disadvantages in comparison to traditional population based epidemiological studies. I continue to have significant concerns about cohort bias...
  13. Jonathan Edwards

    Open US NIH-funded mega project, All of Us, to characterize and track the health of one million people in the US

    The comment re Lyme was from an ME association and I have no view on that. The political aspects for me are more general.
  14. Jonathan Edwards

    United Kingdom: NIHR Long Covid research funding decisions 2021-2

    Absolutely agree, but NICE has come close to changing things by debarring the 'international experts' from contributing and making use of the common sense of citizen scientists. The key point is that science does not come from those who share a received wisdom, but from those who are one step...
  15. Jonathan Edwards

    United Kingdom: NIHR Long Covid research funding decisions 2021-2

    Yes but you cannot convince stupid people of what makes sense. They don't follow. And they are in the majority. I was there for thirty years! You don;'t do things this way. As the saying goes if you want something done best do it yourself. NIHR was specifically set up to lower the standards...
  16. Jonathan Edwards

    United Kingdom: NIHR Long Covid research funding decisions 2021-2

    I give up really. Everything is drivel now. Stakeholder is a completely inappropriate term in this context. There are people who need help and people who might be able to help given the opportunity and a whole load of people with vested interests getting in the way. There is no commonality...
  17. Jonathan Edwards

    United Kingdom: NIHR Long Covid research funding decisions 2021-2

    I am afraid, @Hutan, that this: “We have brought together experts from across the UK to work with international colleagues from the World Health Organisation and large international COVID studies, such as the ISARIC consortium, to achieve consensus on the design of research studies addressing...
  18. Jonathan Edwards

    Open US NIH-funded mega project, All of Us, to characterize and track the health of one million people in the US

    For once I agree with @duncan. The allofus.nih.gov webpage looks like pure politics to me. I cannot see any point in PWME contributing to a project that is not properly epidemiologically structured. This looks like simple window dressing driven by some people building empires in 'precision...
  19. Jonathan Edwards

    What is fatigue?

    There is a medical sense of that sort - as in so-called fatigue-fracture when the shin bone cracks after repeated use. But I think that just illustrates how many different usages there are. There may be a lot of confusion over ME symptoms but for both patients and doctors fatigue is a symptom...
  20. Jonathan Edwards

    What is fatigue?

    You seem to be missing the point @Snow Leopard that language is messy and complicated. In science terms of have multiple meanings in different language structure contexts. Yes, of course the root fatigue- is used for the sorts of phenomena you describe and as a compound noun like peripheral...
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