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  1. Jonathan Edwards

    "ME/CFS Funding Worsens As NIH Maintains Status Quo"

    We have not eliminated B cell autoimmunity but I agree that it is not looking very likely. T cell autoimmunity does not exist very much as far as I can see. There is a rare genetic condition called AIR where T cells react to self but in general autoimmunity is not associated with any evidence...
  2. Jonathan Edwards

    Fight to Cure Lupus: A Proof of Concept in an Animal Model, 2019

    Yes. Whereas most autoimmune diseases work through one or two linked antibodies lupus has a whole family of autoantibodies. The central ones are antibodies to nuclear proteins and DNA - antinuclear antibodies. The secondary ones include antibodies to platelets, to phospholipid, to lymphocytes...
  3. Jonathan Edwards

    Fight to Cure Lupus: A Proof of Concept in an Animal Model, 2019

    Not like ME at all. There is well established pathology. There are pretty reliable blood tests. And there are very effective treatments for a lot of the problems although not all. We understand the mechanism reasonably well. There are animal models that reflect some of the steps in the chain but...
  4. Jonathan Edwards

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    I think this is right. Researchers cannot go searching through records of people who have not volunteered.
  5. Jonathan Edwards

    When to see a doctor about loose stools?

    I hate to say this but you are asking for medical advice. I could give all sorts of rules of thumb but they are all easily enough misinterpreted. The only answer is that if you are worried you should see your doctor. Forums can so easily become places where people falsely reassure each other or...
  6. Jonathan Edwards

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    0.2% of 60million makes 120,000 to me. That is based on diagnosed cases. No doubt there will be more undiagnosed cases but goodness knows how many.
  7. Jonathan Edwards

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    I think it would be pretty unlikely. If a signal came up in one population another population with a Biobank would certainly be a good place to get confirmation.
  8. Jonathan Edwards

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    It slightly surprised me at the time but I have a pretty clear recollection of it. Somebody will remember. I think it was the prevalence study done by questionnaire that Jason did a good while ago.
  9. Jonathan Edwards

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    I forget but I think Lenny Jason was involved. There was a US study that showed that something like 80% of people who had been diagnosed with ME or CFS by a doctor did not fit criteria. I suspect that in the UK ME Biobank study the discrepancy was rathe less.
  10. Jonathan Edwards

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    Yes, the controls are already fixed and that is why it is so crucial to recruit from a matched population.
  11. Jonathan Edwards

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    You don't get a signal linked to being English if you control within an English population. Anything linked to being English cancels out. The study only looks at differences. You might only discover the cause of ME/CFS in England but nobody is going to complain if something is actually found -...
  12. Jonathan Edwards

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    No, that would be a disaster because it would bring in all sorts of genetic association from friends and relations. Studies like this have to be as free as possible from any connection between subjects that might lead to bias. The key point is that any bias, however small, due to non-random...
  13. Jonathan Edwards

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    If I remember rightly the US study that looked at ME/CFS diagnosis by physician indicated that physicians over diagnose ME/CFS by about five fold. Patients' responses to questionnaires were more reliable and produced a smaller cohort. I assume that recruitment will be done on the basis of...
  14. Jonathan Edwards

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    From my perspective this would be an extremely bad idea. If I were reviewing the grant proposal I would not be happy with bringing in an unknown number of subjects from other countries. The problem is that genetic studies are only any use if control groups are extremely well matched for all...
  15. Jonathan Edwards

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    This may have been covered but when asking people to show interest is there a box for saying how they came to know about the project. It is always an irritating question but it might be telling.
  16. Jonathan Edwards

    Pilot assessment of low NK cell-mediated ADCC and FCGR3A genetics in(ME/CFS):.. low ADCC unsuitable as diagnostic biomarker: Sung, Bateman et al 2019

    I have not looked at the stud details thoroughly but I wonder if there may be some selection bias in the finding of a difference between ME families and controls. These are families with multiple ME cases - which are not a representative sample of ME per se. The Fc receptor polymorphisms may...
  17. Jonathan Edwards

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    I think the preferred estimate is 0.2%, which would be 120,000 and that figure comes from diagnosed cases, not from trawling around finding undiagnosed people. So that means that 120,000 should already have a diagnosis.
  18. Jonathan Edwards

    Researcher Interactions Patient Representative Reports from Dr Karl Morten's collaborative group, Oxford, UK

    These look like phoney commercial set ups peddling pseudoscience. Do we really want our research to involve such outfits?
  19. Jonathan Edwards

    UK Genome Wide Association Study (GWAS) project - draft website goes live, feedback sought on recruitment plan, and updates

    That is an interesting way of trying to gauge the minimum number of people who are aware of online material on ME. I say minimum in that if someone has liked a site they must exist, even if maybe some likes are from friends and relations. The interesting question raised for me by this is the...
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