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  1. Jonathan Edwards

    EDS, hypermobility, and the link, if any, to ME/CFS

    The more I look at this the more it seems that the field is starting from a false presumption. In the old days EDS consisted of a group of similar looking genetic conditions that early on were identified as Mendelian dominant from family histories. So it became accepted that EDS was Mendelian...
  2. Jonathan Edwards

    A general thread on the PACE trial!

    Technically that is true but the improvement with CBT and GET is very unimpressive by any measure.
  3. Jonathan Edwards

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    It saddens me to see this sort of report @Tilly. I have known about these small vessels in bone cortex since I trained in pathology in the 1980s. The peer review system is now so broken that re-inventing of wheels is almost all there is. These vessels have nothing to do with spreading immune...
  4. Jonathan Edwards

    A general thread on the PACE trial!

    Sorry, I provided the explanatory link in my talk but left it to be inferred in the slides. The Rituximab study shows that a good going placebo response in ME roughly halves the gap between starting state and normality on a subjective scale. With the non-truncated Y axis the PACE figure is in...
  5. Jonathan Edwards

    Panic attacks or crashes?

    I am not sure I know what 'panic attacks' really are. Whenever I or a family member has had an attack of panic then we were preoccupied with what we were panicking about, not heart rate. But a sudden increase in heart rate is a common reason for panicking. So I would interpret the problem as...
  6. Jonathan Edwards

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    It starts with an assessment of mental state. That can often be worked in to initial conversation but tends to include asking questions testing memory and orientation. That is followed by an assessment of cranial nerves, including vision, smell, eye movements, facial sensation and movements and...
  7. Jonathan Edwards

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    It is generally agreed that it should be the other way around. If the reflexes are brisk then an additional positive Hoffman may indicate that the briskness is pathological. A Hoffman is an extremely poor screening test because it is very often negative when there is a pyramidal lesion. In other...
  8. Jonathan Edwards

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    I would be against an isolated Hoffman. It is positive randomly in a small proportion of normal people. A Hoffman test should be done as part of a complete neurological examination and for me is never worth doing unless the major reflexes are equivocal. So I would agree with the NIH group there...
  9. Jonathan Edwards

    Beware creating a moral panic about antivaxxers Fiona Fox The Times 2019

    Not for measles mumps and rubella. In the 1950s virtually all children in the UK went through these illnesses. By 1990 almost none did. The cessation matched the introduction of vaccination. Sanitation, nutrition and living standards are no protection against droplet borne or contact borne viruses.
  10. Jonathan Edwards

    Magical treatments and (lack of) peer review

    Rubber ducks don't work. Too much Yang - pretty much quackery in fact.
  11. Jonathan Edwards

    A general thread on the PACE trial!

    I doubt they were shocked. I suspect most of them were not at all surprised that trials of therapist delivered treatments were poorly constructed. But I think a good proportion of them took the point that things did not look very good. Certainly nobody defended the methodology. There was quite a...
  12. Jonathan Edwards

    Magical treatments and (lack of) peer review

    I wouldn't want to comment on the quality of the methodology but the ethics look fine to me. I would say it is rock solid.
  13. Jonathan Edwards

    18% patients with Multiple Sclerosis are Misdiagnosed (2019) Kaisey et al

    I agree with @Woolie that there are lots of problems with drawing conclusions from this study. MS is defined as multiple episodes of neurological deficit differing in time and site of involvement. That means that in the ideal situation everyone sent with a diagnosis of MS to a specialist centre...
  14. Jonathan Edwards

    Article: How Monsanto manipulates journalists and academics

    For me it was actually the other way around. A number of people associated with SMC and Sense about Science are people I have known for years. Reading about the interconnections and knowing what I already knew I was persuaded that the shadiness had seeped throughout - which then coloured my view...
  15. Jonathan Edwards

    A general thread on the PACE trial!

    Various people have asked me to post my Grad Round slides and I thought here would be as good a place as any.
  16. Jonathan Edwards

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Absolutely disagree. All the cases of CCI I dealt with were non-traumatic. Neurosurgeons are not usually the people to make the diagnosis. Usually a physician is involved first. Non-traumatic presentation of CCI is common and routinely diagnosed. I am not sure about that but I would expect a...
  17. Jonathan Edwards

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    I think that gets us in to our old friend expectation bias. I have a rough idea how many people on the forums have hypermobility and how many have other connective tissue problems but I think we want data from sources that will minimise bias. The most obvious thing is to look at cohorts that...
  18. Jonathan Edwards

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    I have been wondering about this for a while and am now trying to get some hard information. I have been asking around the UK research community. I do not have any specific information so far but the implication of the one specific comment I have had is that none of a large cohort of PWME have...
  19. Jonathan Edwards

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    Sorry, I had decided to leave this thread alone, but I see a specific request. All neurosurgeons in major centres can interpret the imaging. And as Dr Henderson says, the imaging is not diagnostic (although it may be if there is major structural damage as in RA or fracture). CCI is primarily...
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