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  1. Jonathan Edwards

    POTS - definition, diagnosis and symptoms

    Three points that we have discussed before may be worth mentioning. Firstly, although I do not have the sources I am sure that in looking at this I found that it is recognised that some normal people show >30 bpm increase on standing and that this is not in itself diagnostic of 'POTS'...
  2. Jonathan Edwards

    'Recovery' statistics

    If someone has said 'for most people complete recovery is unusual' then it would be good to improve the English usage. Recovery is not usual or unusual for a person - it is unusual with a population.
  3. Jonathan Edwards

    Treating medically unexplained symptoms via improving access to psychological therapy (IAPT): major limitations identified, 2020, Geraghty and Scott

    Well, they will find a report, as part of the documentation of the next ME NICE guidelines, from this expert witness making it absolutely clear that the weight of evidence for CBT and GET is that they do not work. I won't mind having to justify that in a court of law under cross examination. I...
  4. Jonathan Edwards

    New MEA Guide: ME/CFS The Ten Key Aspects of Management | 05 February 2020

    I agree that a GP is likely to be better than a psychotherapist, but only to the extent that rather than 'managing ME/CFS' they may be honest enough to realise they have no clue what to do. I cannot see the basis for saying that people should be managed by GPs. They should be managed by...
  5. Jonathan Edwards

    New MEA Guide: ME/CFS The Ten Key Aspects of Management | 05 February 2020

    I am not sure I would say that. I think if I was someone who had recently developed ME/CFS I would find it confusing. The first section seems to blur two quite different points that ought to be separate. One is that it is important to have a clear idea what is likely to be wrong (making a...
  6. Jonathan Edwards

    Trial By Error: CBT and Irritable Bowel Syndrome

    I suppose you might want to deliver CBT at a bit of a distance if there is bowel trouble about. Maybe that's why they have invented this. The Monty Python script writers would have died for this stuff.
  7. Jonathan Edwards

    Trial By Error: CBT and Irritable Bowel Syndrome

    Windgassen seems an unfortunate name for anyone who wants to be taken seriously. Especially if they are in the business of bowel trouble. And they specialise in hot air.
  8. Jonathan Edwards

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

    I was not talking about members of the profession with no dealings with ME/CFS - we know those are ignorant. I have spent the last few months getting opinions from professionals in various specialties who are deeply involved in ME/CFS care - rheumatologists, paediatricians, neurologists, other...
  9. Jonathan Edwards

    Cell-Based Blood Biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Missailidis et al Feb 2020

    The studies so far show an apparent difference but answering the question about how these findings relate to a mechanism that might make them more than just a correlation is a completely different aspect of science. Doing more controls will not take that any further. Doing another patient...
  10. Jonathan Edwards

    Cell-Based Blood Biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Missailidis et al Feb 2020

    My comment was intended to indicate that I worry when people start talking of 'nearly 100%' as if 100% were something to aim for. Almost all clinicians make this mistake. Useful biomarkers for ME/CFS are very likely to give much lower rates. I seriously worry that this sort of combined analysis...
  11. Jonathan Edwards

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

    Jen, please stop putting out statements that you are not qualified to make. It is accepted by the vast majority of medical practitioners who have dealings in this area that there is no relation between any of these diagnoses. Neurologist-surgical complications of anything other than EDS are not...
  12. Jonathan Edwards

    Trial By Error: CBT and Irritable Bowel Syndrome

    clinically and cost-effective treatments If I am not mistaken it is a direct quote from the NICE protocol for its guidelines - in which case the fault lies in the first place with NICE but in the second place with someone happy to use a meaningless phrase just because it is regulation...
  13. Jonathan Edwards

    Cell-Based Blood Biomarkers for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Missailidis et al Feb 2020

    It is worth remembering that a test with 100% sensitivity and specificity is useless, because it recognises a group that you have already recognised clinically. Tests are only useful if they indicate some underlying process that might be recognised better by the test than by clinical...
  14. Jonathan Edwards

    Bias due to a lack of blinding: a discussion

    Seems very fence sitting to me. The metaBlind paper is based on too poor a methodology to be worth considering or repeating in my view and Bastian agrees that the person she quotes as saying that has a good point. But then she ums and ahs.
  15. Jonathan Edwards

    Rituximab and placebo response

    I invented the dosing regimens for autoimmunity and I am pretty sure dosage doesn't matter very much at all. We probably give twice as much as necessary. There are all sorts of variations on the way the dosing is described but we have no real evidence it matters. If B cells are depleted, which...
  16. Jonathan Edwards

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

    I think he was but I was surprised even then that he seemed to be taking the thing seriously to some extent.
  17. Jonathan Edwards

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

    I find this quite distressing to see Dr van Elzakker apparently giving credence to this surgery. There is no science here. There are no proper trials and no data have been released publicly when they should have been long ago. I don't know what Dr Van E means about MRIs but so far I haven't...
  18. Jonathan Edwards

    Rituximab and placebo response

    Yes, an individual case is hard to make much of. It is the recurrent patterns that I think are more informative. The time course of change after treatment is something I always find more useful than just before and after. The extension of the phase 2 study seems to me most interesting in this...
  19. Jonathan Edwards

    Rituximab and placebo response

    That was the phase 3 trial, Adam. I was using the unblinded continuation of phase 2 as an indicator of a placebo response. There are no controls n this context so 'response' is in terms of relation to states at other points in time. If you have a sufficiently long pharmacodynamic monitoring...
  20. Jonathan Edwards

    Rituximab and placebo response

    I disagree. I am talking about whether or not we can make valid distinctions on a very pragmatic level. I don't think so. To me feeling optimistic despite no change in 'real health status' is the paradigmatic placebo situation. People with osteoarthritis get placebo responses to injections that...
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