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  1. Jonathan Edwards

    One Day Conference on clinical aspects of Functional Symptom Disorders: 11 September 2020

    If anyone at my old institution is reading, I am disappointed. This meeting is organised by UCL, or at least the Institute of Child Health Part and the department of psychiatry part of that. (Prof Heyman, whom I have never heard of). This is the 2nd London International One Day Conference on...
  2. Jonathan Edwards

    CBT for CFS Therapist Manual PAEDIATRIC CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK Loades, M.E. & Starbuck, J. | 2020

    If you've tried putting a home made Covid mask on round your glasses, baseball cap and hearing aids you will know why those ones were omitted!
  3. Jonathan Edwards

    Coronavirus - worldwide spread and control

    It seems to me a remarkably bigoted and stupid analysis to be honest. He just wants to pretend there isn't a problem. Ask my niece who works in A?E if there is a problem. The problem is that there was no initial closure of air traffic that would have aborted the entire European epidemic. As it...
  4. Jonathan Edwards

    Demographic and health-related factors associated with reduced work functioning in people with moderate [MUPS], 2020, van Tilburg et al

    I read this as: We took a load of patients who we thought were a bit nutty and lazy who kept us in work by coming along to our rehab programme. We tested them on all sorts of things to do with being nuts and lazy. We found that worse people were worse. But, annoyingly, not much worse, so we...
  5. Jonathan Edwards

    The use of the labels ME, CFS, ME/CFS

    To be honest @Diane O'Leary, I cannot see the point in this sort of discussion. It irritates clinicians and researchers of all types. They just want to get on with looking after people or doing research and they know which people they are dealing with. The history is I think unhelpful. Wessely...
  6. Jonathan Edwards

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

    The problem as I see it is that there is really very little quality control in neurosurgery in general. I was offered a massive 2 hr operation to deal with my chronic lumbo-sacral radiculopathy (originally. from a disc) despite the MRI showing no root compression. When I sat down and thought...
  7. Jonathan Edwards

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

    I would pick out James Baraniuk as someone with deep understanding of both clinical and science issues. I think his chief interest is Gulf War Syndrome.
  8. Jonathan Edwards

    Recurrent sinus arythmias?

    Sinus arrhythmia means that the heart conducting systems are linking together normally but beats are not coming exactly as regularly as clockwork. The usual reason for this is relatively deep breathing - respiratory sinus arrhythmia, which might be described as 'recurrent' since the heart beat...
  9. Jonathan Edwards

    Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

    My understanding is that 1. There is only one centre doing upright MRI in the UK for this indication. 2. This centre takes referrals from other European countries with a view to referral for surgery 3. The view amongst neuroradiologists in the UK in general is that upright MRI is not useful. 4...
  10. Jonathan Edwards

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

    That would certainly make sense for a degenerate unstable disc with protrusion.
  11. Jonathan Edwards

    Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

    It might be worth reminding Dr Van Elzakker that I am not a general MD but a professor of connective tissue medicine. I spent ten years re-writing synovial fluid dynamics so am familiar with the detail of fluid compartment physiology. The points Dr v E raises are not relevant. The analysis I...
  12. Jonathan Edwards

    Mast Cell Activation Syndrome (MCAS) - discussion thread

    I do not know Dr Rowe, other than as someone that Dr Grahame often quoted. Rowe and colleagues wrote a paper in 1999 suggesting a link between EDS and chronic fatigue which may be the basis of the whole problem. The paper is a small case series and on close inspection the evidence looks pretty...
  13. Jonathan Edwards

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

    Responding to @Jnoelle on another thread here as requested by mods. *Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al Your comment "PwME have been badly served" reads as if your statement...
  14. Jonathan Edwards

    Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

    There has been a subtle drift from the Chiari/EDS world to ME via Henderson's 'cervical medullary syndrome'.
  15. Jonathan Edwards

    Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

    And there lies the point of the story I think. It all dates back to the reason for Peter Rowe's paper in around 2000, or maybe even 1990.
  16. Jonathan Edwards

    CBT for CFS Therapist Manual PAEDIATRIC CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK Loades, M.E. & Starbuck, J. | 2020

    We are going through a phase where we are being reminded of all sorts of people's legitimate sensitivities, and rightly so but can anyone respond to this with anything other than cringing?
  17. Jonathan Edwards

    Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

    I am not talking about studies, merely about clinical experience and the point is that if people had RA and symptoms of ME they would need to be seen by somebody. Sorry but this does not make sense to me. Clinical features are paramount much of the time. But the surgeons are doing a bait and...
  18. Jonathan Edwards

    CBT for CFS Therapist Manual PAEDIATRIC CFS TEAM, ROYAL UNITED HOSPITAL, BATH, UK Loades, M.E. & Starbuck, J. | 2020

    It is interesting that this sort of muddled drivel is still being put out. I have not read all of it yet but will probably go back and look at more. It may need to change a bit in 2021! There seems to be no reference to the PACE trial but I am not sure there are any references to any formal...
  19. Jonathan Edwards

    Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

    Very good point. For AAI it is forward that is the problem. Backwards the abnormal AA gap closes to normal position. I had assumed that the surgeons were also worried about forward slip for CCI because that is what the CXA seems to me to measure - excessive forward tilt. Lots of normal people...
  20. Jonathan Edwards

    Signs of Intracranial Hypertension, Hypermobility and Craniocervical Obstructions in patients with ME/CFS (Pre-print 2019/published 2020) Bragée et al

    I realise that the terminology for upper cervical problems may be ambiguous and I may have confused people, including myself. I have read CCI to indicate problems from occiput to C2 (axis), maybe because this is the segment fused in most surgery and occiput-C1(atlas)-C2 (axis) tends to be seen...
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