Search results

  1. Jonathan Edwards

    CFS is commonly diagnosed in patients with Ehlers-Danlos syndrome hypermobility type/joint hypermobility syndrome, 2011, Castori et al.

    I don't think any of these people should be diagnosed with anything related to hypermobility since we have no idea whether that is relevant to any symptoms. The high rates of fatigue are almost certainly a reflection of the way the patients were recruited. It is a self-perpetuating story.
  2. Jonathan Edwards

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

    As I have probably said earlier I cannot see what cervical disc bulges have to do with brainstem or CSF pressure or hypermobility ... or whatever. It all seems a rag bag of unconnected spinal issues that Peter Rowe has been musing about for twenty years without any evidence.
  3. Jonathan Edwards

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

    The UK ME Biobank team found no evidence of increased hypermobility or EDS in their population sample but this is not published. Dr Kate Armin (paediatrician) has a presentation that mentions A study by Seckin from Denmark which I looked up a while back. Essentially not much link between...
  4. Jonathan Edwards

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    OK, it implies a prior history. That still makes it a different sort of diagnosis. Moreover, if the viral illness is not thought to be causal there does not seem much point in mentioning it! I thought the BPS people had it as part of the bio-. Their pseudometaphysical arguments about minds...
  5. Jonathan Edwards

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

    I see from the thread on structural spinal problems that I am out of date. This paper may cause serious harm.
  6. Jonathan Edwards

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Worth remembering that PVFS and ME are different types of diagnosis, whether or not they can be applied to the same person. PVFS is a diagnosis that implies a cause, ME is not. Medicine is full of terms of both sorts that are both useful in different situations.
  7. Jonathan Edwards

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

    Dear @Bjorn Bragee, Thanks for flagging up your paper. I appreciate your enthusiasm but I have to be frank and say that publications like this are included in what I regard as unwarranted and irresponsible. Retrospective studies with this type of methodology are guaranteed to be subject to...
  8. Jonathan Edwards

    Mast Cell Activation Syndrome (MCAS) - discussion thread

    The trouble is that if someone were to say that blue eyes go with narrow feet that would resonate with all the people with blue eyes and narrow feet. It would not resonate with people with brown eyes and narrow feet but nobody would notice. It may well be that there is an association between ME...
  9. Jonathan Edwards

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

    It begins to looks if we are dealing with a very different sort of illness. If life were only a little less complicated.
  10. Jonathan Edwards

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

    It sounds as if Dr Francis Smith of the radiology service in London is involved in the diagnosis. I will look in to options for informing the General Medical Council.
  11. Jonathan Edwards

    Chloroquine and Hydroxychloroquine as treatments for Covid-19

    The dynamics of getting drug in are a bit different. But IV is certainly given to bypass delay in absorption. Chloroquine may not have an available IV formulation on the shelf known to be safe but it may do (for falciparum malaria?). The delay in absorption is normally only about half an hour...
  12. Jonathan Edwards

    Chloroquine and Hydroxychloroquine as treatments for Covid-19

    If the therapeutic dose of a drug is 100mg in the body and the half life is a day then if you give 100mg a day the level just before taking the next dose is right (1/2 + 1/4 + 1/8 + 1/16... =1). But if the half life is 2 days you will end up with twice as much on board. You want to take 100mg...
  13. Jonathan Edwards

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

    Can someone point to the bit that says this either in Dutch or translated? Is someone in London involved. I may be able to make a complaint to a disciplinary body.
  14. Jonathan Edwards

    Chloroquine and Hydroxychloroquine as treatments for Covid-19

    That looks like a sour grapes letter from some docs losing some nice new income.
  15. Jonathan Edwards

    Chloroquine and Hydroxychloroquine as treatments for Covid-19

    As I think I pointed out earlier, because chloroquine has a long half life, if you want it to do anything much in the first day or two you have to give a lot more (maybe 50 times more). The estimated half life is about 7 weeks so for the first month you are just building up levels with standard...
  16. Jonathan Edwards

    Mast Cell Activation Syndrome (MCAS) - discussion thread

    And as we see, some patients are very keen to spread the word when it comes to the bullshit.
  17. Jonathan Edwards

    Mast Cell Activation Syndrome (MCAS) - discussion thread

    Nobody has any real idea. It isn't inflammation, I think we can be sure, because all the body's indicators of inflammation are negative. It has nothing to do with mast cells, I think we can be pretty sure, since it bears no resemblance to mast cell phenomena. Some people with ME, like the rest...
  18. Jonathan Edwards

    Mast Cell Activation Syndrome (MCAS) - discussion thread

    I don't think it is fair to criticise doctors for 'not recognising MCAS' when the great majority of the medical profession don't think there is enough to make the name useful - as I have indicated. I think doctors should take symptoms seriously and take note of skin or lung problems due to mast...
  19. Jonathan Edwards

    Mast Cell Activation Syndrome (MCAS) - discussion thread

    I think MCAS is not thought of as allergy because that makes it a 'new disease' that Dr Afrin can be an expert on. Hardly anyone except Dr Afrin actually produces literature on this. Mast cells are commonly activated in allergy (urticaria, asthma, angioedema) through IgE antibodies but they are...
  20. Jonathan Edwards

    Well-known, famous people with Covid-19 and Long Covid

    There was a picture in Evening Standard showing Boris trying to jog with personal trainer looking very miserable. I actually thought that it looked pretty dangerous. Trying to lose weight by eating less is perfectly sensible and exercising is a good idea IF YOU ARE WELL, but exercising hard...
Back
Top Bottom