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  1. Jnoelle
    Post

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

    I am not sure why you believe that one goes from an upright MRI to unnecessary surgery. Can you explain? I see it as 0) ongoing patient education...
    Post by: Jnoelle, Sep 3, 2020 in forum: ME/CFS research
  2. Jnoelle
    Post

    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 applies to all those authors. Is that your intention? PwME have no...
    Post by: Jnoelle, Sep 2, 2020 in forum: ME/CFS research
  3. Jnoelle
    Post

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

    What populations of CCI patients have you looked after exactly? RA? Downs syndrome? Connective tissue disorders? traumatic brain injury following...
    Post by: Jnoelle, Sep 1, 2020 in forum: ME/CFS research
  4. Jnoelle
    Post

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

    The authors include numerous medical professionals/scientific researchers, including many who have received NIH grants and are at the forefront of...
    Post by: Jnoelle, Sep 1, 2020 in forum: ME/CFS research
  5. Jnoelle
    Post

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

    I have ME (dx by Dr Weir). A group of US ME specialists have published this which lists, among differential diagnoses on p3: CCI, CSF leak,...
    Post by: Jnoelle, Sep 1, 2020 in forum: ME/CFS research
  6. Jnoelle
    Post

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

    I find your statement "I never met a patient who I thought this diagnosis would be useful for" unfortunate for your patients. I was diagnosed by...
    Post by: Jnoelle, Sep 1, 2020 in forum: ME/CFS research
  7. Jnoelle
    Post

    UK: Locations that offer CPET/VO2max testing

    Has anyone found a location in London that gets it ? Meaning one that could provide the 2 day CPET + analysis/interpretation as it relates to ME?
    Post by: Jnoelle, Jul 6, 2019 in forum: Laboratory and genetic testing, medical imaging
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