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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 throughout 1) Upright MRI referral by a medical practionner 2) Radiology report by a qualified radiologist 3) non surgical efforts (PT, posture, pain...

Your comment "PwME have been badly served" reads as if your statement applies to all those authors. Is that your intention? PwME have no standard of care. In all cases, it is up to the patient to decide what information is relevant in the care of one's own body and to do so critically -...

What populations of CCI patients have you looked after exactly? RA? Downs syndrome? Connective tissue disorders? traumatic brain injury following an accident? any others?

The authors include numerous medical professionals/scientific researchers, including many who have received NIH grants and are at the forefront of the ME/CFS field in the US. We will each have our own opinion and let's leave it at that.

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, Chiari and others The neurosurgeons' intake forms I have seen (Henderson + Gilete, Malik did not have any at the time) request information regarding...

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 Prof Grahame in 2019 with hypermobility. During that encounter, he helped me understand what it meant for my body, including explaining a lifetime of...

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?