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Note: I am not copying these guys with a desire for anyone who follows me to blast them out (keep it civil), but rather to invite you to convey, through the lens of your personal experience, the danger of the status quo.
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A vascular neurosurgeon recently found empty sella, excess fluid behind my eyes, and signs suggestive of bilateral transverse cerebral venous stenosis. I find it truly frightening that the abnormalities in my MRI were missed.
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In case you're curious: a healthy person's MRI (right); my abnormal MRI and a pituitary pancake (left). Neurologists: do NOT believe a clean MRI report just because you get a clean MRI report.
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US patients have so much more access to imaging and specialist testing than those in the NHS and STILL these issues are missed. How much worse is it for patients in the UK?
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whether the issue is low pressure or high pressure, I've met more and more people in the last few months who have found substantial relief through surgery.
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These complications are very common in patients with EDS, and are happening in many ME patients, even though they don't meet the EDS criteria.
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I urge you to read these stories and connect with ME/CFS, EDS, POTS and MCAD researchers in the US.
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Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis link.springer.com/article/10.118
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Venous sinus stenting for reduction of intracranial pressure in IIH: a prospective pilot study (some of these subjects are EDS patients) thejns.org/doi/abs/10.317
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A New Disease Cluster: Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome, and Ehlers-Danlos Syndrome jacionline.org/article/S0091-
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Mast Cell Activation May Underlie 'Chronic Fatigue Syndrome'
The Mystery Headache: Migraine, Positional Headache, Spinal Fluid Leak?
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"Chiari Malformation & the Autonomic System: The Connection"
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So in sum, there are patients who (for whatever reason) after a viral insult or a physical trauma develop intracranial hyper/hypotension of varying stripes, that contribute to the symptoms of ME/EDS/POTS/MCAS, and that are getting missed left and right
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I dream of a day when everyone in the UK who presents with the symptoms of ME is getting a tilt-table (or poor man's tilt table/lean test) to diagnose POTS, is properly screened for EDS...
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...and has access to the right imaging and expert interpretation of that imaging (the radiologists missed so much!) to diagnose potentially treatable issues that are contributing to their symptoms.
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You both (and your colleagues who are not on Twitter) have a major potential, positive role to play in making sure that day comes about.
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Even if CBT/GET works for some people, there are very clearly patients who have no business receiving those treatments who are getting them prescribed routinely.
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Diamox, Valcyte, Valtrex, Mestinon, Florinef, Beta-Blockers, Low-Dose Naltrexone, next gen anti-inflammatories – these are interventions can help some patients live MUCH a higher quality of life. Why don't NHS doctors have these in their toolkit?
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This: twitter.com/MBVanElzakker/ Let's figure out how we can get doctors more tools and how can do the work to find the specific cause of every patient's symptoms.
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Replying to @jenbrea
Helped a kid diagnosed with CFS get better; discovered that his appendix was filled with herpesvirus. Recovered since having it removed. Imagine telling him to jump into a circle labeled "STOP" whenever his symptoms flared. Absolute trash.
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