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Jennifer Brea @jenbrea
, 11 tweets, 6 min read Read on Twitter
This study looked at 270 people with #fibro, a condition that receives even less funding than #mecfs and is still ridiculed by many MDs. 46% had spinal stenosis and 20% had Chiari malformation!! #Nightingales…
The authors conclude: “We recommend detailed neurological evaluation of patients with #fibromyalgia in order to exclude cervical myelopathy, a potentially treatable condition.” #Nightingales
There is a strong case right here that medicine is massively failing these patients by denying access to diagnosis and care *that it is already quite capable of providing.* #Nightingales
A second study found 71% of #fibro patients had cervical spinal cord compression… #Nightingales
I once did an informal Twitter poll and roughly 50% of my followers (with #mecfs) had never even had an MRI of the brain, let alone the spine. We need to fight for more research funding, yes (and I would argue, do similar studies in an #mecfs cohort). #Nightingales
BUT we also need to fight for access to the brain imaging, neurological investigation, and expert care we should already have access to. #Nightingales
Medicine already has the tools to diagnose (and treat!) craniocervical junction disorders like stenosis, Chiari malformation and craniocervical instability. #Nightingales
These can all cause brainstem compression or deformation, from which arise the symptoms of “cervicomedullary syndrome” (dysautonomia, apnea, pain, weakness, numbness), symptoms quite similar to brainstem infection or inflammation. #Nightingales
Instead of ruling out these diagnoses, men and women (but mainly women—87% of subjects in the first #fibro study are women) are dismissed, told “it’s all in your head,” diagnosed with conversion disorder, and left to languish. #Nightingales
So research, yes, we fight for actual, equitable investment in research. But we also must fight for access to medicine, goddamn. #Nightingales
Thank you @jeff_says_that for the references (follow him, guys!) #Nightingales
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