Acetylcholine receptor autoantibodies have been found in subsets of #MECFS and #POTS patients. This can impair autonomic nervous system function and mast cell regulation. What I did not know is that these autoantibodies can also impair collagen synthesis.🤯
Is it possible that a subset of patients have an acquired, autoimmune connective tissue disorder? Could this help explain observations of: herpesvirus reactivation, dysautonomia, MCAS, and elevated hydroxyproline/lysine in a subset of #MECFS patients, w/ w/o hypermobility?
Maybe we should all start smoking!*5️⃣ “Nicotine promotes proliferation and collagen synthesis of chondrocytes isolated from normal human and osteoarthritis patients” link.springer.com/article/10.100…
*very much kidding
**sorry—I should have said MAY impair collagen synthesis, since acetylcholine receptors play an important role in collagen synthesis, and autoimmunity to these receptors can impair their function, and thus the action of acetylcholine on the cells.
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Doctors and researchers recognize that translational medicine (a branch of science that aims to take basic research and translate it into evidence-based medical practice) is important.
We need a similar concept the recognizes the equally important act of translating patient experience and observation into testable hypotheses and, ultimately, clinical care.
If you’re a doctor, you might say “We already do that. We observe patients all the time.” That assumption is flawed.
If I could wave a magic wand:
– we would prove that intracranial hypertension (as measured by ICP bolt) is common in our pt populations, more often than not w/ normal LP opening pressures, w/o papilledema
– we would prove that occult tethered cord is common and runs in families
– we would learn whether we should untethether these kids as kids, if that might help them avoid the hell to come
– we would prove that you can get recurrent leaks that imaging will never catch
– we would understand the relationships between #MECFS#EDS#MCAS#POTS#Fibro, without which we will never be able to get to *prevention*
– every GP/PCP would know each of these diagnoses cold and could refer you to...actual specialists
I also hope the balance of research shifts to include much more investment in #LongCovid relative to acute COVID. Part of why there is so much more research on acute COVID (other than the dire urgency) is that many of these studies are done in hospital settings.
Doctors are learning an astonishing amount in short periods of time by OBSERVING their patients and constantly sharing information. When you gaslight a patient or send them out of your office, you’re saying, in essence, “nothing to see here.”
Those of us who became ill with #MECFS after other outbreaks or as sporadic cases knew #LongCovid was coming. There is no reason @CDCgov@NIH@AmerMedicalAssn or @NICEComms should not have also been—from day one—well aware, but for the profound, long-standing disinterest.
In 2016, I gave a @TEDTalks about what happened when my symptoms were dismissed as “just anxiety.”
@AmerMedicalAssn I called for doctors to be curious. To embrace a *different* set of values than the ones that currently guide the practice of medicine.
I highly recommend @bennessb’s #NEISvoid to anyone who is chronically ill. It’s a bit like #Nightingales, but way more successful! @judithheumann told me the disability rights movement started, in essence, with disabled people telling each other their stories (See: @cripcampfilm)
And that in telling each other their stories, and in taking the time to deeply listen, they were able to forge a community of people with diverse disabilities and experiences, forge a common movement identity, and share those stories with the wider world. #neisvoid
So, blind people learned how to tell the stories of autistic people, people with cerebral palsy learned how to tell the stories of deaf people, and so on. Perhaps through storytelling, people with diverse chronic illnesses can start to do the same? #NEISVoid
Petra Klinge’s talk on tethered cord syndrome blew my mind. It‘s given me a deeper understanding of how tethered cord syndrome might play a fundamental role in the patholophysiology and symptoms of a subset of #MECFS and #EDS patients. THREAD [1]
Tethered cord syndrome is a cluster of symptoms that develop when the filum terminale, a string of connective tissue that links the end of your spinal cord to your sacrum, is either inappropriately attached to your spinal canal or is too tight. [2] me-pedia.org/wiki/Tethered_…
This tethering exerts a downward force on your spinal cord. It’s why some neurosurgeons think tethered cord might predispose people to developing craniocervical instability/atlantoaxial instability (CCI/AAI) or symptomatic Chiari later in life. [3]