Thread by @karenlubell

If Covid does deplete connective tissue, then #longhaulers should start looking a lot like patients with the connective tissue disorder Ehlers-Danlos Syndrome (EDS). One of the problems of EDS can be issues in the brain and spine that sometimes require neurosurgery. A thread:

In the book "Disjointed" -- a recent textbook comprised of essays regarding Ehlers-Danlos Syndrome -- Brown University neurosurgeon Petra Klinge has a chapter entitled "Neurosurgical Considerations."

In it, she reviews the possible neurosurgical problems of EDS patients: Craniocervical Instability and Atlantoaxial Instability, Chiari Malformation, Tethered Cord Syndrome, Spontaneous Intercranial Hypotension, and IIH.

The symptoms she lists for Craniocervical and Atlantoaxial Instability are: double vision, memory loss, cognitive changes, anxiety, depression, dizziness or vertigo, POTS, tinnitus, difficulty swallowing, vomiting, sleep apnea, respiratory abnormalities, Raynaud's phenomenon,

sensory loss, fatigue, clumsiness, abnormal gait, urinary dysfunction, difficulty speaking, irritable bowel syndrome, or gastroesophageal reflux disease. These sound a lot like the myriad, seemingly disconnected symptoms in #longcovid.

Because some patients with #longcovid are now 1) finding out they have had hypermobility symptoms pre-Covid which have gravely worsened after the virus 2) being diagnosed with Craniocervical Instability 3) display many of the seemingly unrelated symptoms listed by Dr. Klinge,

it seems imperative that research on #LongCovid start investigating this. Luckily @polybioRF is leading the way with Tesla 7 MRIs in both Long Covid patients and ME/CFS patients. polybio.org/portfolio/case…

A neurosurgeon can use radiological evidence in the form of a flex-ex MRI to measure the clivo-axial angle, the grabb-oakes angle, and the Harris measurement that, together with clinical symptoms can lead to suspicion of Craniocervial and Atlantoaxial Instability.

These are the same measurements used in "Complex Chiari," which is Chiari plus a connective tissue disorder.

In fact, this study of ME/CFS patients looked at MRI's using these measurements, and also screened for hypermobility, and found precisely what we might expect: frontiersin.org/articles/10.33…

CAVEAT and COI: I advocate for RESEARCH into this possibility, not for patients to start seeking out neurosurgery. I am a parent of a bedbound teen with CCI and Ehlers-Danlos syndrome, who has decided to hold off on surgery, as outcomes are very mixed, complications abound, &

the problems of Ehlers-Danlos go beyond the issues at the Craniocervical Junction -- there are many other problems that faulty connective tissue causes. However, there have been many EDS and ME/CFS cases in which Craniocervical Fusion was necessary and lifesaving.

I hope for alternatives to neurosurgery.

ADDING: Please note: Dr. Klinge does not do surgeries for CCI or AAI. She does do them for Occult Tethered Cord.