Our findings indicate a systemic immune dysregulation, particularly involving the complement system and profibrotic cytokines, as a common feature in hEDS pathophysiology. These findings challenge the traditional view of hEDS as solely a connective tissue disorder and support a revised paradigm that
Proteomic discoveries in hypermobile Ehlers–Danlos syndrome reveal insights into disease pathophysiology
Hypermobile Ehlers–Danlos Syndrome (hEDS) is a poorly understood connective tissue disorder that lacks molecular diagnostic markers. This study aimed to identify proteomic signatures associated with h...
pmc.ncbi.nlm.nih.gov
July 20, 2026 at 12:01 AM
So the idea is:
- CSF flow slows down
- Autoantibodies and viral proteins get stuck near the cerebellar peduncles
- These structures begin to shrink and lose function
- Leading to many of the neurological symptoms seen in Long COVID
- CSF flow slows down
- Autoantibodies and viral proteins get stuck near the cerebellar peduncles
- These structures begin to shrink and lose function
- Leading to many of the neurological symptoms seen in Long COVID
August 20, 2025 at 12:36 PM
Here's the recording of the second Peter Rowe talk!
He covered many topics today, including thoracic outlet syndrome, Craniocervical Instability, cervical stenosis, and MCAS.
youtu.be/WaM2mPzR64w?...
He covered many topics today, including thoracic outlet syndrome, Craniocervical Instability, cervical stenosis, and MCAS.
youtu.be/WaM2mPzR64w?...
February 19, 2024 at 8:23 PM
My keystone talk on #LongCovid from last year is now online, basically 2 short talks:
From 6:00-16:20: Craniocervical instability & related issues in LC: youtu.be/53ESiGehdKY?...
16:20-21:00: Illness duration (changes & progression we see in LC over time)
youtu.be/53ESiGehdKY?...
From 6:00-16:20: Craniocervical instability & related issues in LC: youtu.be/53ESiGehdKY?...
16:20-21:00: Illness duration (changes & progression we see in LC over time)
youtu.be/53ESiGehdKY?...
Hannah Davis Keystone talk - Craniocervical instability, Illness duration
YouTube video by Patient-Led Research Collaborative
youtu.be
May 22, 2026 at 11:19 PM
Yes! Amazing differences! I have been back to working full time, in the office with more physical activity than I have done in years!
My nighttime HRV has gone from around 10 to the 30s, and the only "crashes" have been extraordinarily mild, just one day of laying around after too much yardwork.
My nighttime HRV has gone from around 10 to the 30s, and the only "crashes" have been extraordinarily mild, just one day of laying around after too much yardwork.
May 17, 2025 at 1:14 PM
CCI can drive symptoms of dysautonomia. If the patient is resistant to pharmacotherapy, it may be time to "look upstream" and find a structural aspect that could be blocking progress.
(I think this is v good advice).
(I think this is v good advice).
September 5, 2025 at 6:42 PM
#MEspine 💔
"Mr. Umurzokov chose Brown, his sisters said, because the financial aid package they offered would be the least burden on his parents...Mr. Johnson, 19, said his friend was intent on becoming a neurosurgeon to help children the way doctors once helped him."
www.nytimes.com/2025/12/15/u...
www.nytimes.com/2025/12/15/u...
December 15, 2025 at 11:01 PM
#MEspine 💔
Does anyone have recommendations for YouTube videos on EDS-literate neck and back exercises to strengthen the cervical spine, for someone with mild CCI? #longcovid #mespine #neisvoid
May 28, 2025 at 3:29 AM
Does anyone have recommendations for YouTube videos on EDS-literate neck and back exercises to strengthen the cervical spine, for someone with mild CCI? #longcovid #mespine #neisvoid
Now imagine craniocervical instability where the brain stem is getting knocked around every day for years on end…
#MESpine
#MESpine
Colgate University researchers studying 6 college football players found that even mild head impacts changed gut bacteria within 3 days.
The microbiome also drifted further from baseline over the season, hinting at cumulative effects.
www.nature.com/articles/d41...
The microbiome also drifted further from baseline over the season, hinting at cumulative effects.
www.nature.com/articles/d41...
Even mild blows to the head disrupt the microbiome
Some bacterial species became less abundant in the guts of American football players as the season progressed.
www.nature.com
May 15, 2026 at 8:09 PM
Now imagine craniocervical instability where the brain stem is getting knocked around every day for years on end…
#MESpine
#MESpine
Lots of #MEspine info throughout Dr. Yellman’s talk, thank you Jaime for the write-up!
Braden Yellman from Bateman-Horne is now talking about comorbidities of #MECFS. 🧪
Starting with hEDS (hypermobility, hypermobile Ehlers-Danlos)
Starting with hEDS (hypermobility, hypermobile Ehlers-Danlos)
September 5, 2025 at 6:54 PM
Lots of #MEspine info throughout Dr. Yellman’s talk, thank you Jaime for the write-up!
Interesting #MEspine note in this:
“We postulate that instability and obstructions at the craniocervical junction may contribute to impaired movement and production of CSF, in turn altering MMP or cytokine levels in either cluster.”
“We postulate that instability and obstructions at the craniocervical junction may contribute to impaired movement and production of CSF, in turn altering MMP or cytokine levels in either cluster.”
"Cerebrospinal fluid immune phenotyping reveals distinct immunotypes of myalgic encephalomyelitis/chronic fatigue syndrome"
"The heterogeneity in the literature suggests that individuals living with ME/CFS may suffer from overlapping but different underlying
academic.oup.com/jimmunol/adv...
"The heterogeneity in the literature suggests that individuals living with ME/CFS may suffer from overlapping but different underlying
academic.oup.com/jimmunol/adv...
Cerebrospinal fluid immune phenotyping reveals distinct immunotypes of myalgic encephalomyelitis/chronic fatigue syndrome
academic.oup.com
May 17, 2025 at 12:44 PM
Interesting #MEspine note in this:
“We postulate that instability and obstructions at the craniocervical junction may contribute to impaired movement and production of CSF, in turn altering MMP or cytokine levels in either cluster.”
“We postulate that instability and obstructions at the craniocervical junction may contribute to impaired movement and production of CSF, in turn altering MMP or cytokine levels in either cluster.”
Does anyone know of providers treating CCI non-surgically in or near NYC/Brooklyn?
PT, PRP injections, etc all very welcome. #LongCovid #mespine
PT, PRP injections, etc all very welcome. #LongCovid #mespine
June 25, 2025 at 11:16 PM
Does anyone know of providers treating CCI non-surgically in or near NYC/Brooklyn?
PT, PRP injections, etc all very welcome. #LongCovid #mespine
PT, PRP injections, etc all very welcome. #LongCovid #mespine
#MEspine pals, if you haven’t read this paper, I highly recommend it
April 25, 2025 at 1:28 AM
#MEspine pals, if you haven’t read this paper, I highly recommend it
This is a very cool opportunity to raise the profile of #MEspine issues! You can vote every day until Nov 30—just make a free account!
Additionally, you get 3 votes per day and there’s another worthy preprint related to the FUNCAP survey nominated in the same category (Medicine and Pharmacology)!
Additionally, you get 3 votes per day and there’s another worthy preprint related to the FUNCAP survey nominated in the same category (Medicine and Pharmacology)!
A pre-print that I worked on w/ other members of @renegaderesearch.bsky.social formalizing the mechanical basis hypothesis of ME/CFS has been shortlisted for a "Popular preprint of the decade" award.
If you feel so moved, a vote for us would mean a lot.
www.preprints.org/activity/awa...
If you feel so moved, a vote for us would mean a lot.
www.preprints.org/activity/awa...
www.preprints.org
October 1, 2026 at 10:35 PM
This is a very cool opportunity to raise the profile of #MEspine issues! You can vote every day until Nov 30—just make a free account!
Additionally, you get 3 votes per day and there’s another worthy preprint related to the FUNCAP survey nominated in the same category (Medicine and Pharmacology)!
Additionally, you get 3 votes per day and there’s another worthy preprint related to the FUNCAP survey nominated in the same category (Medicine and Pharmacology)!
The paper also describes (pp 18-19) hypotheses for what links hypermobility to LC, such as autoimmunity, mast cell disorders or spinal problems like CCI.
Investigating these “may shed important light on the field's understanding of the pathophysiology of Long COVID, which remains incomplete.”
Investigating these “may shed important light on the field's understanding of the pathophysiology of Long COVID, which remains incomplete.”
A new preprint confirms that generalized joint #hypermobility is a risk factor for #LongCOVID, while breaking new ground by examining risks of extreme hypermobility and whether hypermobility risk varies based on severity of initial COVID infection. www.medrxiv.org/content/10.1...
March 2, 2025 at 9:02 PM
March 22, 2026 at 7:27 PM
It's so exciting to see an #MEspine related paper published!
Good timing before the #MEspine24 (or I guess now #MEspine25) research roundtable tomorrow!
www.frontiersin.org/journals/neu...
Good timing before the #MEspine24 (or I guess now #MEspine25) research roundtable tomorrow!
www.frontiersin.org/journals/neu...
Frontiers | Comorbidities and neurosurgical interventions in a cohort with connective tissue disorders
www.frontiersin.org
January 24, 2025 at 12:22 AM
It's so exciting to see an #MEspine related paper published!
Good timing before the #MEspine24 (or I guess now #MEspine25) research roundtable tomorrow!
www.frontiersin.org/journals/neu...
Good timing before the #MEspine24 (or I guess now #MEspine25) research roundtable tomorrow!
www.frontiersin.org/journals/neu...
A great one for #MEspine!
Woohoo! Dr David Kaufman andDr. Ilene Ruhoy have made their podcast available for free on YouTube! There’s a huge wealth of knowledge and wisdom on complex chronic illness here. www.youtube.com/watch?v=LgFG...
UNRAVELED: Understanding Complex Illness: Introductory Episode 1
YouTube video by Unraveled: Understanding Complex Illness
www.youtube.com
October 20, 2024 at 3:13 PM
A great one for #MEspine!
Hello, science journalists of BlueSky! Would you like to write for New Scientist? I'm looking for people who can write 300-700 word news pieces about stories readers won't find anywhere else. Our rates start at 55p per word. More info here or DM/email me www.newscientist.com/freelancers/
September 2, 2024 at 6:11 PM
CSF leak symptoms 4 wks since #SFT surgery; worsened ME/CFS & CCI - bedbound.
Now running a fever on max Advil.
Potential infection.
Any normal person would be at the ER. I have the horrible task of balancing potential spine/brain infection w worsening other conditions.
Now running a fever on max Advil.
Potential infection.
Any normal person would be at the ER. I have the horrible task of balancing potential spine/brain infection w worsening other conditions.
April 27, 2025 at 6:23 AM
Current reading that's potentially relevant to #MEspine and my own #IIH :
Article on various ways the internal jugular vein can be squashed by the surrounding anatomy
#NEISvoid
Article on various ways the internal jugular vein can be squashed by the surrounding anatomy
#NEISvoid
Internal Jugular Vein Entrapment: An Underrecognized Cause of Facial Pain
Background The cause of facial pain often remains unknown after ruling out dental disorders and arterial compression of the trigeminal nerve. New pathologic models and treatment options are needed. ...
doi.org
August 24, 2026 at 7:02 PM
This has several important themes. #MEspine, CCI/AAI, #EDS, #psychedelics, viral latency, and relationship to mitochondria. Bet this is a sizeable subset of #MEcfs.
Just read this very lucid and digestible article on the similarities between ME/CFS, Long Covid and concussion. Brings together various threads in an easy to understand way: www.bbc.com/future/artic...
How Long Concussion could offer new insights into Long Covid
There are striking parallels between the two syndromes – and scientists hope the link could help to unravel the mysteries of both.
www.bbc.com
June 7, 2024 at 10:39 PM
This has several important themes. #MEspine, CCI/AAI, #EDS, #psychedelics, viral latency, and relationship to mitochondria. Bet this is a sizeable subset of #MEcfs.
For the first time (I know of) I had an ECG done during an intracranial hypertension flare, and it had prolonged QTs
Cardiologist said CSF leaks/decreased fluid from IH may be why and need more electrolytes (levels in range but on low side) to compensate for it #MESpine
Cardiologist said CSF leaks/decreased fluid from IH may be why and need more electrolytes (levels in range but on low side) to compensate for it #MESpine
January 17, 2025 at 6:31 PM
For the first time (I know of) I had an ECG done during an intracranial hypertension flare, and it had prolonged QTs
Cardiologist said CSF leaks/decreased fluid from IH may be why and need more electrolytes (levels in range but on low side) to compensate for it #MESpine
Cardiologist said CSF leaks/decreased fluid from IH may be why and need more electrolytes (levels in range but on low side) to compensate for it #MESpine