#MEcfs #LongCovid it's a faff to sign up, but it's worth 10mins for the advocacy. Two other papers have >300 votes, this is just over 100. Getting medicine to listen re this model is near impossible, so any recognition is gold dust. #MEspine #IACC
@renegaderesearch.bsky.social Mechanical Basis Preprint: Vote daily through 11/30 hypothesis proposing connective-tissue changes, CCI & brainstem dysfunction may contribute to ME/CFS/LC. www.preprints.org/activity/awa...
www.preprints.org
October 3, 2026 at 9:15 AM
#MEcfs #LongCovid it's a faff to sign up, but it's worth 10mins for the advocacy. Two other papers have >300 votes, this is just over 100. Getting medicine to listen re this model is near impossible, so any recognition is gold dust. #MEspine #IACC
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)!
It's a faff to sign up and find the piece, but worth spending 10mins - every little bit of exposure, every press release that mentions the model, will help normalise discussion of the topic; particularly, key for idiot clinicians who refuse to listen to #pwME #MEcfs
You can vote up to 3 times a day per category until Nov. 30! And vote for the same preprint once a day
Vote for "A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long Covid" under "Medicine and Pharmacology" here: www.preprints.org/activity/awa...
#LongCovid #MECFS
Vote for "A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long Covid" under "Medicine and Pharmacology" here: www.preprints.org/activity/awa...
#LongCovid #MECFS
September 7, 2026 at 8:58 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
New preprint by some big names in #EDS #MECFS #LongCovid #MESpine spaces proposing new framework/spectrum called Neuro-EDS.
(Makes total sense! We all know there’s so much overlap, so should the medical field!)
www.preprints.org/manuscript/2...
(Makes total sense! We all know there’s so much overlap, so should the medical field!)
www.preprints.org/manuscript/2...
August 22, 2026 at 4:44 PM
New preprint by some big names in #EDS #MECFS #LongCovid #MESpine spaces proposing new framework/spectrum called Neuro-EDS.
(Makes total sense! We all know there’s so much overlap, so should the medical field!)
www.preprints.org/manuscript/2...
(Makes total sense! We all know there’s so much overlap, so should the medical field!)
www.preprints.org/manuscript/2...
A common and highly distressing, but poorly understood symptom in Long COVID is this bizarre feeling of "internal vibrations" - this new paper makes me wonder if perhaps it's a sign of brainstem dysfunction? #MESpine
www.nature.com/articles/s41...
www.nature.com/articles/s41...
Emergence of a brainstem somatosensory tonotopic map for substrate vibration - Nature Neuroscience
Lee et al. show that the development of the somatotopic map and the tonotopic map for substrate vibration is shaped by the intrinsic distribution of cutaneous end organs and selective dendritic integr...
www.nature.com
November 21, 2024 at 1:29 AM
A common and highly distressing, but poorly understood symptom in Long COVID is this bizarre feeling of "internal vibrations" - this new paper makes me wonder if perhaps it's a sign of brainstem dysfunction? #MESpine
www.nature.com/articles/s41...
www.nature.com/articles/s41...
My suspected TSCS (tethered spinal cord) symptoms are worsening, I now get a painful twinge at the crown of my head with relatively modest neck movements.
This leaves me with a yucky headache sensation and additional fatigue.
#MESPine #TSCS #TetheredSpinalCord #MECFS
This leaves me with a yucky headache sensation and additional fatigue.
#MESPine #TSCS #TetheredSpinalCord #MECFS
May 6, 2025 at 8:03 AM
My suspected TSCS (tethered spinal cord) symptoms are worsening, I now get a painful twinge at the crown of my head with relatively modest neck movements.
This leaves me with a yucky headache sensation and additional fatigue.
#MESPine #TSCS #TetheredSpinalCord #MECFS
This leaves me with a yucky headache sensation and additional fatigue.
#MESPine #TSCS #TetheredSpinalCord #MECFS
On Twitter, there used to be a hashtag #MESpine related to neurosurgical issues in ME.
I also find the theory and pathology sections of Jen Brea's Medium fascinating.
jenbrea.medium.com/cci-tethered...
I also find the theory and pathology sections of Jen Brea's Medium fascinating.
jenbrea.medium.com/cci-tethered...
CCI + Tethered cord series
Diagnosis, surgery, recovery + my theories on the relationship between craniocervical instability (CCI) and myalgic encephalomyelitis (ME)
jenbrea.medium.com
April 21, 2026 at 8:46 AM
On Twitter, there used to be a hashtag #MESpine related to neurosurgical issues in ME.
I also find the theory and pathology sections of Jen Brea's Medium fascinating.
jenbrea.medium.com/cci-tethered...
I also find the theory and pathology sections of Jen Brea's Medium fascinating.
jenbrea.medium.com/cci-tethered...
9. Mai online Ask The Expert zu CCI mit Dr. Fraser Henderson
"Craniocervical instability in patients with Ehlers-Danlos syndromes: outcomes analysis following occipito-cervical fusion"
bobbyjonescsf.org/csf-events/e...
#CCI #EDS #MECFS #MESpine
"Craniocervical instability in patients with Ehlers-Danlos syndromes: outcomes analysis following occipito-cervical fusion"
bobbyjonescsf.org/csf-events/e...
#CCI #EDS #MECFS #MESpine
Ask the Expert – Your Questions Answered – With Dr. Fraser C. Henderson, Sr. – Bobby Jones CSF
Bobby Jones | CSF
bobbyjonescsf.org
April 25, 2024 at 4:48 PM
9. Mai online Ask The Expert zu CCI mit Dr. Fraser Henderson
"Craniocervical instability in patients with Ehlers-Danlos syndromes: outcomes analysis following occipito-cervical fusion"
bobbyjonescsf.org/csf-events/e...
#CCI #EDS #MECFS #MESpine
"Craniocervical instability in patients with Ehlers-Danlos syndromes: outcomes analysis following occipito-cervical fusion"
bobbyjonescsf.org/csf-events/e...
#CCI #EDS #MECFS #MESpine
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
Thanks for your feedback!
Personally, I love the #MESpine hashtag and think it's important. I'm just not sure it's a good fit in this feed.
Maybe it would be an idea to create a feed for #MESpine related topics? Or would that be too specific?
Personally, I love the #MESpine hashtag and think it's important. I'm just not sure it's a good fit in this feed.
Maybe it would be an idea to create a feed for #MESpine related topics? Or would that be too specific?
August 26, 2023 at 4:07 PM
Thanks for your feedback!
Personally, I love the #MESpine hashtag and think it's important. I'm just not sure it's a good fit in this feed.
Maybe it would be an idea to create a feed for #MESpine related topics? Or would that be too specific?
Personally, I love the #MESpine hashtag and think it's important. I'm just not sure it's a good fit in this feed.
Maybe it would be an idea to create a feed for #MESpine related topics? Or would that be too specific?
My ME/CFS doctor just wrote me back within 5 minutes begging for help speaking with hospitalists at Brown U hospital
1020pm at night
That's magic and I hope we can swing things in the right direction. Prayers for all ME warriors and #MEspine warriors
1020pm at night
That's magic and I hope we can swing things in the right direction. Prayers for all ME warriors and #MEspine warriors
March 28, 2025 at 2:30 AM
My ME/CFS doctor just wrote me back within 5 minutes begging for help speaking with hospitalists at Brown U hospital
1020pm at night
That's magic and I hope we can swing things in the right direction. Prayers for all ME warriors and #MEspine warriors
1020pm at night
That's magic and I hope we can swing things in the right direction. Prayers for all ME warriors and #MEspine warriors
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
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
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
Grateful to these folks (headed up by patient researchers!) for getting the #MESpine / mechanical basis hypothesis for ME into the scientific literature 🙏 I’m currently pursuing CCI treatment & hoping it will help alleviate my ME
www.sciencedirect.com/science/arti...
www.sciencedirect.com/science/arti...
Brainstem dysfunction as a potential etiology of ME/CFS and long COVID: A mechanical basis
The underlying mechanism of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) remains poorly understood. Given the dramatic increase in case…
www.sciencedirect.com
December 5, 2025 at 6:20 PM
Grateful to these folks (headed up by patient researchers!) for getting the #MESpine / mechanical basis hypothesis for ME into the scientific literature 🙏 I’m currently pursuing CCI treatment & hoping it will help alleviate my ME
www.sciencedirect.com/science/arti...
www.sciencedirect.com/science/arti...
Free webinar tomorrow by Dr Rowe, with Q&A.
#MECFS #LongCovid #CCI #AAI #MEspine #MCAS #hEDS #POTS #TOS
#MECFS #LongCovid #CCI #AAI #MEspine #MCAS #hEDS #POTS #TOS
Part 2 - Peter Rowe, MD
Feb 16 at 2pm EST
Dr. Rowe will cover:
✨Bio-mechanical issues including thoracic outlet syndrome
✨Neuro-anatomic problems including cervical stenosis & CCI
✨Mast Cell Activation
Register here: us06web.zoom.us/webinar/regi...
Feb 16 at 2pm EST
Dr. Rowe will cover:
✨Bio-mechanical issues including thoracic outlet syndrome
✨Neuro-anatomic problems including cervical stenosis & CCI
✨Mast Cell Activation
Register here: us06web.zoom.us/webinar/regi...
February 16, 2024 at 12:00 AM
#MEspine??
Klaus Wirth Preprint (so not peer-reviewed): proposes a cycle where ME/CFS-driven hypoxia and ROS impair collagen, weakening connective tissue. This explains joint laxity and orthostatic issues unifying disparate symptoms via HIF-1α. www.preprints.org/manuscript/2...
www.preprints.org
May 15, 2026 at 11:02 PM
#MEspine??
#MEcfs anyone able to help with organising a raffle to raise funds? Helping to spread the word on social media? #MEspine #EDS
She needs safe housing + IV infusions NOW. Without this, she risks being forced back into DV.
🎁 We’re organizing a raffle 🎁
to raise life-saving funds for Nevra.
We already have prizes lined up.
What we need:
👉 Help coordinating
👉 Post-making & sharing
👉 Boosting visibility
#MutualAid #pwME
🎁 We’re organizing a raffle 🎁
to raise life-saving funds for Nevra.
We already have prizes lined up.
What we need:
👉 Help coordinating
👉 Post-making & sharing
👉 Boosting visibility
#MutualAid #pwME
September 8, 2025 at 11:23 AM
1/x Many thx to @kaufmanmd.bsky.social et. al
"New MECFS Hypothesis"
"We propose that an infectious insult may trigger an initial loss of connective tissue integrity in susceptible individuals (e.g. those with pre-existing hypermobility spectrum disorders), ...
www.preprints.org/manuscript/2...
"New MECFS Hypothesis"
"We propose that an infectious insult may trigger an initial loss of connective tissue integrity in susceptible individuals (e.g. those with pre-existing hypermobility spectrum disorders), ...
www.preprints.org/manuscript/2...
www.preprints.org
June 16, 2025 at 10:43 AM
I feel like I spend my life with icepacks wrapped around my head, and walking on tiptoes to relieve the 'squashed brain' feeling. Urg. #MEcfs #MEspine #TetheredCord #CCI
February 2, 2025 at 10:10 PM
I feel like I spend my life with icepacks wrapped around my head, and walking on tiptoes to relieve the 'squashed brain' feeling. Urg. #MEcfs #MEspine #TetheredCord #CCI