Laila 🌻
@lailamourthe.bsky.social
Hipermobility Spectrum Disorder (HSD) 🦓
Craniocervical Instability (CCI)
Atlantoaxial Instability (AAI)
POTS
Neurodivergent 🌻
Architect/researcher from Brazil.
Homebound and bedbound most of the time.
Craniocervical Instability (CCI)
Atlantoaxial Instability (AAI)
POTS
Neurodivergent 🌻
Architect/researcher from Brazil.
Homebound and bedbound most of the time.
Reposted by Laila 🌻
Neuroanatomical Considerations in Pediatric ME/CFS
Monday, December 15th at 1pm
Dr Peter Rowe's 5th #Evidencebased #Pediatric #MECFS webinar series #MedEd #MedSky
Provider-oriented & patient accessible
#livedexperience panel
Available online at:
Youtube.com/@MEActMaryland
#Neuroanatomy
Monday, December 15th at 1pm
Dr Peter Rowe's 5th #Evidencebased #Pediatric #MECFS webinar series #MedEd #MedSky
Provider-oriented & patient accessible
#livedexperience panel
Available online at:
Youtube.com/@MEActMaryland
#Neuroanatomy
December 9, 2025 at 6:44 AM
Neuroanatomical Considerations in Pediatric ME/CFS
Monday, December 15th at 1pm
Dr Peter Rowe's 5th #Evidencebased #Pediatric #MECFS webinar series #MedEd #MedSky
Provider-oriented & patient accessible
#livedexperience panel
Available online at:
Youtube.com/@MEActMaryland
#Neuroanatomy
Monday, December 15th at 1pm
Dr Peter Rowe's 5th #Evidencebased #Pediatric #MECFS webinar series #MedEd #MedSky
Provider-oriented & patient accessible
#livedexperience panel
Available online at:
Youtube.com/@MEActMaryland
#Neuroanatomy
Reposted by Laila 🌻
KEY POINTS (1/3)
~ Subset of individuals with ME have anatomic abnormalities such as Chiari malformation, cranio-cervical instability (CCI), Atlanto axial instability (AAI), spinal stenosis & tethered cord syndromes
#myalgicencephalomyelitis
#Chiari #CCI #Tetheredcord #spinalstenosis
~ Subset of individuals with ME have anatomic abnormalities such as Chiari malformation, cranio-cervical instability (CCI), Atlanto axial instability (AAI), spinal stenosis & tethered cord syndromes
#myalgicencephalomyelitis
#Chiari #CCI #Tetheredcord #spinalstenosis
December 9, 2025 at 6:44 AM
KEY POINTS (1/3)
~ Subset of individuals with ME have anatomic abnormalities such as Chiari malformation, cranio-cervical instability (CCI), Atlanto axial instability (AAI), spinal stenosis & tethered cord syndromes
#myalgicencephalomyelitis
#Chiari #CCI #Tetheredcord #spinalstenosis
~ Subset of individuals with ME have anatomic abnormalities such as Chiari malformation, cranio-cervical instability (CCI), Atlanto axial instability (AAI), spinal stenosis & tethered cord syndromes
#myalgicencephalomyelitis
#Chiari #CCI #Tetheredcord #spinalstenosis
Hi, everyone! I’m from 🇧🇷. For those who have done crowdfunding for CCI/AAI surgery, could you share: which platform you used, what worked well (and what didn’t), any tips for reaching international donors, anything you wish you had known beforehand. 💙
#cci #mecfs #mespine #hypermobility
#cci #mecfs #mespine #hypermobility
December 11, 2025 at 12:27 AM
Hi, everyone! I’m from 🇧🇷. For those who have done crowdfunding for CCI/AAI surgery, could you share: which platform you used, what worked well (and what didn’t), any tips for reaching international donors, anything you wish you had known beforehand. 💙
#cci #mecfs #mespine #hypermobility
#cci #mecfs #mespine #hypermobility
Reposted by Laila 🌻
It's Giving Tuesday. Please support this relatively new organization that has made an impact with free educational videos, securing discounts on helpful supplements and tests, bringing together researchers, clinicians, and patients, with more.
You can also help by sharing our fundraising on social media and by encouraging others who can donate to give to @renegaderesearch.bsky.social.
Small donations add up, and many people are looking to make bigger end of year gifts! www.zeffy.com/en-US/fundra...
Small donations add up, and many people are looking to make bigger end of year gifts! www.zeffy.com/en-US/fundra...
Accelerate research and care for ME/CFS & Long COVID
Renegade Research (RR) is a non-profit, 501c3 decentralized organization pioneering patient and caregiver-led research with a focus on ME/CFS, Long COVID (LC) and other infection associated chronic il...
www.zeffy.com
December 2, 2025 at 1:51 PM
It's Giving Tuesday. Please support this relatively new organization that has made an impact with free educational videos, securing discounts on helpful supplements and tests, bringing together researchers, clinicians, and patients, with more.
Reposted by Laila 🌻
Nonprofit fundraising structures have cratered in 2025, limiting the amount of available staff, volunteers, research, projects
Renegade Research is one of a handful of nonprofits doing research, care and education in post-infectious and post-immune event conditions — donate ⬇️
Renegade Research is one of a handful of nonprofits doing research, care and education in post-infectious and post-immune event conditions — donate ⬇️
You can also help by sharing our fundraising on social media and by encouraging others who can donate to give to @renegaderesearch.bsky.social.
Small donations add up, and many people are looking to make bigger end of year gifts! www.zeffy.com/en-US/fundra...
Small donations add up, and many people are looking to make bigger end of year gifts! www.zeffy.com/en-US/fundra...
Accelerate research and care for ME/CFS & Long COVID
Renegade Research (RR) is a non-profit, 501c3 decentralized organization pioneering patient and caregiver-led research with a focus on ME/CFS, Long COVID (LC) and other infection associated chronic il...
www.zeffy.com
December 1, 2025 at 6:07 PM
Nonprofit fundraising structures have cratered in 2025, limiting the amount of available staff, volunteers, research, projects
Renegade Research is one of a handful of nonprofits doing research, care and education in post-infectious and post-immune event conditions — donate ⬇️
Renegade Research is one of a handful of nonprofits doing research, care and education in post-infectious and post-immune event conditions — donate ⬇️
Reposted by Laila 🌻
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...
Reposted by Laila 🌻
i do not recommend having craniocervical instability. that shit hurty
April 24, 2025 at 3:51 PM
i do not recommend having craniocervical instability. that shit hurty
Reposted by Laila 🌻
I was labeled a hypochondriac and had my strange symptoms constantly dismissed. however my persistence eventually rewarded me with a legitimate diagnosis. what was initially written off as panic attacks turned out to be brain stem compression brought on by craniocervical instability.
October 10, 2025 at 12:55 AM
I was labeled a hypochondriac and had my strange symptoms constantly dismissed. however my persistence eventually rewarded me with a legitimate diagnosis. what was initially written off as panic attacks turned out to be brain stem compression brought on by craniocervical instability.
Reposted by Laila 🌻
Somebody asked me yesterday for a list of differential diagnoses for ME/CFS. Here's a second chart.
As some have argued, people can have these and still have ME/CFS
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
From:
mecfscliniciancoalition.org/wp-content/u...
1/
As some have argued, people can have these and still have ME/CFS
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
From:
mecfscliniciancoalition.org/wp-content/u...
1/
October 6, 2025 at 12:29 PM
Somebody asked me yesterday for a list of differential diagnoses for ME/CFS. Here's a second chart.
As some have argued, people can have these and still have ME/CFS
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
From:
mecfscliniciancoalition.org/wp-content/u...
1/
As some have argued, people can have these and still have ME/CFS
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
From:
mecfscliniciancoalition.org/wp-content/u...
1/
Reposted by Laila 🌻
She couldn't get diagnosed in Ontario & went to the US & was diagnosed with Craniocervical Instability, a condition that impacts mostly women. She suspects she also has Ehlers-Danlos Syndrome. Her family doctor referred her to 9 neurosurgeons and her consultations have been denied. Upcoming episode.
Sydney Gesualdi was diagnosed with craniocervical instability, a rare condition that mostly affects women. After nine neurosurgeon referrals, she still can’t get surgery. She tells @namshine.bsky.social her story on an upcoming episode of (MIS)Treated. podcasts.apple.com/ca/podcast/m...
October 24, 2025 at 3:27 PM
She couldn't get diagnosed in Ontario & went to the US & was diagnosed with Craniocervical Instability, a condition that impacts mostly women. She suspects she also has Ehlers-Danlos Syndrome. Her family doctor referred her to 9 neurosurgeons and her consultations have been denied. Upcoming episode.
Reposted by Laila 🌻
I have some characteristics of EDS I have the hypermobility just not enough for a formal diagnosis of EDS.
If you haven’t heard of EDS give yourself the moment to become introduced to the condition.
If you haven’t heard of EDS give yourself the moment to become introduced to the condition.
Ehlers-Danlos Syndrome was first classified in 1968 with 5 types. Today there are 13 — and hypermobile EDS makes up 90% of cases. Women = 70%. Diagnosis can take 4–16 yrs. On (MIS)Treated, @namshine.bsky.social talks to Sydney Gesualdi about EDS & Craniocervical Instability.
December 5, 2025 at 9:39 PM
I have some characteristics of EDS I have the hypermobility just not enough for a formal diagnosis of EDS.
If you haven’t heard of EDS give yourself the moment to become introduced to the condition.
If you haven’t heard of EDS give yourself the moment to become introduced to the condition.
Reposted by Laila 🌻
"I believe that it's no coincidence that a condition that predominantly affects women has been so under-recognized and neglected both systemically and medically." On (MIS)Treated, @namshine.bsky.social talks to Sydney Gesualdi about EDS & Craniocervical Instability.
December 2, 2025 at 4:25 PM
"I believe that it's no coincidence that a condition that predominantly affects women has been so under-recognized and neglected both systemically and medically." On (MIS)Treated, @namshine.bsky.social talks to Sydney Gesualdi about EDS & Craniocervical Instability.
Reposted by Laila 🌻
Women make up 70% of diagnosed cases for Ehlers-Danlos Syndrome and it can take 4 to 16 years to get a diagnosis in Canada. To be diagnosed with Craniocervical Instability, Sydney had to crowdfund & travel to the states for care. Look for deeper investigation of this in 2026 on (MIS)Treated podcast.
"I believe that it's no coincidence that a condition that predominantly affects women has been so under-recognized and neglected both systemically and medically." On (MIS)Treated, @namshine.bsky.social talks to Sydney Gesualdi about EDS & Craniocervical Instability.
December 2, 2025 at 4:59 PM
Women make up 70% of diagnosed cases for Ehlers-Danlos Syndrome and it can take 4 to 16 years to get a diagnosis in Canada. To be diagnosed with Craniocervical Instability, Sydney had to crowdfund & travel to the states for care. Look for deeper investigation of this in 2026 on (MIS)Treated podcast.
Reposted by Laila 🌻
my wife googled “united airlines customer service” the other day and the AI summary seemed legit enough so she called the number that it listed. she got like 30 seconds into the call before they were asking for her BANK INFO. a scammer had gotten their number prominent enough that the AI grabbed it.
October 9, 2024 at 6:09 PM
my wife googled “united airlines customer service” the other day and the AI summary seemed legit enough so she called the number that it listed. she got like 30 seconds into the call before they were asking for her BANK INFO. a scammer had gotten their number prominent enough that the AI grabbed it.
Reposted by Laila 🌻
Fantastic #NEISvoid news: Unraveled, the podcast about complex chronic illness by Drs. David Kaufman and Ilene Ruhoy, is coming out from behind the paywall!
They haven’t started adding episodes yet but here’s the YouTube channel to follow.
#LongCovid #MECFS #hEDS #MEspine #MCAS #POTS
They haven’t started adding episodes yet but here’s the YouTube channel to follow.
#LongCovid #MECFS #hEDS #MEspine #MCAS #POTS
Unraveled: Understanding Complex Illness
David Kaufman, MD, an internist and Ilene Ruhoy, MD, PhD, a neurologist, are both experts in chronic complex illnesses. We focus on those suffering with ME/CFS, hEDS, MCAS, SFN, POTS, autoimmunity, Lo...
www.youtube.com
October 20, 2024 at 2:19 AM
Reposted by Laila 🌻
Elon just used @en.blueark.app to bring his old tweets over from X/Twitter—and so can you!
It's a paid but reasonably priced service (price depends on number of tweets), and your old posts will arrive backdated (and won't spam your followers). Coming soon: port over your downloaded archive!
It's a paid but reasonably priced service (price depends on number of tweets), and your old posts will arrive backdated (and won't spam your followers). Coming soon: port over your downloaded archive!
book’s been out a week and a day. If you have any doubts about buying it or asking your library to stock it, take it from Ms. Blume.
October 21, 2024 at 9:03 PM
Elon just used @en.blueark.app to bring his old tweets over from X/Twitter—and so can you!
It's a paid but reasonably priced service (price depends on number of tweets), and your old posts will arrive backdated (and won't spam your followers). Coming soon: port over your downloaded archive!
It's a paid but reasonably priced service (price depends on number of tweets), and your old posts will arrive backdated (and won't spam your followers). Coming soon: port over your downloaded archive!
Reposted by Laila 🌻
All, I will be delivering a talk this Friday with INIM on RECOVER TLC: Lessons Learned and Next Steps. Hope you'll join me!
If you have questions about RECOVER TLC, you might consider asking them here. I'll do my best to address them in the Q&A! #MECFS #LongCOVID 🧪
Please share widely!
If you have questions about RECOVER TLC, you might consider asking them here. I'll do my best to address them in the Q&A! #MECFS #LongCOVID 🧪
Please share widely!
October 4, 2024 at 12:54 PM
Reposted by Laila 🌻
This. I personally believe that having a large number of neurodivergent friends should be considered strong evidence that you, yourself are neurodivergent.
The reason it seems like so many people you know are being diagnosed with ADHD isn’t because it’s trendy or over diagnosed—it’s because neurodivergent people find each other and form communities.
October 1, 2024 at 1:57 PM
This. I personally believe that having a large number of neurodivergent friends should be considered strong evidence that you, yourself are neurodivergent.
Reposted by Laila 🌻
Something I have been chewing on lately is that while I COMPLETELY understand shock and grief in the face of new disability, there’s a particular arrogance to assuming your experience of suffering is unique.
We have been disabled. We have been fighting the fight longer than you’ve been aware of it.
We have been disabled. We have been fighting the fight longer than you’ve been aware of it.
September 28, 2024 at 9:11 PM
Something I have been chewing on lately is that while I COMPLETELY understand shock and grief in the face of new disability, there’s a particular arrogance to assuming your experience of suffering is unique.
We have been disabled. We have been fighting the fight longer than you’ve been aware of it.
We have been disabled. We have been fighting the fight longer than you’ve been aware of it.
Reposted by Laila 🌻
“You’re on disability? You’re so lucky! I wish I didn’t have to work.”
Do people not understand how sick you need to be to GET disability?
It’s not a vacation. It’s not fun. It’s heartbreaking to lose your health & independence. To have society treat you as disposable. 1/2
Do people not understand how sick you need to be to GET disability?
It’s not a vacation. It’s not fun. It’s heartbreaking to lose your health & independence. To have society treat you as disposable. 1/2
September 28, 2024 at 4:47 AM
“You’re on disability? You’re so lucky! I wish I didn’t have to work.”
Do people not understand how sick you need to be to GET disability?
It’s not a vacation. It’s not fun. It’s heartbreaking to lose your health & independence. To have society treat you as disposable. 1/2
Do people not understand how sick you need to be to GET disability?
It’s not a vacation. It’s not fun. It’s heartbreaking to lose your health & independence. To have society treat you as disposable. 1/2
Reposted by Laila 🌻
"They don't let their disability stop them" is not helpful, kind, nor a compliment; it celebrates only exceptional disabled ppl, implicitly judging those who aren't. Disability can stop one, no matter how strong/determined, as can inaccessibility, systemic discrimination, and societal prejudices.
September 23, 2024 at 10:46 PM
"They don't let their disability stop them" is not helpful, kind, nor a compliment; it celebrates only exceptional disabled ppl, implicitly judging those who aren't. Disability can stop one, no matter how strong/determined, as can inaccessibility, systemic discrimination, and societal prejudices.
Reposted by Laila 🌻
O conceito “entrar na internet” não existe mais, porque a gente simplesmente não sai
September 22, 2024 at 3:15 PM
O conceito “entrar na internet” não existe mais, porque a gente simplesmente não sai
Reposted by Laila 🌻
Já reparou que, em todo debate, a única proposta da direita pra educação é "educação financeira"?
Isso tem motivo: tentar convencer o pobre que ele é pobre porque lhe falta controle financeiro.
E isso mascara a realidade que, em um sistema desigual, não existe o fim da pobreza sem justiça social.
Isso tem motivo: tentar convencer o pobre que ele é pobre porque lhe falta controle financeiro.
E isso mascara a realidade que, em um sistema desigual, não existe o fim da pobreza sem justiça social.
September 20, 2024 at 2:48 PM
Já reparou que, em todo debate, a única proposta da direita pra educação é "educação financeira"?
Isso tem motivo: tentar convencer o pobre que ele é pobre porque lhe falta controle financeiro.
E isso mascara a realidade que, em um sistema desigual, não existe o fim da pobreza sem justiça social.
Isso tem motivo: tentar convencer o pobre que ele é pobre porque lhe falta controle financeiro.
E isso mascara a realidade que, em um sistema desigual, não existe o fim da pobreza sem justiça social.