Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
@jefflubellc19.bsky.social
I am researching treatments for my daughter, who has hEDS, ME/CFS and other conditions, with implications for #EDS, #MECFS and #LongCOVID. I am a researcher, but not an MD.
Reposted by Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
In this essay, @jefflubellc19.bsky.social , a social science researcher and caregiver for his daughter with multiple chronic conditions, urges medical journals to make it easier for patients and caregivers to publish their experiences.
Read study here: www.annfammed.org/content/23/6...
Read study here: www.annfammed.org/content/23/6...
December 1, 2025 at 4:55 PM
In this essay, @jefflubellc19.bsky.social , a social science researcher and caregiver for his daughter with multiple chronic conditions, urges medical journals to make it easier for patients and caregivers to publish their experiences.
Read study here: www.annfammed.org/content/23/6...
Read study here: www.annfammed.org/content/23/6...
Reposted by Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice! by Jeffrey Lubell @jefflubellc19.bsky.social
www.annfammed.org/content/23/6...
Screenshot from latest Science for ME weekly update
#MEcfs #hEDS #EDS #LongCovid #chronicillness
www.annfammed.org/content/23/6...
Screenshot from latest Science for ME weekly update
#MEcfs #hEDS #EDS #LongCovid #chronicillness
December 1, 2025 at 1:57 AM
To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice! by Jeffrey Lubell @jefflubellc19.bsky.social
www.annfammed.org/content/23/6...
Screenshot from latest Science for ME weekly update
#MEcfs #hEDS #EDS #LongCovid #chronicillness
www.annfammed.org/content/23/6...
Screenshot from latest Science for ME weekly update
#MEcfs #hEDS #EDS #LongCovid #chronicillness
In the latest issue of Annals of Family Medicine
@annfammed.bsky.social, I have a personal reflection titled: “To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice!” This 🧵provides a summary. 1/24 t.co/LURaKCrtT6
@annfammed.bsky.social, I have a personal reflection titled: “To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice!” This 🧵provides a summary. 1/24 t.co/LURaKCrtT6
https://www.annfammed.org/content/23/6/570
t.co
November 30, 2025 at 4:25 PM
In the latest issue of Annals of Family Medicine
@annfammed.bsky.social, I have a personal reflection titled: “To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice!” This 🧵provides a summary. 1/24 t.co/LURaKCrtT6
@annfammed.bsky.social, I have a personal reflection titled: “To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice!” This 🧵provides a summary. 1/24 t.co/LURaKCrtT6
Reposted by Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
For a summary, check this out: www.bsms.ac.uk/about/news/2...
More to come out of this data set soon!
More to come out of this data set soon!
September 26, 2025 at 4:00 PM
For a summary, check this out: www.bsms.ac.uk/about/news/2...
More to come out of this data set soon!
More to come out of this data set soon!
Our paper found that people with generalized joint #hypermobility have a 23% higher risk of #LongCOVID while people with extreme hypermobility have a 76% higher risk of #LongCOVID. This thread focuses on possible explanations for the higher risk. 1/20
September 22, 2025 at 11:30 AM
Our paper found that people with generalized joint #hypermobility have a 23% higher risk of #LongCOVID while people with extreme hypermobility have a 76% higher risk of #LongCOVID. This thread focuses on possible explanations for the higher risk. 1/20
Our article examining the extent to which people with #hypermobility are at risk of Long COVID was just published in BMJ Public Health, an open access journal. bmjpublichealth.bmj.com/content/3/2/...
Variant connective tissue as a risk factor for long COVID: a case-control study of data from a retrospective online survey of adults in the USA and UK
Introduction This study explored the extent to which two measures of joint hypermobility, a marker of variant connective tissue, predict the development of long COVID after COVID-19 infection, and whe...
bmjpublichealth.bmj.com
September 19, 2025 at 11:52 AM
Our article examining the extent to which people with #hypermobility are at risk of Long COVID was just published in BMJ Public Health, an open access journal. bmjpublichealth.bmj.com/content/3/2/...
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...
www.medrxiv.org
March 2, 2025 at 3:21 PM
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...
Reposted by Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
Reposted by Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
And here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community.
Not comprehensive, but maybe a helpful start.
go.bsky.app/LciucLP
Not comprehensive, but maybe a helpful start.
go.bsky.app/LciucLP
November 16, 2024 at 10:41 PM
And here is a starter-pack with many patients and allies from the #LongCovid #MECFS #ComplexChronicIllness community.
Not comprehensive, but maybe a helpful start.
go.bsky.app/LciucLP
Not comprehensive, but maybe a helpful start.
go.bsky.app/LciucLP
A few thoughts about this important review on #LongCOVID interventions: 1) It is important to look the evidence straight in the face; even if we don't like what it tells us. Whatever their limitations, well-done RCTs remain the most effective way to determine which interventions are impactful;
A systematic review of 24 randomized trials for #LongCovid
www.bmj.com/content/387/... open-access
No drug, diet, or device intervention has supportive evidence for efficacy. CBT, rehab provided some relief of symptoms (moderate certainty).
We're still in desperate need for a validated treatment!
www.bmj.com/content/387/... open-access
No drug, diet, or device intervention has supportive evidence for efficacy. CBT, rehab provided some relief of symptoms (moderate certainty).
We're still in desperate need for a validated treatment!
November 28, 2024 at 4:09 PM
A few thoughts about this important review on #LongCOVID interventions: 1) It is important to look the evidence straight in the face; even if we don't like what it tells us. Whatever their limitations, well-done RCTs remain the most effective way to determine which interventions are impactful;
Reposted by Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
Today, Wikipedia's featured article is about ME/CFS!
Each day, a summary of one of Wikipedia's features articles appears at the top of the main page as "Today's Featured Article".
We invite you to share it & point people to @meactnet.bsky.social for more info!
en.m.wikipedia.org/wiki/Main_Page
Each day, a summary of one of Wikipedia's features articles appears at the top of the main page as "Today's Featured Article".
We invite you to share it & point people to @meactnet.bsky.social for more info!
en.m.wikipedia.org/wiki/Main_Page
Wikipedia, the free encyclopedia
en.m.wikipedia.org
November 25, 2024 at 4:29 PM
Today, Wikipedia's featured article is about ME/CFS!
Each day, a summary of one of Wikipedia's features articles appears at the top of the main page as "Today's Featured Article".
We invite you to share it & point people to @meactnet.bsky.social for more info!
en.m.wikipedia.org/wiki/Main_Page
Each day, a summary of one of Wikipedia's features articles appears at the top of the main page as "Today's Featured Article".
We invite you to share it & point people to @meactnet.bsky.social for more info!
en.m.wikipedia.org/wiki/Main_Page
Reposted by Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)
Welcome to Bluesky, @jefflubellc19.bsky.social ! Great to see you here. Anyone interested in #MECFS #LongCovid, please do follow Jeff Lubell.
Here's his talk from the #UniteToFight2024 conference:
Here's his talk from the #UniteToFight2024 conference:
#UniteToFight2024
Jeff Lubell's moving account as a parent and caregiver to a young adult with #MECFS is now available with 🇬🇧 subtitles: youtu.be/WeEWJI3txvg
You can use YouTube's auto-translation for subtitles in many other languages.
Jeff Lubell's moving account as a parent and caregiver to a young adult with #MECFS is now available with 🇬🇧 subtitles: youtu.be/WeEWJI3txvg
You can use YouTube's auto-translation for subtitles in many other languages.
Jeff Lubell: A Longitudinal Perspective on ME/CFS (Day 2, Block 8)
YouTube video by UniteToFight
youtu.be
November 25, 2024 at 5:21 PM
Welcome to Bluesky, @jefflubellc19.bsky.social ! Great to see you here. Anyone interested in #MECFS #LongCovid, please do follow Jeff Lubell.
Here's his talk from the #UniteToFight2024 conference:
Here's his talk from the #UniteToFight2024 conference:
First post on this platform. Nothing but blue sky as far as I can see . . . Looking forward to the dialogue on #hEDS, #MECFS, #LongCOVID and more.
November 25, 2024 at 12:58 AM
First post on this platform. Nothing but blue sky as far as I can see . . . Looking forward to the dialogue on #hEDS, #MECFS, #LongCOVID and more.