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Reposted by Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)

Tom Kindlon @tomkindlon.bsky.social · 06/02/2026

To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice! by @jefflubellc19.bsky.social Screenshot from February 2026 AMMES newsletter www.annfammed.org/content/23/6... #chronicillness #Spoonie #MEcfs #CFS #POTS #LongCovid #hEDS #CCI

One hand holding another hand in a supportive way

To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice!
My daughter has been diagnosed with a range of chronic conditions, including Hyper-mobile Ehlers-Danlos Syndrome and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I have approached my role as caregiver in the same way I approach my day job leading social science research: reading the literature, carefully observing her condition, and developing hypotheses about her conditions and how they might be treated. I now have more than 7 years of longitudinal observation—a wealth of data—but no easy way to share with the medical research community the hypotheses these observations have engendered and my ideas about how to productively structure future research to accelerate progress toward treatments for her and others like her.
Read more here>>

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Reposted by Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)

Annals of Family Medicine @annfammed.bsky.social · 01/12/2025

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...

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Reposted by Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)

Tom Kindlon @tomkindlon.bsky.social · 01/12/2025

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

To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice! — Jeffrey Lubell
"In this essay, I share my thoughts on why patient and caregiver observations and hypotheses are important and how the medical research field might tap into them to make faster progress toward effective treatments for complex medical conditions."

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Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research) @jefflubellc19.bsky.social · 30/11/2025

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

t.co

https://www.annfammed.org/content/23/6/570

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Reposted by Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)

Dr Lisa Quadt @lisaquadt.bsky.social · 26/09/2025

For a summary, check this out: www.bsms.ac.uk/about/news/2... More to come out of this data set soon!

bsms.ac.uk

Hypermobility identified as risk factor for Long Covid - BSMS

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Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research) @jefflubellc19.bsky.social · 22/09/2025

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

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Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research) @jefflubellc19.bsky.social · 02/03/2025

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...

medrxiv.org

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Reposted by Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)

Katharina 🦋🍋🍀 @katha1970.bsky.social · 16/11/2024

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

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Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research) @jefflubellc19.bsky.social · 28/11/2024

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;

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Reposted by Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)

#MEAction Network @meactnet.bsky.social · 25/11/2024

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

en.m.wikipedia.org

Wikipedia, the free encyclopedia

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Reposted by Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research)

Katharina 🦋🍋🍀 @katha1970.bsky.social · 25/11/2024

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:

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Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research) @jefflubellc19.bsky.social · 25/11/2024

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.

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