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

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...

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

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

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

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

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/...

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

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...

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

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;

Eric Topol@erictopol.bsky.social · 2y ago

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!

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

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en.m.wikipedia.org

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:

Katharina 🦋🍋🍀@katha1970.bsky.social · 2y ago

#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.

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.