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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

Ensuring a system like this works work well will be hard. But not nearly as hard as living with chronic illness for many additional years because we haven't figured out how to more effectively tap into patient and caregiver experience. 24/24

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

It would also be useful to pair patients/caregivers with researchers that share interests. Funding will also be needed to pay for open-access fees and to ensure journals have the staff needed to handle the influx of additional articles they receive. 23/24

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

Would patients and caregivers authors benefit from professional guidance? Yes, for sure. That's why, to really make this process work, journals should have open-minded medical professionals work with patients and caregivers to help them strengthen their hypotheses and articles. 22/24

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

To make faster progress in addressing chronic illness, we should let the medical research field hear directly from patients and caregivers through publications in well-read medical journals. 21/24

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

Some patients and caregivers have crossed over and published original research in conventional medical journals. I have as well. But we can’t expect all patients and caregivers to do this. 20/24 t.co/f1OTxiBbHt

t.co

https://bmjpublichealth.bmj.com/content/3/2/e002949

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

They also have a wonderful journal of patient hypothesis to which I and others have contributed. But how will researchers find these hypotheses if they are not indexed in PubMed? 19/24 patientresearchcovid19.com/projects/pat...

patientresearchcovid19.com

Patient-Generated Research Hypotheses – Patient Led Research Collaborative

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

The Patient-Led Research Collaborative @patientled.bsky.social has done a fantastic job organizing patient-led research that has led both to publications in established journals and to greater involvement of patients in research more broadly. 18/24

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

This is just one small example of why more PubMed-indexed medical journals should accept case studies and hypothesis papers from patients and caregivers. Other patients & caregivers will have other ideas that the field needs to hear! 17/24

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

I believe we urgently need more systematic research on this issue, starting with qualitative accounts and supplementing with medical records and test results. But how can I share this view with the medical research community if journals strongly discourage patient/caregiver submissions? 16/24

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

But how can we know? Individual stories of patients and carefivers only tell you so much, but they can be analyzed systematically, both through retrospective and prospective qualitative studies and through social media and other content analysis. 15/24

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

If a significant subset of #LongCOVID or #MECFS patients follow a relapse-recovery pattern, research is urgently needed on what causes the relapses and how to accelerate recovery. We will also need to segment treatment trials by place on longitudinal progression. 14/24

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

Most research is cross-sectional, analyzing data from multiple patients at a single time. Cross-sectional research is important but is largely incapable of identifying longitudinal patterns. 13/24

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

It is of critical importance to understand whether #MECFS & #LongCOVID are simple binary phenomena – you have them or you don't – or longitudinal disorders in which relapse events cause lasting damage that heals over time. (Or perhaps a combination, such as vascular damage + autoantibodies. ) 12/24

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

A paper came out just the other day documenting the longitudinal experiences of COVID patients in the first 15 months after infection. Great to see a focus on longitudinal patterns, but the follow-up period is not nearly long enough. 11/24 t.co/b47on8dWJC

t.co

https://www.nature.com/articles/s41467-025-65239-4

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

Unfortunately, more than 35 years after the “discovery” of #MECFS and more than five and a half years after the appearance of #LongCOVID we still don’t know how prevalent this pattern is in these illnesses. 10/24

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

Consider the experience of my daughter, who has #hEDS, #MECFS, #Craniocervical instability, #Chiari, and #POTS. Her illness has largely followed a relapse-recovery paradigm, with extremely slow recoveries following two major relapses. 7/24

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

Why is this important? One reason is that patients and caregivers can report on the longitudinal progression of chronic illness, something that is difficult and expensive to study through conventional research. 6/24

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

This is important, but not sufficient. It helps researchers refine their existing ideas, but doesn’t necessarily expose them to new ones. It also means other researchers are deprived of access to the first-hand experiences of patients and caregivers. 5/24

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

There has been a lot of progress in recent years in developing mechanisms for patient input into research. But this mostly consists of providing researchers with feedback on the researchers’ own ideas and methods. 4/24

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

In particular, I argue that more medical journals indexed in PubMed should accept hypotheses papers and case studies from patients and caregivers. This will help ensure their perspectives are readily available to medical researchers. 3/24

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

My basic argument is that better and more direct mechanisms for patient and caregiver input would help the medical research field make faster progress in understanding and developing treatments for chronic illnesses like #LongCOVID, #MECFS and #hEDS. 2/24

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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

BREAKING NEWS: Exciting new preprint from @norrislabs.bsky.social & team documents the results of their genome-wide association study of hEDS and matched controls. Among other findings, they find a strong genetic overlap with #MECFS and other comorbid conditions. medrxiv.org/content/10.1... 20/20

medrxiv.org

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

For more detail on findings from our study (with Regina Torok, Rena Rudy, @bendybrain.bsky.social and @lisaquadt.bsky.social), see this thread on the preprint: bsky.app/profile/jeff... 19/20

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

Additional research is needed to assess these and other potential explanations and shed light on the pathophysiology of #LongCOVID and related disorders like #MECFS. This in turn should accelerate progress toward treatment. 18/20

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

Another important question is whether and to what extent other connective tissue disorders increase #LongCOVID risks. There are a lot of connective tissue disorders. While each one may be rare, together they may help explain a lot of the pathogenesis of LongCOVID. 17/20

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

As part of process of assessing these hypotheses & outlining and testing plausible mechanisms, it will be important to consider how much of risk derives from genetic factors vs. acquired factors. For example, we know viruses can damage connective tissue. 16/20 www.frontiersin.org/journals/neu...

frontiersin.org

Frontiers | Long COVID and hypermobility spectrum disorders have shared pathophysiology

Hypermobility Spectrum Disorders (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS) are the most common joint hypermobility conditions encountered by physic...

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

Fifth, people with connective tissue disorders may be more likely to experience and be slower to recover from the vascular damage that characterizes long COVID and associated damage to the extracellular matrix. 11/20 rdcu.be/dx0o8

rdcu.be

People with a connective tissue disorder may be especially vulnerable to the endothelial damage that characterizes long COVID due to the fragility of their vasculature and slow wound healing

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

First, vascular laxity may make people with #EDS vulnerable to orthostatic intolerance (such as #POTS) due to the distension of veins from hydrostatic pressure, which increases venous pooling. 6/20 www.autonomicneuroscience.com/article/S156... & linkinghub.elsevier.com/retrieve/pii...

linkinghub.elsevier.com

Redirecting

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

Similarly, if you think that #hEDS and hypermobility spectrum disorder are simply benign conditions that cause joints to go out of place, you need to explain why people with these disorders are more likely to experience #LongCOVID and other post-viral conditions. 4/20

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

Whether your hypothesis is that #LongCOVID is caused by viral persistance, vascular damage, or microclots, a key litmus test for this hypothesis ought to be whether you can explain why this mechanism is more likely to occur in people with #hEDS. 3/20

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

Before reviewing possible mechanisms discussed in the paper, I want to pause and discuss why this information will be helpful. In brief, this information will help shed light on the pathophysiology of both #LongCOVID and hypermobility disorders like #hEDS. 2/20

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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 · 19/09/2025

There is more data yet to come from the survey. Stay tuned!

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Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research) @jefflubellc19.bsky.social · 19/09/2025

Authors include: Regina Torok, Rena Rudy, @bendybrain.bsky.social, @lisaquadt.bsky.social, and me. Much thanks to @ehlersdanlos.bsky.social and Ehlers-Danlos Syndrome Research Foundation for providing funding for the research and to everyone who participated in the survey.

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