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...

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."

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

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

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

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

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

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

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...

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

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

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

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

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

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

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

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

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

Jeffrey Lubell (EDS, ME/CFS, LongCOVID Research) on X: "By far, the most important events in the lifecourse of my daughter's #MECFS were two massive relapse events that severely degraded her baseline level of functioning. Hoping to crowdsource ideas from #Medtwitter and #NEISVoid on this phenomenon and how to study it effectively. 1/" / X By far, the most important events in the lifecourse of my daughter's #MECFS were two massive relapse events that severely degraded her baseline level of functioning. Hoping to crowdsource ideas from #Medtwitter and #NEISVoid on this phenomenon and how to study it effectively. 1/

And here’s a thread I wrote earlier about my daughter’s relapse/recovery pattern and some of the ideas for research it has engendered. 9/24 x.com/JeffLubell_C...

Justine on X: "🧵 I think @jonfavs and others don't understand. THIS is how Long Covid happens in the vast majority of cases (including mine): 1. Someone has a relatively mild infection, is not hospitalized, feels "normal" in a couple of weeks, at most." / X 🧵 I think @jonfavs and others don't understand. THIS is how Long Covid happens in the vast majority of cases (including mine): 1. Someone has a relatively mild infection, is not hospitalized, feels "normal" in a couple of weeks, at most.

If you follow the accounts of people with #MECFS or #LongCOVID on social or print media, you’ll see this relapse-recovery pattern a lot. I cite some articles in the paper. Here’s a great example from Twitter. 8/24 x.com/jewstein3000...

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

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

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

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

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

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

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!

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

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

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