“There is a city nearby that we hide from view. Its people are of all ages, ethnicities & classes. What unites them is a disease: all are diagnosed w/ myalgic encephalomyelitis.
We hide them there because we don’t know where else to put them. Like a plague village, we have no plans to treat them…”
New paper in @thelancetinfdis.bsky.social from PLRC by @chloedecanson.bsky.social, @leticiasaurus.bsky.social, @chromatowski.bsky.social / @romatowski.bsky.social and Gina Assaf: "The case for routine patient review in #LongCovid research.” 🧵1/11
Thank you :)
"Long COVID received 14% of its disability commensurate funding...
ME/CFS is the most under-funded condition, receiving <1% of its YLD [years lived with disability] proportionate funding."
Plus the LC disability weight of 0.21 likely underestimates its burden.
www.nature.com/articles/s43...
Those researchers who routinely do patient involvement know the value of the insights of the people who actually have the disease
To enable involvement of pwLC at all stages of research @longcovidsupport.bsky.social offer a Research Involvement Consultancy service. www.longcovid.org/research/res...
This resource looks absolutely fantastic!
Yes. Now.
👏🏻👏🏻👏🏻👏🏻👏🏻
It means a lot to hear this, thank you!!
What a pleasure and honour working with you on this Catherine :))
Thrilled we have this new Comment out in @thelancetinfdis.bsky.social, arguing that to give Long COVID scientists more incentive to incorporate patient expertise throughout the research process, LC papers should all be subject to pre-publication review by patients.
Free to read w/registration!
New comment
The case for routine patient review in long COVID research
www.thelancet.com/journals/lan...
The paper is available to read for free (if you register) here: www.thelancet.com/journals/lan... 12/12.
Thanks to the fantastic author team @leticiasaurus.bsky.social, @romatowski.bsky.social @chromatowski.bsky.social, and Gina Assaf, all from the Patient-Led Research Collaborative (@patientled.bsky.social). 11/
In sum, routine patient review for all manuscripts has the potential to increase patient participation in science, incentivise uptake of our expertise, and thus improve scientific outputs, bringing us closer to finally achieving approved treatments. 10/
Pairing experienced and newer patient reviewers could help with training and building confidence, thereby broadening access to scientific participation for patients and expanding the pool of potential patient reviewers for editors. 9/
The patient review process must be accessible to sometimes very sick people. The pool of patient reviewers must be equitable, and must reflect the composition of the patient population at large. Remuneration for patient review, as practised by the @bmj.com, would support this goal. 8/
Indeed, anticipation of patient-expert
scrutiny at the review stage creates a clear incentive to design and conduct studies that patients will deem methodologically sound and relevant, which in turn incentivises meaningful collaboration with patient-experts throughout the research process. 7/
We make a proposal: we believe that *routine* patient review for *all* manuscripts on Long COVID would create a clear incentive for institutional researchers to preemptively consult with and integrate feedback from patient researchers. 6/
Despite this, people with Long COVID are still frequently excluded from research, or included in ways that fail to integrate their expertise. Structural incentives are therefore needed to ensure that institutional researchers engage patient expertise meaningfully throughout the research process. 5/
In Long COVID, patient-researchers defined Long COVID, established it as a disease in the scientific literature, and published numerous subsequent papers on epidemiology, study and trial design, pathophysiology, and public health. They shaped scientific research on the disease. 4/
We have already seen this in HIV/AIDS and in other infection-associated chronic conditions (IACCs) like ME, wherein institutional researchers conflated fatigue with post-exertional malaise (PEM), despite these features of the disease having little in common with one another. 3/
Patient expertise is always essential to research on a disease, and especially so when the disease at hand primarily affects women and/or marginalised populations, is stigmatised, and is underfunded and thus insufficiently understood. 2/
THE LANCET Infectious Diseases COMMENT • Online first, March 31, 2026 The case for routine patient review in long COVID research Letícia Soares . CH Romatowski . Gina Assaf . Chloé de Canson
Many Long COVID scientists fail to meaningfully draw on the insights of patient-researchers. In our Comment for @thelancetinfdis.bsky.social, we propose a solution: make all Long COVID papers undergo pre-publication patient review. 1/
Not counting myself or the people I met after I got sick, 4 who have needed extended time off work as a result of LC, and a further 3 who could continue working but had persisting symptoms. None are recovered, though some are doing better than they initially were
That’s so many people who should be in school, or who would otherwise be at work, and who instead suffer in bed day in day out with no concrete hopes of getting better because the state doesn’t want to address the issue! and of course it’s all getting worse as COVID continues to disable people
many, the risk of being reinfected by their kids (which would be catastrophic) has meant that the kids have had to be pulled out of school and homeschooled instead. And of course so many of my friends have left their jobs to take care of their sick kids, partners, siblings, etc.
For sure. I never wanted children but so many of my friends with Long COVID and ME have had to give up their plans to have kids because it’s just not possible when you’re this sick. So many of them who do have kids can only see them a half hour a day because they’re too sick to tolerate more. For
Yes absolutely, entirely agree
