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!
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/
Thanks for mentioning treating the drivers rather than symptoms. Great way to conceptualize giving care.
You wait for the breaths to come. I counted them. Mine was intermittent, typically when other symptoms flared. Speech therapy and the SGB helped me move past it.
I had this symptom during early days of LC. It is terrifying.
Random take: leggings should be considered reimbursable medical expenses for people with dysautonomia/POTS. See also compression socks.
Out today - our recommendations for Long COVID clinical trial design, focusing on currently available outcome measures:
www.sciencedirect.com/science/arti...
We make 5 overarching recommendations for Long COVID clinical trials:
1) thorough characterisation of baseline disease
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Yes! I have been so grateful to learn from the clinicians here. The feedback loop between researchers and clinicians is woefully lacking.
And if you're here in Boston, please say hi! I'm the person with purple hair wearing my mask of choice, the Dräger :)
I am speaking tomorrow at the 3rd Long COVID International Conference about models of care! What do you want researchers and clinicians to learn about models of care?
Super easy prevention: wear a mask.
“Preventative action is urgently needed, otherwise there’s a risk that we set our young people onto a path of ill health through the rest of their lives. This would be a sad loss of potential for the individual and the economy.”
We have the evidence of the protective effects for neurodegenerative disease. It’s time to lower the age restrictions.
Just the concrete tips of David Keegan from University of Calgary on how to use “familiar” data in clinical practice could be game changing for patients. #lcwsymposium
I truly wish I had the spoons for posting all the amazing content today about health systems and service delivery for LC at #LCWSymposium
Another day, another round of “I can’t believe this needs saying”:
Observing a condition in clinic is *not* lived experience of that condition, and trying to claim it as such is an outrageous appropriation.
Clinicians have no shortage of authority. Do not grab for the crumbs left to patients.
Dr. Yonkers: “I do think this [testing for POTS, PEM, LC] can be done in the primary care office…keep it close to home.” #lcwsymposium #longcovidkids
Part of this includes ruling out other symptoms, as well as assessing for PEM and testing for POTS, other autonomic issues. #lcwsymposium #longcovidkids
Dr. Yonkers: right now we’re in treatment of LC symptoms, which I have learned much from ME/CFS colleagues. #lcwsymposium #longcovidkids
Dr. Yonkers: “We want kids to get better, but we can’t wish it upon them.” #lcwsymposium #longcovidkids
“We need to be careful” when we discuss and diagnose children. #LCWSymposium #longcovidkids
Lael Yonkers from @mgbresearch.bsky.social on MIS-C in kids: 60% of children improve after 2 years, but there are still 40% of children whose symptoms do NOT improve. #LCWSymposium #longcovidkids
My take: if you think your kid has Long COVID—ask your kid’s doctor!! #lcwsymposium
AND she stresses: kids are more likely to be diagnosed *if their provider is asked about Long COVID.* #lcwsymposium #longcovidkids
Dr. Yonkers: there is a better chance for a child to be diagnosed with Long COVID if they miss school or have a facility member. #lcwsymposium #longcovidkids
Day 2 of #LCWSymposium! First up: keynote from Lael Yonker, the Director of the COVID-19 Pediatric Biorepository at @mgbresearch.bsky.social and professor at @harvardmed.bsky.social
From Shlomit Rosenberg from @utoronto.ca on episodic disability research: spirituality was strongest association among energy restoration activities. Not necessarily religion or meditation, but connection to art and nature as well. #LCWSymposium
For example, there is little in the LC literature about getting back to work. In clinical practice, getting back to work is found to be incredibly important for LC patients.
Important point by @kellyobrien25.bsky.social on LC research: just because something has not been measured does not mean that it is not important. #LCWSymposium
My take: it’s not just guidelines and protocols that matter in LC healthcare.
We know that LC presents heterogeneously.
Personalized care with compassionate clinicians who are knowledgeable and can appreciate the “unknowns” is essential for symptom management. #LCWSymposium
After 3 months, patients reported they were more likely to engage in usual activities, fewer missed workdays, and lower private health care expenses.