Chloé de Canson

L’annonce du plan?

What a great paper—thank you C for posting about it!!

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 r...

Great comment from @jefflubellc19.bsky.social in @annfammed.bsky.social.

He argues for the value of patient and caregiver observations and hypotheses, saying journals should publish more case studies and hypothesis papers from those groups.

Feat. @patientled.bsky.social!

#MedSky #MECFS #hEDS

I remember that when Alice won the MacArthur grant, she tweeted out the news with a long thread about the occupation of Palestine and the genocide in Gaza. She used every opportunity she could to bring people’s attention to it

Exactly, and I’d go even further—imagine if all Long COVID studies, including pathophysiological research, meaningfully integrated patient feedback at the design stage… we’d be so much further along

We—and you in particular!—sure are, and what a source of pride it is to be part of this community

Science Denial Cambridge Core - Philosophy: General Interest - Science Denial

My Element on science denial is free to download until December 1st! Get it for free while you can!

doi.org/10.1017/9781...

This trial enrolled this many participants this quickly because it’s designed to meet the needs of people with Long COVID, and it’s this well designed because it was designed by the amazing @julialmv.bsky.social who lives with Long COVID herself

Patient participation in research is essential

Weight-Loss Drug Zepbound Is Being Tested as a Treatment for Long Covid GLP-1s are being studied for a wide range of conditions. Now, scientists will test whether their anti-inflammatory properties can help alleviate symptoms of long Covid.

LoCITT-T trial was covered by Wired today:
www.wired.com/story/weight...

My comments include:
"For the long Covid population...if you’re requiring people to come into a clinic, you’re systematically excluding the most severely affected folks who are housebound or bedbound."

I’m so sorry. I lost all but about 15 foods—basically root vegetables, red lentils, fish, and a few meats. I haven’t tolerated anything else in years at this point. I tend to talk about other aspects of the disease (im also bedbound) but this really, really sucks

Absolutely. We know that not everyone responds to interventions, so it’s super important for trials to do responders analyses once they’ve identified the impact of the drug on participants. But in order to even identify the impact, they need appropriate outcome measures—that’s what we focus on here!

On this day thirty-two years ago. The Harlow Star, England. 11th November 1993. #mecfs #cfsme #myalgicencephalomyelitis #myalgice

I really appreciate it! :))

Oh wow that’s very cool!!! i think our paper is available for free with registration, right?

Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease Long COVID is an umbrella term for the heterogeneous long-term consequences of SARS-CoV-2 infection. It encompasses a wide spectrum of phenotypes (sometimes overlapping), and its underlying mechanisms...

New Comment

Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease

www.thelancet.com/journals/lan...

Thank you so much for your kind words Catherine :))

Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease Long COVID is an umbrella term for the heterogeneous long-term consequences of SARS-CoV-2 infection. It encompasses a wide spectrum of phenotypes (sometimes overlapping), and its underlying mechanisms...

The paper is available to read at: www.thelancet.com/journals/lan...

Thanks to my wonderful collaborator Lara Goxhaj, and to the entire author team @lisamccorkell.bsky.social, @fvrhijn.bsky.social,
@leticiasaurus.bsky.social, and @julialmv.bsky.social. And thanks to @michaelpelusomd.bsky.social for comments on an early draft. (12/12)

We conclude that the creation of a set of questionnaires, in partnership with regulators and in deep dialogue with the community of people with Long COVID should be a priority in the field. (11/12)

Some options already exist but none of them evaluates all of the following concretely and comprehensively: PEM-induced functional impairment, dysautonomia, food and environmental sensitivities, cardiovascular dysfunction, and neurological dysfunction. (10/12)

Moreover, many people with Long COVID do not meet the diagnostic criteria for ME.
We need a set of questionnaires (to supplement non-questionnaire measures) that can assess disease severity across all
phenotypes. (9/12)

We recommend urgent research on whether the FUNCAP can serve as the
questionnaire of choice for the ME phenotype of Long COVID. We also suggest that trials use this questionnaire as an exploratory outcome measure in the meantime. (8/12)

Home - funcap.no FUNCAP is used to assess functional capacity in patients with diseases where post exertional symptom exacerbation (PEM, PENE, PESE) is present

The FUNCAP questionnaire, designed with extensive patient involvement, measures with concrete benchmarks the severity of functional impairment across a number of relevant dimensions (physical, cognitive, sensory, orthostatic). (7/12)

www.funcap.no

But there are two problems with this:
1) the hallmark of ME is PEM, not fatigue
2) how fatigued people feel is subjective
This is why people with ME prefer to describe the severity of their disease in terms of how much they can do. (6/12)

One well-defined Long COVID
presentation is ME (myalgic encephalomyelitis). ME is sometimes evaluated using fatigue questionnaires, questionnaires that ask how fatigued people are. (5/12)

So, which questionnaire should we use in Long COVID trials? This is a very tricky question because Long COVID is highly heterogenous: it can present in a lot of different ways. So, we need a set of questionnaires that can cover all presentations. (4/12)

In Long COVID, outcome measures are almost always questionnaires. But if questionnaires don't ask the right questions, someone might improve a lot from the drug but this might not be picked up by the questionnaire. (3/12)

A number of highly anticipated Long COVID trials have recently reported negative results: see their phenotypic eligibility criteria and the outcome measures used in the table below. (2/12)

THE LANCET Infectious Diseases COMMENT • Online first, November 07, 2025 Negative results in long COVID clinical trials: choosing outcome measures for a heterogeneous disease Lara Goxhaj • Lisa McCorkell • Femke van Rhijn-Brouwer . Letícia Soares . Julia Moore Vogel . Chloé de Canson

Many Long COVID trials have reported negative results in 2024 and 2025. In our Comment for @thelancetinfdis.bsky.social we argue that inadequate outcome measures might have played a role. (1/12)

Crossing my fingers for the election and thinking of you 🤍