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

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

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!

I really appreciate it! :))

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

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

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)

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)