Inspiring public involvement and #citizenscience work happening in #eczema #dermatology #skin ... Could this be a way forward for #MECFS and #LongCovid treatment trials too? And potentially all future National Institute for Health and Care Research trials?

.@GaryHickey16 has written a superb blog articulating EXACTLY what I think about public involvement. Stop endless studies trying to "prove" it's a "good thing". Of course it is. Do it more, in more innovative ways, and learn the most effective and efficient ways to do it

.James Lind Alliance partnership prioritized trials of drugs used to treat other conditions jla.nihr.ac.uk/priority-setti… (#2) We need funders like National Institute for Health and Care Research to support a large, pragmatic, multi-arm, randomized trial With treatments & outcomes specified by people with #MECFS #LongCovid

.DecodeME the ME/CFS Study Perhaps trial participants could be recruited from DecodeME participants? Would also be great to recruit to a treatment trial by searching for people with #PEM who have not yet been diagnosed with #MECFS and trialing potential biomarkers at the same time.

.National Institute for Health and Care Research James Lind Alliance DecodeME the ME/CFS Study Why not a publicly funded cluster randomized/placebo controlled trial? Integrated into NHS England NHS practice. Other treatments (e.g. Ampligen, LDN) could be tested too. #pwME #LongCovid

In this Viewpoint, @StuartGNicholl1 and Marion Campbell discuss the need to include patient and health care professional perspectives in the design of clinical trials to improve trial features and implementation. #JAMASummit ja.ma/3RTFCBz

I strongly believe the only way to move things forward is to work with medical colleagues to help them better understand ME/CFS and its impact. This work requires funding from ME charities & major Gov funders - I wrote to all 3 major UK charity directors to encourage this.