In-depth analysis of research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Joined October 2016
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1) There's a new critical review of patient-reported outcome measures in ME/CFS and Long Covid.
The paper argues that trials often fail to include important symptom domains such as post-exertional malaise, dysautonomia and mast cell activation symptoms.
9) The paper also mentions that hardly any trials consider mast cell activation symptoms such as pruritus and flushing.
For non PROM outcome measures it recommends to include return to work and actimetry and also to assess re-infection with Sars-Cov-2.
10) Link to the paper (open-access):
van Rhijn-Brouwer et al. Outcome measures in long COVID clinical trials: a review.
frontiersin.org/journals/pub…
Always great to see the ME/CFS field growing and attracting new talents.
1) 🇦🇹 Matthias Wielscher's group is recruiting two fully funded PhD candidates to work on ME/CFS through the Medical University of Vienna’s international PhD programme.
The two projects have a shared goal: understanding the biological and clinical heterogeneity of ME/CFS.
4) Apply by 22 November 2026. Applicants living with ME/CFS are very welcome to apply: lived experience can bring an important perspective to the research.
5) More info about the projects has been shared on S4ME:
s4me.info/threads/austria-ma…
1) Another interesting presentation at the 2026 PRIME International Consortium by Dr. Matthias Wielscher.
He only talked about this briefly but it looks like his team did an analysis of rare mutations using the All of US and UKBiobank cohorts (DecodeME used common variants).
4) So perhaps this links to the CRH findings in the brain autopsies and the pituitary enrichment in the GEM meta-analysis.
(The image below isn't from the presentation but from the Human Protein Atlas, showing C2orf66 is mostly expressed in the adrenal gland and pituary.)
5) This looks like it might be another interesting lead to follow-up on in the ME/CFS field.
The full presentation by Wielscher is available on Action for ME's YouTube channel:
youtube.com/watch?v=tLaZ2Uie…