Overcoming barriers in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome research: The CureME participatory model, 2026, Abken et al

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Overcoming barriers in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome research: The CureME participatory model

Ella Abken, Caroline Kingdon, Sarah Tyson

Abstract
Research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) presents unique challenges. These stem from the logistical difficulties created by the degree of disability experienced and heterogeneous diagnostic criteria driven by etiological uncertainty. This is compounded by distrust of research institutions within the ME/CFS community, due to historical mischaracterization of ME/CFS as a psychosomatic disease.

This commentary proposes a framework to address the resulting methodological and practical barriers. The CureME Framework draws on the UK ME/CFS Biobank's extensive experience of participatory research and incorporates strategies for effective recruitment and data collection. It is informed by collaborations with individuals with lived experience of ME/CFS including severely affected individuals.

This is achieved by integrating co-produced study design, community-engaged recruitment, and adaptations that minimize the cognitive and physical burden of participation. This increases access to research participation, reduces selection bias, and strengthens cohort representativeness.

Adopting this approach may enhance methodological rigor, accessibility, trust, cohort representativeness, statistical power, and ethical integrity in ME/CFS research.

Web | DOI | Front. Hum. Neurosci. | Abstract only ahead of publication
 
I’ll be interested to see the full paper. I’ve been involved in a number of CureME projects over the years and interacted a lot with both Caroline and Ella, who seem to really understand and engage with patients well.

Andy clearly covers the experiences many of us have had with Sarah Tyson. Trust once lost is hard to rebuild, I wonder if this aspect and any lessons learned will be covered.
 
While I have the greatest of respect for Caroline and haven't had the opportunity to form an opinion on Ella that I can recall, for me, the levels of hypocrisy of Tyson being an co-author on a paper such as this is of the charts.
 
An article on co-production would be more credible if the authors had produced it together with patients.

Co-production is hard. You need to know your limits and be able to recognize what patients can contribute. You need to cede some of your power. You need good judgment because patient knowledge also has its limits.
 
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