ME/CFS: From Neglect to New Hope with Sonya Chowdhury

Episode 3 of Biology Matters: Solving Chronic Disease - a PrecisionLife podcast

Episode summary

Myalgic encephalomyelitis (ME), also called chronic fatigue syndrome or ME/CFS, has remained misunderstood, underfunded and too often invisible, despite its devastating impact on millions of people.

In this episode, Sonya Chowdhury, CEO of Action for ME, joins Steve Gardner to discuss the human and economic consequences of that neglect, and why there are now genuine reasons for hope.

They explore growing political and clinical recognition, advances from the DecodeME study and LOCOME project, the importance of involving people with lived experience in research, and how targeted investment could accelerate the development of diagnostics and effective treatments for ME/CFS, long COVID and related post-infectious conditions.

A full transcript is available to download here.

What you’ll learn

Why ME/CFS is far more than fatigue, and how post-exertional malaise, severe disability, isolation and inadequate care affect patients and families.
How the huge economic impact of ME/CFS and ME-like post-infectious diseases strengthens the case for greater government action and research investment worldwide.
Why advances in genetics and patient stratification are enabling more targeted clinical trials, reveal opportunities for drug repurposing and improve the chances of developing effective treatments.
How meaningful involvement of people with lived experience improves research design, participation, communication and the relevance of scientific outcomes.
What policymakers, healthcare leaders, researchers and industry can do to translate growing scientific understanding into better diagnostics, care pathways and treatments.