Why ME/CFS Has Been Neglected for Decades - And Why That's Finally Changing
July 15, 2026
Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, affects an estimated 17 – 24 million people worldwide, with many more experiencing ME-like symptoms after infections such as COVID. So, why does the disease remain poorly understood, difficult to diagnose and deeply isolating? In this episode of Biology Matters, host Steve Gardner speaks with Sonya Chowdhury, CEO of Action for ME, about why ME/CFS has remained invisible for so long, how patient advocacy is helping move research, policy and clinical understanding forward and why better funding, better diagnostics and precision medicine could help shift the field from recognition to real treatment options.
Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a serious, life-altering disease that affects an estimated 17 – 24 million people worldwide, with many more living with ME-like symptoms following infections such as COVID. For patients and families, the impact can be enormous: persistent exhaustion, post-exertional malaise, pain, cognitive dysfunction, and in the most severe cases, being housebound, bedbound or unable to manage daily living tasks. And yet, awareness about what it is lags behind, let alone treatment options.
In this episode of Biology Matters, Steve Gardner speaks with Sonya Chowdhury, CEO of Action for ME, about why ME/CFS has remained so under-recognised, despite its scale and severity. Sonya explains that the disease often makes people invisible, because those most affected may be too unwell to leave their homes, attend appointments, work, study or maintain social contact. The conversation explores the importance of advocacy, collaboration and patient involvement in changing that reality.
What You'll Learn:
- What ME/CFS is and why post-exertional malaise is such a defining feature of the disease
- Why ME/CFS and ME-like symptoms after COVID affect such a large number of people
- How invisibility and isolation shape the patient experience
- Why advocacy for ME/CFS depends on listening, collaboration and persistence
- How patient involvement can make research stronger and more trusted
- Why the economic case for better ME/CFS research and care is so significant
- How the DecodeME study, LOCOME project, and precision medicine approaches are changing what is possible
- Why dedicated funding could accelerate diagnostics, drug repurposing and clinical progress
About Steve
Steve Gardner is CEO and Co-Founder of PrecisionLife, recognized for his expertise in mechanism-based biology and its application to chronic disease management. With over 25 years of experience in life sciences and informatics, he has contributed to the Human Genome Project, led over 30 drug discovery and development initiatives, and built multiple healthcare and AI technologies from concept to market. His work bridging computational biology with clinical translation has positioned him at the forefront of precision medicine for complex chronic conditions.
About Sonya
Sonya Chowdhury is CEO of Action for ME, a UK charity working to improve the lives of children, adults and families affected by myalgic encephalomyelitis, also known as ME or ME/CFS. She works at the intersection of patient advocacy, public policy, research, fundraising and healthcare, helping build understanding of ME and improve recognition of the needs of people living with the disease. Her background in child protection social work has shaped her collaborative approach to advocacy, which is grounded in listening, partnership and championing the rights of people who are facing disadvantage, inequity and injustice. Through Action for ME, Sonya has helped keep patient experience at the centre of research, policy and public awareness, while supporting efforts to improve diagnosis, care, funding and scientific understanding for ME and related post-infectious conditions.
Episode Resources:
Sonya Chowdhury on LinkedIn
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