Treatment for ME has turned a corner - the UK must not leave patients waiting
Let’s make this the decade we finally develop treatments for this condition, writes Sonya Chowdhury
For too long, those living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have had to live with disbelief.
Listen to this article
2025: A breakthrough year for ME, but we must go further
Too many people – including, devastatingly, many medical professionals - have dismissed it as ‘all in the mind’. This characterisation is hurtful and damaging to those who experience the reality of the condition – either living with it themselves or caring for someone who is.
ME is a profoundly debilitating, chronic illness that affects multiple systems within the body. There are an estimated 1.35 million people in the UK with ME or ME-like symptoms, including post-exertional malaise: the hallmark symptom of ME.
Over the past three years, Action for ME partnered with the University of Edinburgh on the DecodeME study – the largest of its kind ever undertaken. It identified eight genetic signals where people with ME differ from those without. Building on that, PrecisionLife – in partnership with Action for ME and the University of Edinburgh – identified over 250 genes that may increase the risk of developing ME. LOCOME, the study in question, also found some overlap with long Covid biology, with 76 genes linked to both conditions.
This could be groundbreaking.
What these findings offer is hope. Hope for people living with ME around the world that the condition is being taken seriously, and hope that further research into proper diagnostics and effective treatments will now be forthcoming.
It’s a step in the right direction, but this is just the beginning. The DecodeME study uncovered the X on the treasure map – what LOCOME has done is help dig deeper and has identified overlaps between ME and long Covid.
But we must keep building on this work. If funding for ME research were equitable with other illnesses, £18.5 million of the £5 billion spent annually on health research in the UK would be allocated to the disease. Over the past 10 years, only £8.05 million has been spent on ME research.
By way of comparison, Germany has just announced 500 million euros in research funding for ME and long Covid over 10 years. This announcement recognises the importance of undertaking further research into these conditions.
The UK should be harnessing our world-leading life sciences sector to complement the investments made by our European neighbours and ensure this vital industry remains at the forefront of global research.
It has been a year of unprecedented discovery for ME/CFS, and we want to see more of the same in 2026. That is why Action for ME is calling for the creation of a Strategic Research Hub for ME, to ensure that recent scientific progress translates into meaningful treatments.
2025 is the year we proved that ME is based in biology. Let’s make this the decade we finally develop treatments for this condition, for the sake of all those who live with it.
____________________
Sonya Chowdhury is CEO of Action for ME.
LBC Opinion provides a platform for diverse opinions on current affairs and matters of public interest.
The views expressed are those of the authors and do not necessarily reflect the official LBC position.
To contact us email opinion@lbc.co.uk