New technology will help patients get an earlier diagnosis for the debilitating but misunderstood disease

Technology is transforming research to provide hope for an earlier and more precise diagnosis of ME/CFS,  a chronically underfunded and poorly understood condition affecting more than 400,000 people in the UK and 17 million worldwide. 

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a debilitating multi-system disease triggered most often by a viral infection. Patients endure a raft of symptoms including profound exhaustion, brain fog, disrupted sleep, chronic pain, and cardiovascular dysregulation. In the most severe cases, sufferers are entirely bedbound, sometimes requiring tube feeding. 

Scientists at Duke University recently developed BioMapAI, a deep learning tool that maps gut bacteria, immune profiles, and patient symptoms to identify ME/CFS biomarkers with remarkable precision, bringing earlier and more reliable diagnosis closer to reality. 

Read more: New AI assistant helps NHS detect autism in young children

Read more: Patients on NHS waiting lists unhappy with lack of communication, new data finds

Dr Charles Shepherd, Honorary Medical Adviser to the ME Association, stresses that diagnosis within three months per the 2021 NICE guidelines and structured energy pacing are essential. 

“Only around 5 to 10 per cent of people with ME/CFS actually return to full normal health. Once you have this diagnosis, it is sadly likely to be a lifelong medical condition,” said Dr Shepherd.

He added that widespread gaps in GP training continue to leave patients without adequate care. 

Dr Rashmi Gaekwad, a Kent-based GP, said technology is helping to bridge that gap. “Patients who input their symptoms into an AI often receive a more accurate signpost towards ME/CFS than from a time-pressured GP appointment,” she said.

She supports the current NICE-recommended approach of energy management and pacing, which replaced the now-discredited graded exercise therapy. 

Technology is helping some patients to better “pace” and use the limited energy that is a hallmark of the condition. The Visible app tracks users’ symptoms and unlike a regular fitness app, encourages them to do less when they need to.  

After years of being overlooked, ME/CFS is receiving more research attention. The ME Association has invested £1.1 million in the Rosetta Stone Study at Imperial College London, the largest charity-funded ME research project ever, investigating shared biological pathways between ME/CFS and long COVID.

It runs alongside the DecodeME genetic study in Edinburgh, the world’s largest genetic study into ME/CFS. 

Featured image credit: Maria Wagner