Scientists call for research hubs to solve mystery of ME

Ministers have been urged to end decades of underfunding in ME by ­investing in research hubs to work on finding a cure.

Academics and doctors from around the UK say they want to work together to find new treatments, including existing drugs used for other purposes, but need government funding to do so.

They have joined forces with health charities to propose a “national ­research platform” for ME, which would co-ordinate medical research from five hubs based at universities or hospitals.

Each team would have a different focus, such as research into causes, running clinical trials of new drugs, diagnosis and improving hospital care of patients bedbound with severe ME.

ME (myalgic encephalomyelitis), ­also known as chronic fatigue syndrome (CFS), affects about 400,000 people in the UK, but there is no diagnostic test or effective treatment.

Campaigners are critical of the dearth of spending on research. In this, the UK lags behind other countries, ­including Germany and the Netherlands, which recently provided multimillion-pound funding.

Sonya Chowdhury, chief executive of the charity Action for ME, said the condition cost the UK economy £23 billion a year, and fewer than one in ten patients were able to work full-time.

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Government investment in research for new treatments would “be more than paid off” over the long-term by helping people return to work and participate in the economy, she said.

“The historic lack of investment in ME research compared to other diseases is shocking,” she added. “We see a lot of government rhetoric on reducing the welfare bill and getting people back to work. Investing in research is a logical step to achieve this.”

She said the new research platform was a “prime opportunity” for the government to demonstrate its commitment to making the UK a world leader in life sciences. “We have scientists willing to help. We can access NHS data. We can utilise AI, technology and ­genetics. It is a huge opportunity to make significant advances in our ­understanding of ME, and find new treatments,” Chowdhury said.

The proposal, which has been submitted to the government, was signed by experts including Professor Danny Altmann of Imperial College London, Professor Chris Ponting of the University of Edinburgh, and Professor Sir ­Stephen Holgate of Southampton General ­Hospital.

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They said that owing to the historic lack of funding for ME, there was a “paucity of researchers willing to come into the field” and an “essential need for a different approach”.

A new research platform would build on the work of DecodeME, a £3.2 ­million project funded by the UK ­government, which has analysed genetic samples from 27,000 patients and is on the verge of publishing its first results.