The Times: Sajid Javid promises radical action for patients debilitated by ME

By Sean O'Neill

Sajid Javid has promised a radical new approach to the debilitating illness myalgic encephalomyelitis, making the government a world leader in tackling what he called “an incredibly disabling condition”. The health secretary marked World ME Day yesterday by telling parliament he was “committed to better care and support for people living with ME and their families”.

Javid will lead the development of a plan for patient care and new research into the condition — also known as chronic fatigue syndrome (CFS) — which affects at least 250,000 people in Britain. “At the heart of the delivery plan will be two core principles; firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived experience of ME/CFS,” he said.

ME is a complex neurological disorder that causes fluctuating symptoms including prolonged fatigue, dizziness, muscle pain, gastrointestinal problems and brain fog. About 25 per cent of sufferers are unable to leave home. Javid’s remarks are the first time a senior government minister has spoken out about the condition, for which there is no diagnostic test, treatment or cure. It signals the emergence of new thinking on ME, which has been viewed by many in medicine for decades as a psychological or behavioural disorder.

Attitudes have been changing and the emergence of Long Covid — similar to much of ME, it is post-viral and has many identical symptoms — has driven a wave of research into both conditions around the world.

“ME/CFS affects the lives of children and adults across the country. It can be an incredibly disabling condition with fluctuating symptoms making it difficult to take part in everyday activities, enjoy a family or social life, access services and engage in work or education — especially for the estimated 25 per cent of people who have severe or very severe symptoms. Whilst there are currently no known cures or treatments for the condition, people with ME/CFS can be supported to manage their symptoms and maximise their quality of life.”

The Rt. Honourable Sajid Javid, Secretary of State for Health and Social Care.

He will be working with Professor Lucy Chappell, his department’s chief scientific adviser, to create a plan for research and better patient care. Javid said he was already talking to the Scottish government and would be liaising with the other devolved nations. His delivery plan will be published this year.

The health secretary also endorsed a report from ME patients setting out ten priority areas for research, ranging from developing a diagnostic test to why some cases become severe and whether there is a direct link with long Covid. Javid said:

“The government recognised that ME is an under-researched area and pledges to support research funders and the academic community to respond to this independent report. It is so important that the voice of those with lived experience of ME and those that represent them is at the heart of all future work to improve the lives of people living with this debilitating illness”.

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