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ME sufferers highlight lack of support and funding

ME affects more people in the UK than MS does – three-quarters can’t work because of it

Louise Prime

Tuesday, 27 September 2016

People in 24 cities around the world, including six in the UK, are today protesting at the lack of support for people with myalgic encephalomyelitis (ME – ‘chronic fatigue syndrome’) in their school, work, family and social lives. They are demanding increased funding for both research into ME, and for better medical education about the disease, as well as trying to raise general awareness.

The campaign group #MEAction, an international network of ME patients, has calculated that there are millions of people across the world living with ME who are “actively and indefinitely missing from their childhood, their adolescence and their adulthood; their education, their careers, their social lives and their ability to contribute to society”. It claims that ME remains a stagnant orphan condition, missing millions of pounds in funding for research and treatment, and missing millions of doctors, researchers and specialists to assist sufferers in their everyday lives. It insisted: “At a time where more and more lives are being lost to this disease, both young and old, this complacency must and will change.”

ME, a systemic neuroimmune disease characterised by post-exertional malaise, causes dysregulation of both the immune system and the nervous system to often devastating effect. About 75% of sufferers are reported to be unable to work as a result of their symptoms, and 25% to be housebound or bedbound.

Today’s #MillionsMissing rallies are taking place in London, Cardiff, Belfast, Bristol, Oxford and Nottingham, as well as elsewhere in Europe, Australia, Canada and South Africa. Activists will display rows of empty shoes to represent some of the millions of people worldwide whose debilitating ME symptoms mean they are missing from their schools, careers, social lives and families.

#MEAction has estimated that 250,000 people have ME in the UK alone, making it 2-3 times as prevalent as multiple sclerosis. Among these, are about 25,000 children; ME is the most common reason for long-term school absence. Despite this, said the group, there has been little funding for research into its cause or treatment, with virtually no biological research taking place. It claimed that what little funding there is, is almost entirely focused on work that promotes a behavioural model for ME, in particular the large but controversial ‘PACE Trial’. #MEAction said it is “outraged over the continued lack of research funding and the absence of medical education”.

Leader of #MEAction Network UK L.A. Cooper said: “We’re living with a complex, multisystem disease in the 21st century that is being approached with medieval attitudes”. She argued: “The biological evidence is out there and it’s time to acknowledge its presence. Patients are being systematically rejected adequate treatment based on poor investment, poor knowledge and poor science. It’s a human rights issue that must be addressed.”

Jen Brea, co-founder of #MEAction, added: “For too long, people living with ME have been missing from their lives – from their careers, their family and friends, their daily routines – but that time is over. We need real investments in research to guarantee that people who suffer from this disease will no longer be relegated to the shadows.”

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