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Our M.E. Meaningful Ending

M.E. (Myalgic Encephalomyelitis) is our series 14 campaign. Also known as C.F.S (Chronic Fatigue Syndrome), the condition affects 250,000 people in the UK, and 17 million people worldwide. 25% of sufferers are housebound or bedbound. The condition affects many body systems, but most commonly the nervous and immune systems. It causes severe persistent fatigue associated with post-exertional malaise, and the causes are still being investigated. Infections and viruses can trigger M.E., but it may also be triggered in other ways. M.E. is twice as common as Multiple Sclerosis and a report has estimated that is costing the UK economy over £3 billion in lost taxes, healthcare and benefit costs.

A severe systemic, acquired illness, M.E. is estimated to be 3 times more prevalent than HIV/AIDS, and 4 times as many women suffer from it than men. Clear clinical symptoms manifest predominantly based on neurological, immunological and endocrinological dysfunction. Before acquiring M.E. most patients were healthy, leading full and active lifestyles. Over-exertion can make M.E. worse, and the effects are often delayed and may not be seen within 24 hours. Symptoms can range from mild to very severe and can include: cardiac and cardiovascular problems, cognitive dysfunction, gastro-intestinal problems, headaches, hormonal imbalances, immunological problems, muscle weakness and intense pain, neurological problems and sleep problems.

While M.E. significantly affects the lives of a substantial number of people, there is still limited awareness and funding afforded to the condition. A 2016 report investigated this:

"The impact and cost of ME/CFS is high at a personal, economic and societal level, but levels of investment have been completely inadequate to address the fundamental causes of the condition and build the knowledge base required to inform better, more targeted treatments."

Despite the lack of funding, research has been done on M.E. However, there has been controversy around research that has been done. The most common form of treatment for M.E. is Graded Exercise Therapy, but this has been found to actually make some patients worse. A landmark £5 million NHS study into M.E. on exercise treatment (the PACE Trial) attracted heavy criticism for its “troubling use of data”. A Freedom of Information Act required the scientists involved to release their raw data, and a study by other researchers, published in the journal BMC Psychology, raised “serious concerns about the robustness of the claims” made about exercise and therapy. Therefore, there is a question not only about the amount of funding for M.E. research, but the use of the funding that has been offered.

We spoke to Carol Monaghan MP, who campaigns on behalf of the M.E. community. She said:

“People know very little about ME and consider it to be a condition that simply makes a person tired. I suppose this is typical – unless an individual has personal experience of ME, it remains very much an unknown condition…I have visited a number of constituents living with ME, and I have been shocked by the lack of assistance available…

It’s a positive step that NICE are now reviewing their recommendation of harmful exercise – however, their new guidelines are not expected until October 2020. There remains a huge need for quality research and education amongst the public and medical practitioners alike on the reality of living with ME and the best courses of treatment. If things are to improve, this research must be given proper funding, and any future guidelines must be drawn up through listening to people living with ME.” (Forward-ME) (M.E. Association website) (Jennifer Bea TED Talk) (NHS Guidance)

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