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ME/CFS

Myalgic Encephalomyelitis/Chronic fatigue syndrome

About ME

Myalgic encephalomyelitis, also known as chronic fatigue syndrome or post viral fatigue syndrome, is a chronic debilitating disease affecting the nervous system, immune system, endocrine system and metabolism.

ME affects approximately 250,000 people in the UK, and between 17-30 million worldwide.

The hallmark feature of ME is post exertional malaise, an exacerbation of all symptoms after trivial exertion that can last for days, months or years.

No two people with ME will experience exactly the same symptoms, but commonly these will include severe, debilitating exhaustion, cognitive dysfunction, sleep disturbances, flu-like symptoms or susceptibility to virus', gastro-intestinal symptoms such as nausea or abdominal pain, sensitivity to light and sound, orthostatic intolerance (inability to stay upright), and intolerance of temperature changes. However this list is by no means exhaustive.

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There are over 14 different diagnostic criteria for ME. In the UK, ME can be diagnosed by a GP or consultant. They use the guidelines laid out by NICE in 2007, however these are currently being updated as they were deemed inadequate. The new guidance is due to be published in October 2020.

ME can affect people of any age, gender or ethnicity. About 75% of people with ME are women. 25% of people with ME are housebound or bedbound. Click here for more information about severe and very severe ME/CFS.

Research suggests just 5% of people with ME fully recover, however more make some improvement over time.

A new NICE guideline on the diagnosis and management of ME/CFS has been released in October 2021, after years of campaigning from patients and advocates. It contains important changes compared to the previous version. Find more info about the NICE guideline and how to share the information with your GP including a one-sheet summary here:

Be aware

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