On Saturday 12 May, there will be
demonstrationsand vigils across the UK and around the world, for millions of people ‘missing’ in the eyes of many. The events aim to make these invisible people visible – for more than just one day. They’re called the “Millions Missing”.
ME/CFS: chronic and debilitating
Myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as
ME/CFS, is a chronic
systemic neuroimmune disease. While symptoms vary for every person, people living with it often
experience:
- Chronic/severe fatigue, brought on by either physical or mental activities, or both. Often referred to as post-exertional malaise.
- Flu-like symptoms.
- All-over pain.
- Sleep disturbance/problems.
- Cognitive impairments.
- Impairments of the body’s autonomic systems, such as nervous, digestive and endocrine.
- Hypersensitivity.
Between 17 and 24 million people worldwide are thought to be living with ME/CFS; in the UK, it is around 250,000. But the disease has been fraught with controversy, not least because, for decades (and often still to this day), the medical profession has not properly recognised it. From talk of “
yuppie flu” to the notorious
PACE trial, people living with ME/CFS have been
disbelieved,
stigmatised, given
incorrect treatment or ultimately
told it’s ‘all in their heads’. But every year, an event fights to redress the balance.
