#MillionsMissing

red-shoes

Today, protesters are leaving empty shoes in public spaces in cities across the world to raise awareness of the debilitating illness M.E. The shoes represent the #MillionsMissing.

Millions of people worldwide, missing from the lives they want to live.

Millions of pounds/dollars/euros, missing from serious, rigorous biomedical research.

To find out more please visit meaction.net or millionsmissing.org

Or look out for empty pairs of shoes in your city, and say hi to the protesters!

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M.E. Awareness Week

Quotations on blue

It’s M.E. Awareness Week 9th-15th May in the UK, and International M.E. Awareness Day today (May 12th). M.E. stands for Myalgic Encephalomyelitis and is defined by the World Health Organisation as a neurological disease. There are 250,000 people living with this debilitating illness in the UK alone, of which I am one.

For many of us the illness was triggered by a viral infection, although there are other possible triggers. The best-known symptom is fatigue, sometimes severe fatigue, although this does lead to misconceptions about the illness. It’s not just about being tired! We have limited reserves of energy, and when we’ve used them up we get ill. ‘Post-exertional malaise’ – a delayed and prolonged reaction to activity – is a defining feature of M.E.

For me, the main problems are headaches/migraines and low blood pressure/dizziness. For others, symptoms include muscle and joint weakness and pain, light and noise sensitivity, and ‘brain fog’ (difficulty speaking or thinking clearly). M.E. varies hugely in severity – a few people lead an almost-normal life while others are bed-bound. Most of us are somewhere in the middle, but severely affected patients live with constant exhaustion and pain. M.E. also fluctuates – we tend to have good days and bad days, and on a good day it can seem to others as though there’s nothing wrong with some of us. If only!

This illness can vary greatly so it’s hard to do it justice in a short paragraph, and I know I won’t have described everybody’s experience (it’s not called a complex multi-system disorder for nothing!). The M.E. Association explains all this sooo much better than I can – please visit their website for more information on the condition and the current research, and to support their valuable work if you can.

Today’s artwork includes some of my favourite quotations, the ones that reflect my experience of, and attitude to, life with a chronic medical condition. Some of the quotes reflect the courage and kindness of my family and my M.E. friends. What words of wisdom get you through the day (and night)?

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