Power to the #MillionsMissing

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Today is International ME Awareness Day. M.E. stands for Myalgic Encephalomyelitis, defined by the World Health Organisation as a neurological disease. You may have heard it called Chronic Fatigue Syndrome or CFS. This debilitating condition affects millions of people worldwide, and about 25% of these are severely affected – profoundly disabled, housebound or bedbound, and living with constant pain and exhaustion. Some are so ill, they are fighting for their lives. In spite of this, research into ME is chronically under-funded, and sufferers encounter disbelief, ignorance and hostility, even from doctors. This is why your awareness and understanding matter so much. Please take any time you can spare to check out these links:

If you’ve got one minute, have a look at this colourful and powerful collaborative artwork on Facebook, the numbers representing the years the artists have been ill – Missing Years

If you’ve got five minutes:

If you have 20 minutes, please watch this inspiring TED talk by film-maker and activist Jen Brea, now watched by over a million people – What happens when you have a disease doctors can’t diagnose. Her debut documentary ‘Unrest’ premiered at the Sundance Film Festival earlier this year. There’s also an article about her here.

Finally, if you’ve got an hour and a half, spend it watching Julie Walters and Jim Broadbent at their best in ‘Wide-Eyed and Legless’ , a moving and surprisingly funny TV play, based on the true story of a woman with ME.

Oh, and if you’ve got money burning a hole in your pocket, please donate to one of the many brilliant support organisations and research projects. I have suggested some at the bottom of this post. But the point of my post today is awareness. Just by reading this, and knowing just a little bit more, you are helping ME sufferers chip away at a wall of ignorance and prejudice. If you know someone with ME, you will probably make their day by saying you read one of the above articles or watched the TED talk. Thank you so much for your time.

Today’s artwork is my first crack at Bob and Roberta Smith-style protest art. It’s a tribute to all the people with ME who are protesting and campaigning today, either on the streets or from their beds via social media. To find out more about the #MillionsMissing campaign, check out #ME Action. Why ‘Power to the Patients’? Because ME patients have been excluded from decisions about the treatment and research of their own disease, particularly in the UK, and with terrible consequences such as long-lasting damage from recommended ‘therapies’. It’s not acceptable in the 21st century.

Further reading:

The reality of severe ME

The role of sexism in the neglect of ME – ‘The toxic legacy of McEvedy and Beard’

Why current treatments harm patients

If you want to make a donation, TYMES Trust is a small UK charity supporting children with ME. The ME Association provides vital support and information to patients and doctors in the UK, and funds research. If you read the Washington Post article above, then you read about the ground-breaking Open Medicine Foundation at Stanford University. There’s also the aforementioned #ME Action, responsible for the game-changing #MillionsMissing protests.

Thank you for reading. If you have ME or are otherwise chronically ill, I hope today is a good day.

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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