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:
- Read about the problems ME patients face in this article
- The same young woman gave another great interview to the Edinburgh Evening News
- Learn about the £5m UK government-funded research that has misled doctors and harmed patients around the world in this New York Times article – Getting It Wrong on Chronic Fatigue Syndrome
- Read about cutting-edge research and the deeply personal story behind it in the Washington Post
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.
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.