"On May 25th, 2016 #MEAction is global day of action for equality for ME. ME patients, advocates, caregivers, and allies will join together to protest of the lack of government funding for research, clinical trials and medical/public education, leaving ME patients without relief." (#ME Action).
"#MillionsMissing is dedicated to the millions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. At the same time, millions of dollars are missing from research and clinical education funding that ME should be receiving. And millions of doctors are missing out on proper training to diagnose and help patients manage this illness." (#ME Action)
Events are taking place in Washington, DC, London, Belfast, Atlanta, Boston, Dallas, Philadelphia, Raleigh, San Francisco, Seattle, Melbourne, Ottawa (virtual) and online.
The UK protest is taking place at Richmond House in London. Richmond House is where the main Department of Health is located. Empty shoes are going to be placed to represent the millions of people who are missing out on a life because of ME.
I have been too worn out to find and send a pair of shoes for the protest, so have taken this picture to mark the occasion
These are my slippers the shoes I wear the most, missing out on real life and real shoes. #MissingMillions
People are also being asked what they are missing because of the ME/CFS.
- I am missing nearly 20 years of normal life.
- I am missing out on being a normal Mum, wife, daughter etc (I have never been a well Mum or Wife)
- I am missing out on being able to work and earn my own money
- I am missing being independent and doing things for myself and my family.
- I am missing being able to walk
- I am missing being able to use public transport and travel
- I am missing being able to look after my own house and have things the way I like.
- I am missing being able to use my brain and use the qualifications I worked hard for.
- I miss being having a whole day to be able to do things (rest times are essential)
- I miss not being able to drive when and where I want to.
- I miss being able to cook and bake.
- I miss nice normal food (due to food intolerances)
- I miss being able to read a book and know what is happening.
- I miss being able to watch TV and take in the programme.
- I miss being able to care for people and help people.
- I miss my energy, my stamina
- I miss being able to have fun
- I miss happiness, joy and laughter
- I miss my concentration and understanding
- I miss the outside world ( I can get out, but it's very limited and has to be for essentials like the school run and appointments)
- I miss my health, I can't remember what a day without symptoms feels like
The list could go on much more, but it's long enough and I hope gives some idea of what people with ME miss out on. Every ones list would be different as symptoms and abilities vary so much. The one thing we are all missing out on is an understanding of the condition and effective treatments. So much is understood about other conditions and treatments are amazing. ME/CFS feels like it is forgotten and ignored. It's just not a high priority as it is not normally life threatening or widespread enough to warrant attention.