Last week was ME Awareness week. Between the 6th and 12th of May, events were held all over the world to spread the word about what’s known as the ‘invisible’ illness, Myalgic Encephalomyelitis.
Leeds was one of the cities to host a Millions Missing protest. The event saw over one hundred supporters - some present in person, some taking action through the display of the shoes on show - each pair representing the missing people who suffer with the life-changing disease.
Other locations that held the event have taken place in Australia, South Africa, Denmark, Scotland and Canada, to name a few.
22-year-old Charlie Wainwright was the host and organiser of the Leeds event and she used this local platform to voice her experiences. In recent months she has dedicated hours upon hours of her free time to promote the event, to campaign for better funding for ME and raise awareness on the debilitating illness.
A sufferer of ME herself, Charlie was diagnosed at the age of 12, after being ill with many symptoms for a year. Despite her illness, Charlie has gone on to achieve a degree and secure a full-time job in journalism - a phenomenal accomplishment for somebody who has been in and out of hospital during her time studying. She used the same inspiring determination to organise the peaceful protest in Leeds over the weekend, and to be the voice for so many other people who are currently housebound - some even bed-bound.
Speaking at the event, she said: “I don’t want to be in a hospital bed, being IV fed, wishing I could attend such events like this. Instead, I want to be the person organising them. I don’t want to be ill in ten years time and know that still, male pattern baldness is getting more funding than the disease that might one day kill me.”
Currently, there is less than £1 per person with ME per year going towards research - a shockingly low figure, that when compared to the amount of money that male pattern baldness gets, is even further unsettling.
Charlie was joined by several other speakers who shared their stories on how they have dealt with the disease in their lives - either directly themselves, or through caring for others who are having precious parts of their lives taken away from them.
Martin Bates was joined by his four-year-old daughter Eva, and he told his story to the crowd on how ME has stolen many precious moments from his family, since it resulted in his wife becoming housebound.
He said: “My partner and the mother of my daughter, Eva - she’s been diagnosed with ME for 23 years. She’s 36-years-old.
“When I first met her about 9 years ago, we went on holidays… she was very active.
“I could list so many things that she used to do. And 2 years after the birth of Eva, she really got struck down.
“She’s now housebound… So she is missing.”
As well as providing an opportunity for people to share their heartbreaking stories of how ME has turned their lives upside down, the event also highlighted some of the key myths surrounding ME due to the misrepresentation by the media. Ask anyone if they know what ME is - most will not have heard of the illness, and those that have will probably assume that it is simply ‘something that makes you really tired.’
The fact is, the symptoms of ME stretch far wider than fatigue. Seizures, paralysis, migraines, IBS, nausea and tinnitus are just a small handful of the effects of ME that hundreds of thousands of people in the U.K face every day. But because of the lack of awareness, lack of education and lack of funding and research, these symptoms are often mistaken for other illnesses leading to incorrect diagnoses, which of course, only causes further problems.
Alex Sobel, Labour MP for Leeds North West also attended the event, and made a short speech highlighting how much more the government need to do in order to provide sufficient funding and research in to the illness.
He said: “I asked the secretary of state for health, who is Matt Hancock… In an area, how many cases of ME there are, and the response I got was ‘no assessment has been made.”
Closing the event, Charlie emphasised the demands of those supporting the Millions Missing campaign. She said: “With actions such as Millions Missing we demand the treatment and research that we deserve. Today we have over 100 supporters… we’ve also had way over 100 shoes - we have all had one goal, and that is health equality for those with ME.”
Some myths surrounding ME:
ME is not:
- A psychiatric disorder. Despite CBT and psychosis being common suggestions for treatment, ME is very much a physical illness, but is often mistaken for a psychiatric disorder.
- Being tired. The symptoms of ME do not stop at tiredness. Although sleeping problems, insomnia and extreme fatigue are all common symptoms of ME, nausea, poor concentration, migraines, muscle and joint pain, sickness and IBS are just a few of the other symptoms caused by ME.
- Only an illness middle-aged women get. Although females are more likely to be diagnosed with ME than men, it is not just middle-aged white women who suffer the disease. ME can affect anyone. Men, teenagers and children are also often diagnosed with the disease, and ME is the biggest cause of long-term absence in schools.
To find out more about the Millions Missing campaign, or to get involved with the events, go to: https://www.meaction.net/tag/millionsmissing/
Follow Charlie on Twitter to keep up with the amazing work she is doing: https://twitter.com/chaarlesx