Leeds campaigner, 24, launches website to fight for the plight of those with ME
When Charlie Wainwright tells people of her major health struggles she first describes her shocking symptoms - and leaves the name of her condition until last.
That’s because, she says, for a long time, myalgic encephalomyelitis - or ME - has carried it with it the "dumb stigma" of being “all in your head".
This is something she is determined to tackle, along with fighting for better health equality and treatments for other sufferers and for her own future.
In 2019, her activism saw her organise the first Leeds protest as part of the global #MillionsMissing movement, to raise awareness of the plight of those with ME.
And now she has launched her own website https://me-and-me.blog/which she hopes will act as a much-needed base for people in Leeds and Yorkshire with ME.
Within five hours of going live, the site had attracted over 250 visitors from countries across the world.
Charlie said: "It's been going really well. I find it really exciting that I’m able to connect with people and offer them that space for support and information.
“ME doesn’t get the support it needs so to be able to offer that to people just makes me really happy.”
ME is a neurological condition which causes pain and chronic tiredness and affects an estimated 250,000 people in the UK, which is thought to equate to around 7,500 in Leeds alone.
Charlie, now 24, was 11 when she was diagnosed and spent the next 18 months out of school, mostly bed-bound or using a wheelchair.
Today, her condition is managed through medication but her daily symptoms include joint pain, vomiting and fatigue.
And any severe infection can land her in hospital - with four admissions in 2019 alone - as her immune system goes into overdrive.
Charlie says she considers herself “lucky” for having incredible doctors as well as family and friends but she says too many others do not have the same experience - and more needs to be done to fight for recognition, education and research for those living with ME.
Charlie, who works as a researcher for a TV production company, said: “For a disease which affects 250,000 it’s amazing that so many people don’t seem to know about it and there doesn’t seem to be the funding to get the answers that people so desperately need.”
However, she hopes the current links being drawn between ME and the symptoms of long Covid will help shine a light on the chronic illness community.
She said: “ME is normally triggered by people picking up an infection and the similarities between long Covid and ME are only going to grow. If we can help to join together with people who are suffering from that, that’s only going to help.”
Having shielded throughout the first lockdown, Charlie has now had her first vaccination - thanks to her “amazing” doctors - and, as well as gearing up for next #MillionsMissing event, on May 12, she plans to continue to raise awareness of the website in the hope of reaching as many people as possible.
“An article goes live once a week with a bit about local activism that’s going on and once a month there will be a personal story shared by someone in Yorkshire living with ME.
"My hope is to continue to grow the support and sense of community for people with ME in Leeds.
“When I first started living in this city, I didn’t feel there was enough support for people with ME so I think having one place where people can see the latest activism and latest news and access everything they need to is only a good thing.”
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