#MillionsMissing protest held in Leeds city centre to draw attention to the plight of ME sufferers

Dozens of people gathered in Leeds City Square on Saturday, May 11th for a Millions Missing protest, organised to raise awareness of ME.

Monday, 13th May 2019, 9:57 am

Surrounded by a semi circle of empty shoes to represent those unable to take part, both in the protest and in daily life, campaigners gave impassioned speeches and read poems.

Over 90 Millions Missing protests are happening globally (55 of which are in the UK), to raise awareness of ME and demand funding for research into the condition.

Charlie Wainwright, 22, who organised the event.

Sign up to our daily newsletter

The i newsletter cut through the noise

The neurological condition, also known as Chronic Fatigue Syndrome (CFS) affects around 250,000 people in the UK and millions more around the world.

Michelle and Lewis Mangham, 58 and 14 respectively, a mother and son who both suffer from the condition, had travelled from Bingley to attend the demonstration.

Mrs Mangham, diagnosed 9 years ago, explained how she felt unsupported by doctors as she tried to get treatment for her son who was only diagnosed in the past 6 weeks.

She said: "I am struggling to get him a consultant's appointment. No one is listening."

Shoes were lined up to represent the absence from life ME sufferers go through.

One of the treatments offered to ME sufferers is cognitive behavioural therapy (CBT) described by the NHS as "a talking treatment that can help the patient manage CFS/ ME by changing the way they think and behave."

Mrs Mangham continued: "Lewis can't access CBT because he doesn't meet the criteria for CAMHS (Child and Adolescent Mental Health Service).

"The CBT helps you deal with not having access to the life you've had before.

"We have to wait for the depression to set in before he will be eligible.

Those unable to take part left messages.

"We have nothing. I'm stable but Lewis is deteriorating, he hasn't hit rock bottom yet."

She had brought along a pair of heels she could no longer wear to represent the things her illness kept her from that she used to enjoy.

Campaigners want more funding to be put into researching the condition so it can be better understood and treatment for the physical symptoms can be developed.

Currently more money is spent annually by the government researching male pattern baldness than ME, which receives just £1 per sufferer per year.

The protest was been organised by Charlie Wainwright, 22, who lives in the city and became unwell with ME when she was 11.

She said: "The aim is to raise awareness. Often this is an illness confined to people's bedrooms.

"I spent two years out of school, bed bound and in a wheelchair.

"You feel isolated and your physical health deteriorates."

Miss Wainwright explained that it could be frustrating that people often assume ME is just tiredness.

"Tiredness is one symptom out of about 40." she explained, "When I'm ill my body rejects food, I become underweight.

"Over Christmas I was in hospital for two weeks and lost a stone and a half.

"I've actually been hospitalised several times and had to be IV fed."

Hattie Hodgson-Crome, 28, from Leeds, began suffering from ME in 2012 but wasn't diagnosed until 2016 when, after years of misdiagnosis from her GP, she herself suggested she might be suffering from the condition.

She explained: "When I first started experiencing symptoms I was 21 and everyone was out there living their lives and I was stuck.

"The day I got diagnosed was one of the best days ever because I finally had a label, it made such a huge difference.

"I could finally stop feeling like I was just being a bit pathetic."

Miss Hodgson-Crome had also experienced people thinking she was just tired.

"My heart rate leaps up to 150 when I climb the stairs," she said, "My legs give way.

"People never see me when I'm at my most unwell, I can't leave the house and I'm invisible.

"That's not just because I'm tired."

ME sufferers often feel that health professionals don't believe they are really ill, she explained: "I don't think there's anyone else with other conditions that have to work so hard to convince doctors their condition is real.

"We're told if you just believe you're better, you will be better.

"It's got to stop. People are dying."