Helen is doing the best she can to still live her best life. It can be frustrating, upsetting and overwhelming at times, but she’s trying.
Category Archives: News
ME Awareness: ‘My daughter, 21, who died weighing 5 1/2 stone, had ME on her death certificate – yet some still say it’s not real’ | 06 May 2019
“A neurologist even said “ME is not a real disease.” The medics made her doubt herself and feel ashamed.” Clare Norton.
“We want to tell the world about the Real People that suffer because of this Real Disease – day after day, week after week, year after year, and in some of the cruellest cases, decade after painful decade.”
“It is time for egos to be put aside, for the science to be listened to, for patients to be listened to and the Hippocratic Oath to be remembered – first, do no harm.” Clare Norton.
ME Awareness: Bridgwater mum explains how ‘painful’ ME makes her feel like ‘a prisoner’ in her own body | 05 May 2019
“I now live my life mainly housebound. The same four walls day in, day out, drain any positivity you can try and muster.” Hayley Date.
“One of the most heartbreaking cases I’ve dealt with was an eight-year-old girl who was forced to have GET. Her parents were told that if they didn’t comply, she’d be taken away,” Dr Nigel Speight.
ME Awareness: Woman with ME says she feels like a ‘100-year-old trapped inside a young person’s body’ | 05 May 2019
“At my worst it didn’t feel like much of a life – just an existence waiting for a cure.” Hannah Grundy.
“Winter Hill is a personal and powerful documentary short film by filmmaker Lee Gray.” FilmsShort.
Eastern Daily Press: ‘I have a devastating illness, so why do doctors doubt my struggles?’ | 03 May 2019
“All we, the ME community, want is fair treatment and a chance for a future.” Jo Moss
John Martin has written 3 children’s books and Just for ME is his first novel. His daughter has suffered from M.E. for 26 years and was his inspiration.
We’ve updated our central Research Index and feature 15 ME/CFS research studies from April 2019.
What does this special week mean to you? What issues do you believe should be the focus of ME Awareness Week?
“My M.E. pictures reflect the experience of so many of us. I want us to be visible. Don’t you?”
“We clearly see a difference in the way healthy and chronic fatigue syndrome immune cells process stress.” Dr Ron Davis.
Four independent groups have now found that a factor in the blood can affect cell metabolism/mitochondria in ME/CFS.
“There is little scientific credibility in the claim that the psycho-behavioural therapies should be primary treatments for this illness.”
“If fundraising has been sitting in the back of your mind lately, now’s the time to give it a go.”
Teen housebound by ME fined by school for being ‘truant’ – now benefits assessor says she’s not in enough pain | 26 April 2019
“Having to battle all the time to be believed takes its toll.”
We are proud to announce our first team of people walking to raise funds in Scotland’s Kiltwalk!
A new ME-themed clothing and bag-range available to purchase online.