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“I have shied away from anything that would remind me of that time, that illness; and I am absolutely terrified that my children will suffer with it.” Gabby Coles.

“I now have no regular social life to speak off and have lost contact with most, if not all, of my friends from my old life.” Gemma Corvalan.

“We kept our vows short, just a quick ‘I do’ really.” Emma Donnelly.

“I’ve had ten years of missing out on so many experiences, but also experiencing (enduring?) more than most people ever will.“ Jennifer Chittick.

“My mind is always foggy – once I forgot my own birthday. If you could feel death, I’d say it is living with this.” Milly Lowsley.

“It’s like having flu, tying lead weights to your limbs and attempting to do an Ironman.” Katy Beardsworth.

“My lovely Hanna-Lisa’s energy levels have gradually reduced over time due to her condition and she is now unable to work,” Kristian Legg.

“Living with ME is like waking up with the worst flu and hangover combined you’ve ever had in your life, every single day.” Nicola Ingram.

“Sometimes the inevitable pain and fatigue is just the price I have to pay to get things done.” Rog Warner.

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.

“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.

“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.

“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.

“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.