May 2019

“I am devastated to learn of Jen’s passing. There are tears flowing down my face as I type. Jen was such a force for good in our community.” Helen Hyland, ME Association.

“It is very hard to keep faith in a system which has failed to deliver meaningful support,” Phil Gawne.

“I strongly believe that if I’d received different treatment from doctors, I would not be as ill as I am today,” Jennifer Chittick

“I want to get better and lead a normal life. I didn’t choose to be ill like this.” Helen Wood.

“Research is the only way to get sufferers back on track and have the life they deserve.” Baz Hornsby

“You think about the person you could be but can’t. It is almost like losing your personality, losing yourself.” Milly Lowsley.

“This debate helps highlight how existing behavioural approaches and treatments are failing patients.” Carolyn Wilshire.

“Sometimes I feel like M.E. is all I am. But I am also a sister, a friend, a daughter, a partner, a colleague, a graduate and a police officer.” Stephanie.

“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.”