There has been little progress in enacting Needs Assessment Recommendations, and little adoption of Good Practice by doctors.

This meeting will discuss experiences of the current benefits process by people with M.E.

“Being diagnosed with ME was like a grieving process, grieving for the old me.” Gary Burgess.

We would like to hear about how you deal with loneliness and social isolation.

They’ve been raising money since 2006 – to honour Jim’s wife Maureen who’s had ME for 30 years.

“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.