Simon McGrath has written an authoritative blog about potentially the largest study of ME/CFS in the world!
This is a report following the recent meeting with Justin Tomlinson. Thank you to everyone who responded to our request for information.
These are the minutes from the Forward ME meeting held in May 2019.
Sjogren’s has important pathological overlaps with M.E. These results provide further evidence of a potential mechanism for chronic fatigue.
Bill Clayton shares his experience of loneliness and how this aspect of M.E. affects him and others in the community.
We’ve updated our central Research Index and feature 23 ME/CFS research studies from May 2019.
“Something needs to change. Help is needed from the top for that to happen,” Jonathan Vaughan.
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.