Our Summer Appeal has now closed. Thank you so much to everyone who supported us in creating change for people with ME!
Andy has had ME for the past 45 years. At first, he was mildly affected but is now housebound. He is passionate about the importance of research into ME.
The MRC and NIHR have only awarded the equivalent of £2.67 to ME/CFS research per person with ME (pwME), per year. This compares with the UK’s annual spend of £74 per person on health research. This needs to change.
We're calling for a strategic approach to research into understanding the scientific mechanisms of ME and associated post-infectious diseases.
“Change is extremely unlikely to happen without research, and so much needs to change to improve the lives of people with ME, and their families, carers and loved ones.”
Andy uses his experience of living with ME to inform and improve research into the condition, including as co-investigator and member of the Public & Patient Involvement Steering Group for DecodeME, the world’s largest ME/CFS study.
He also works with Action for ME as a PPI representative on the Genetics Centre of Excellence Partnership Board.
“I have enjoyed working as part of a team focused on increasing our understanding of ME, to have my colleagues respect and understand the limitations imposed on me by ME, and for them to value the lived experience of people with ME.”
Here at Action for ME, we ensure the lived experience of people with ME is central to any research. By supporting our Summer Appeal, you are not only helping to drive understanding into ME but also ensure people like Andy play a leading role in new and existing research studies.
“Action for ME has been absolutely crucial in ensuring people with ME are at the heart of the research that I have been involved in and has been essential in supporting me in those roles. If we want more research into ME with patients forming the heart of every study, then I believe supporting Action for ME is an excellent way to achieve it.”
