There are many people doing marvellous work to raise the profile ME/CFS. One such individual is Lizzie Guntrip who is a young naturalist who promotes access to wildlife for the sick & disabled in Britain
She has appeared on the BBC's Springwatch programme and was featured by the Royal Society for the Protection of Birds (RSPB). The RSPB is the largest member organisation in the country (much more than any political party) so along with her BBC appearances, she is able to reach a lot of people and tell them about ME/CFS.
You can find Lizzie on Twitter. I am sure you will encourage her (@lizzieguntrip)
Lizzie on the BBC website
RSPB article about Lizzie