I thought last night that a barrage of letters to editors for personal opinion pieces in newspapers would get out the word about what having ME is like. I think people are glued to newspapers and other media. Is now a good opportunity to reach a lot of people and tell our personal stories and the science, or lack of, behind ME/CFS?
I've been thinking about this too, but I'm not sure it's the right moment. The news agenda's swamped, hundreds of people are dying each day, and far too many professionals are struggling to provide care with dangerously inadequate resources and protection. We can't really get into the story, and I'm not sure it's right for us to try. Later, maybe – when people still remember what it's like to be locked down, separated from loved ones, unable to access services, and feeling ill and exhausted for long periods?