I’m reading in social media that those with ME are being asked what research they would like to see done. Really ? What’s researched should be left to the experts, but with coordination so that there’s no duplication of research effort and waste of precious funds.
What we need is a proactive, combined national ME Media Group that gets us into mainstream national media on a regular basis. Only then will we get the Awareness, then belief followed by the funds needed for proper research. Currently there are too many ME charities, meaning hard won funds are too thinly spread to achieve any worthwhile research aims. Charities should be brought together to decide on priorities and remember that lives will continue to be lost until a major change is made to the way things are currently done. ME for 15 years now, and I can’t honestly say I’ve seen any change or progress.