I have been thinking about the need to have a centralised website (endorsed by many advocacy & charity groups) that can explain in laymans terms the research findings in ME. I think the ME PACE analysis on Phoenix is fantastic. It really breaks down the complexities of a scientific paper and illustrates the findings. I believe if we were able to clearly explain some of the main and most significant findings in a simplified manner we would be able to start to communicate the true facts about this disease. This website would be primarily aimed at targeting the press and public. It is the public perception that needs to be changed. Press releases pertaining to the disease could be published via this website. Therefore we would be creating a centralised location through which all scientists, charities, advocacy groups and medical professionals could release statements. We would then attempt to make the press aware of this site and endorsements by highly regarded ME charities and advocacy groups would demonstrate the unison of our community's voice. We need to identify key areas that different charities can agree upon, it is only by uniting voices worldwide that we will lay to rest the myths surrounding this disease. It would be great to hear any ideas, Thanks energy
Some of our ME/CFS orgs i think have been hijacked by the other side.. a big question I have due to that is Will we be able to get them to endorse such a site? (i guess if not it will show just how much they have been hijacked). I love this idea and its well worth doing.
