Someone else wisely mentioned that a good way to get our ideas across to the media is to write directly to the journalists who have written the story, in this case on XMRV.
This keeps them aware of what is going on, rather than only reacting to press releases from sources as dubious as the CDC if they use the empiric definition or anything from Peter White using the Oxford criteria etc.
As we know, the WPI study used a cohort who fitted both the Fukuda CFS definition and the Canadian definition for ME/CFS. I don't think it's likely that the Canadian definition will be used by anyone else.
We have a pretty comprehensive list of reports about XMRV and ME/CFS on this forum, thanks to Summer and others.
I think we should write to as many journo's as possible who have reported on XMRV telling them to be aware of what may come out re possible non replication of results such as 95% positive to antibodies. I'm thinking that would be a way to get our side of the story in their heads before they write any new story.
This keeps them aware of what is going on, rather than only reacting to press releases from sources as dubious as the CDC if they use the empiric definition or anything from Peter White using the Oxford criteria etc.
As we know, the WPI study used a cohort who fitted both the Fukuda CFS definition and the Canadian definition for ME/CFS. I don't think it's likely that the Canadian definition will be used by anyone else.
We have a pretty comprehensive list of reports about XMRV and ME/CFS on this forum, thanks to Summer and others.
I think we should write to as many journo's as possible who have reported on XMRV telling them to be aware of what may come out re possible non replication of results such as 95% positive to antibodies. I'm thinking that would be a way to get our side of the story in their heads before they write any new story.