I think we should be doing more. We should be suspicious of the power of the CDC PR machine.
I think a fund should be started to take out a full page ad in the Washington Post with a letter to the American Public from ME/CFS patients telling them that their government is supressing information which confirms a link from XMRV to ME/CFS. I think the letter should be written concisely without emotion. Several paragraphs, just enough to explain what is going on. Every advocacy organization who wants to be a part should sign on to that letter, and start pushing towards funding that ad. It should be stipulated that if the paper is published before funding for the ad is complete, that the letter should slightly change to inform joe and jane public of that association. This is not 1993, and with the power of the internet, together with funding a well written letter as a full page ad in the right paper we could blow the lid off of this.
We do not have the energy or mobility like ACT up for demonstrations. Our advocacy organizations need to start acting together, staying on message, and co-ordinating their message to the public.
Monroe's comment to the NY Times was an insult. We are not well organized. If we were, a full page ad detailing this entire scandal would have run in the Washington Post, the NY Times, and the Wall Street Journal on July 6th. American Joe and Jane public would have been spitting out their java at reading there's a new retrovirus in town.
But that didn't happen.
One organization needs to step forward to set up a PR fund and the heads of all advocacy organizations for ME/CFS need to co-ordinate to fund it and run it.
It needed to happen 20 years ago, but yesterday will do.
At the end of the day, even with all the research in the world, this is still a Public Relations fight. It's time we fought it.
Time for the leadership to step forward. Time for patients and their carers to put their money into PR. This chance may never come again.