hi,
i really think the Wash dc idea is great, but the travel is near impossible with our level of health. that kind of trip would kill most of us. staying at a hotel would too.
i think one idea is to see if the northern VA CFS group wants to organized this idea of yours, stone, and have them do it, as they are already in WDC. i can put you in touch with the woman who runs the VA CFS group, so you can ask her if she wants to do this...? it is a well organized group.
what i like about the blood banks and blood drives is this: they are everywhere and happening all the time. we could go on any day we are well enough to go. we don't need to organize it too much in advance. we just need the local newspaper's reporter's email and phone in advance, and we need to teach them in advance about CFS and the politics, and then tell them we will be doing this demonstration one day soon. then call them the day we do it, and hopefully, no assurance of course, but hopefully they will send a reporter and photographer.
i see this as actually having more of an impact than a single demonstration. i know others will not agree with me. but surely the nih will hear about these mini demos, if we have a few of them around the country. and i really think this is more doable for us CFS folks than a travel to Wash DC type of action.
i want to do it in boston soon. in front of a blood drive or in front of the Health and Human Services office (federal office in boston). is anyone interested? there are two of us ready to do it.
we would not "threaten" to donate our blood. so no bad press. we say to reporters and folks going into the blood banks, "don't you want to be protected from people like me, with cfs, who may have a retrovirus? well, right now, you are not being protected from us beause there is no ban on us donating, just a "discouraged from donating" warning.
i want to do the demonstration in my pajamas AND BUNNY SLIPPERS, with pillows and blankets and a cot. and a sign that reads: "Health and Human Services is withholding the publication of the FDA/NIH XMRV study about a newly discovered retrovirus that may be contaminating the blood supply and infecting millions of people." and of course have a one pager flyer to give to each person who walks by.
i have already reached out to the media here, and am trying to get their interest.
xxoo
rrrr