I think we need a website dedicated to these photos of our faces and/or our signs. And the website should include the email addresses of all the key people we need to lobby, like HHS Director Sebelius.
i know this won't get far with anyone probably, but ... i just want to warn again to be careful about insinuations that the general population is at risk for gettin what we have. i know, i know - scaring them is probably the only way to get anywhere, but i just dont' want to be treated like a leper when this whole thing hits. what the media will do with it will probably be bad enough, i just think we ought to be careful. so the "you at risk?" sign doesn't sit well with me. just my opinion. last night i had a horrible nightmare that i was told i could not use a public restroom because i had AIDS. i know i am having these thoughts due to my fears of how i will be treated regarding XMRV. so again, i'm just gonna say this every time even tho i know it's not the most popular opinion - i think we should be careful about threats to the general public. thanks.
no i did not think that was your intent, but that is how it will come across - i don't mean threat as i'm "i'm threatening" - i almost didn't use the word i knew it was going to be misunderstood - i mean that they are "at risk" like you said, they will certainly see that as a threat. not from us, just a threat to their safety. please dont' get stuck on the semantics, i am just saying we need to be careful about scaring them.
i'm not sure i'm explaining well, but trust me RRRR i have been around here long enough to know you are certainly not the kind of person to threaten anyone. you are kind, i see that. i just worry that activists forget some things sometimes because they are so driven & am asking you & everyone to consider that scaring the uninformed may backfire on us. puttin the information out there is good, but i would stay away from the "you better do something or you might get it" kind of statements.
Realistically, I think the popular press will do a much more effective job of scaring people than anything we could do. I think "scaring people" is going to be a given, unfortunately.
As awful as it will be to confront the fear and ignorance that will inevitably arise, I think I certain level of "Eek!" in the general public can actually be a productive thing. People will be more demanding of answers and action if they get the message that this disease (1) is REAL and (2) could strike at anyone.
yes, back to my original post. the media will do a good enough job, i dont' think we need to add to it - & i knew the opinion would be unpopular. just askin that ya'll please consider those of us out there that dont' want the public to be frightened & realize you may be hurting us in a way.
I figure in a demonstration people would bring all different kinds of signs. With a million people sick there are going to be many points of view. If anyone comes up with a great slogan I bet other people will adopt it.
Silence = living death is pretty powerful. I like the lines around it.
We need some chants too.
Clinical Trials Now!
How about YOU: Ask for Research! (referring to sign)
of course KDP you are right. i tend to be a very thin skinned individual, perhaps too thin skinned to be on any open forum. i only ask that folks think about stuff that might do us more harm than good.
i certainly hope i did not offend you RRRR i love most of your ideas, the roses i love. you are clearly a nice person. i just had this one little suggestion to make.
i understand, serenity. but in terms of telling folks they are at risk, i just don't see it as doing anything but telling them the darn truth. they ARE at risk. a number of people have gotten cfs after a blood transfusion. so, wouldn't you rather be informed of the risks, even scared about xmrv, than ignorant about it, and then get it?
guess i'm not worry about what they need frankly, i'm worryin about my own skin. scaring people does me more harm than good. that is how i feel, so i'm off to the bench again. seems every time i say anything around here it's ignored.
We should have a discussion on another thread about the blood bank issues. It's already in the media since the blood banks have been discussing it. I just don't want to derail the march or other actions. There's room for many signs here.
I think the youtube videos were the first virtual protest.
Serenity i'm with you on this one. I too don't want us to be seen along side AIDS which i think will be unavoidable in the press, as they will want to create as big as headline as possible.
Those of us here who have children with me/cfs will understand. Unfortunately our 2 ill children have to be educated at home and are out of the school system, but it's our 2 healthy children i worry about who obviously do attend normal school. It's going to frighten people into thinking their children can catch something from them, as they all know they have a brother and sister with me/cfs. How the hell are we going to deal with that side of things, i know i'm not the only family on here who may end up with this problem.
I would prefer it to be kept as low key as possible in the papers.
An example of some fabulous new research that has been on the uk news this morning which hasn't made a huge fuss up until now is the new mri scan to detect autism in adults within 15mins, which they think will be available within weeks to everyone. I couldn't help wondering whether this could help us, especially with the talk of autism & xmrv.