Advocacy- Thinking Outside the Box

[beesknees]

Have you seen the story that was all over the news about the piano in the water. Just Google "Piano Biscayne Bay', in four days it's gets more hits than XMRV!! Anyway, people speculated that it was from a music video or a divorce. Some teens finally came forward and admitted it was them. My first thought was why didn't we think of that? Look how much attention we could have received. We could have carved XMRV on the piano and added to the mystery of what that meant.
So this got me thinking share your oddball and crazy idea's to raise awareness and money for ME/CFS. Don't worry on details like how to accomplish your idea, or even if it can be accomplished. Were just brainstorming. So lets get the ball rolling. There are no bad ideas here.



Truman Show- My idea find a CFS person to broadcast their life 24/7 online. Granted it might be kinda boring. Maybe for every hour a person stays in bed people donate money. (Little do people know we can this for months/years.


My Fav.- Rework the lyrics to YMCA to use XMRV and make a music video of the song.

 

[Marty]

We could have carved XMRV on the piano and added to the mystery of what that meant.

Fabulous idea, beesknees; what a missed opportunity!

 

[justinreilly]

My first thought was why didn't we think of that? Look how much attention we could have received. We could have carved XMRV on the piano and added to the mystery of what that meant.
So this got me thinking share your oddball and crazy idea's to raise awareness and money for ME/CFS. Don't worry on details like how to accomplish your idea, or even if it can be accomplished. Were just brainstorming. So lets get the ball rolling. There are no bad ideas here.



Truman Show- My idea find a CFS person to broadcast their life 24/7 online. Granted it might be kinda boring. Maybe for every hour a person stays in bed people donate money. (Little do people know we can this for months/years.


My Fav.- Rework the lyrics to YMCA to use XMRV and make a music video of the song.

I think these sort of theatrical, funny, cool ideas are exactly what we need. I used to volunteer for the Sierra Club. Their activist handbook recommends doing some kind of stunt like dressing up in an animal costume. this is the sort of thing local (and increasingly national) tv news loves to cover. AIDS activists used drama, including in front of NIH with fake blood. this got dr. fauci to pay attention to them.

I like the piano idea; can we drop it on Dr. Fauci's head?

 

[justinreilly]

FWIW here's a sample idea of a tv/internet news friendly stunt-
I think having someone dress up in a "virus costume" and wait in line at the major blood bank in Atlanta or DC would be good- an AIDS-like retrovirus XMRV getting into your blood and FDA isn't doing anything to stop it.
Maybe have the retrovirus sit in on a CFSAC meeting (although they probably wouldn't let him in- more than they're doing to stop the real virus we can say to the media).
i don't think there are many pret-a-porter virus costumes so some crafty souls would have to make one.

we don't have a lot of people who are well enough to show up to a protest, so something (like this) that only takes a few people but gets attention would be great, imo.

 

[Marty]

Justinreilly
I like the piano idea; can we drop it on Dr. Fauci's head?

hee hee hee hee hee

something...that only takes a few people but gets attention would be great

Yes, that's exactly what we've been discussing, easier and more efficient advocacy than letter-writing campaigns. Let's show them how nutty we really can be. Can we match a piano on a sand bar? Boy, that was a super idea, with XMRV carved into it, and instantly the whole country knows about it.

Keep thinking. Use those sleepless nights.

 

[Cort]

That is an interesting idea......find a way to create a media event.......something so unusual and quirky they feel compelled to cover it....they love mysteries...that's something to build on....how about having things appear in cities across the US in prominent places--invisible illness figures...they keep showing up and no one can figure out whats going on....

(finally the mystery figure runs across the field during half time in the Super Bowl )

 

[Marty]

Definitely yes to the Super Bowl.

How about leaving your copy of "Chronic Fatigue Syndrome: a Novel" in a public place or a doctor's office magazine rack? Also your "Osler's Web", if you could part with it, would do more good out in public than on your shelf. Heck, clean out your shelves and leave all your ME/CFS books in various places. We are ME/CFS patients; we only need one book. (Can't remember the contents so we can just keep reading the same book.)

 

[beesknees]

FWIW here's a sample idea of a tv/internet news friendly stunt-
I think having someone dress up in a "virus costume" and wait in line at the major blood bank in Atlanta or DC would be good- an AIDS-like retrovirus XMRV getting into your blood and FDA isn't doing anything to stop it.
Maybe have the retrovirus sit in on a CFSAC meeting (although they probably wouldn't let him in- more than they're doing to stop the real virus we can say to the media).
i don't think there are many pret-a-porter virus costumes so some crafty souls would have to make one.

we don't have a lot of people who are well enough to show up to a protest, so something (like this) that only takes a few people but gets attention would be great, imo.

I LOVE this idea! In addition, maybe we could get a mouse costume. Mail the costumes around and find volunteers in different areas of the country to wear it and hand out flyers about XMRV. I like your idea of taking it to meetings also.

 

[beesknees]

How about this idea for public attention. We could try to get in the Guiness Book of Records. I believe you can suggest a record. I could imagine that would be a story local media would cover. I can't quite think of a record to go for. Maybe fitting the most people in a bed(but that doesn't seem like it could be too many people) Anyway, if we did something like in a public area, I can just imagine the onlookers watching all these people trying to fit on a bed in a shopping mall or something. If I was walking on a street and saw a bunch of people sitting on a bed, that would make me stop and look.

 

[justinreilly]

How about this idea for public attention. We could try to get in the Guiness Book of Records. I believe you can suggest a record. I could imagine that would be a story local media would cover. I can't quite think of a record to go for. Maybe fitting the most people in a bed(but that doesn't seem like it could be too many people) Anyway, if we did something like in a public area, I can just imagine the onlookers watching all these people trying to fit on a bed in a shopping mall or something. If I was walking on a street and saw a bunch of people sitting on a bed, that would make me stop and look.

the record for having the lowest Karnofsky score of any disease is the only record i think we have the energy to set!

 

[justinreilly]

That is an interesting idea......find a way to create a media event.......something so unusual and quirky they feel compelled to cover it....they love mysteries...that's something to build on....how about having things appear in cities across the US in prominent places--invisible illness figures...they keep showing up and no one can figure out whats going on....

(finally the mystery figure runs across the field during half time in the Super Bowl )

I think this is a GREAT idea!! Cort or anyone want to flesh this out anymore?

 

[cigana]

a symbol of the "revolution"?

I once thought about a symbol. Off the top of my head something like:



that catches the eye and is easy to, dare I say, graffitti?

The anti-nuclear campaign had their symbol which became well known. With so many people in each country with MECFS, if we can communicate, we should be able to get this image everywhere. Posters, flyers, graffitti etc. We should encourage all MECFS blogs and websites to dispay it. Obviously there'd also be a more professional version for that purpose!

Mark

p.s. I really like the virus/mouse idea standing in line at blood donation centres

EDIT: Please feel free to download and use this picture however you want!

 

[lucy]

Information is best spread through facebook and youtube. We would need a dramatic/funny youtube video which could be spread through facebook (like forward this to all your friends or you will get CFS?). People are totally scared of sexually transmitted diseases, so the youtube vid could for example include the most popular guy from youtube (the dramatic chipmunk) who turns around, looks into the eye, and letters appear: "CFS is sexually transmitted. Test for CFS now!", finishing with the text "4 million are infected already" - the trick would be the viewer will lookup cfs, realize it is not possible to test (as for example they can test for HIV). Related real videos would help with the basic information and situation overview. It would be an art/social/media experiment, to see how media channels can be harnessed to spread info through a 'dramatic/funny' vid.
We could see, how fast the studies for XMRV contamination came up, somebody will want to calm people down that CFS is not transmittable, so we could get our media coverage too.
Or other extremely radical means would be to converge to a city/country where CFS patients are not banned to give blood and hundreds/thousands of patients would give blood to the blood bank. Media publicity would be world-wide no doubt about it, although we might get more sleeping problems (than we have now) due to our conscience about the possibility to infect others. There was a study about human behavior in case of epidemics in the world of warcraft. There were several types of behavior observed, one of them being to go out, get into contact with as many other players as possible, as the more infected, the better chance of finding a cure. Because only the infected ones are highly motivated to search for a cure.
I know it is quite an evil proposal, but I wonder how many would agree that this could be an idea. Even only news about such event being organized (so not needing to go full lengths) would rise panic.
One is clear - begging others to be human and understand that this is a real illness, which can affect anyone, does not work.

 

[cigana]

Hi Lucy,

I really like both of your ideas. I must confess I have had the same thought on the idea of sending large numbers of PWC's to the bloodbank, but thought it too "taboo" to discuss here, so I'm glad you brought it up. Here in the UK we are not actually banned because of the retroviral asssociation (officially), so we could donate. Of course I had a huge ethical battle with myself over this idea. Then I realised, if 3.6-10% of the healthy population are infected, really the difference between a few PWC's donating and not is neither here nor there. More of us donating won't change a thing - the bllod stock is already infected.

The question is how many feel well enough to do this?

 

[muffin]

Great ideas! Think out of the box!

The MCWPA is looking for great ideas to use. But, everyone should be thinking, doing, and pushing on their own and as part of the MCWPA and other groups.

We need to do anything and everything to get attention. So great thread and great ideas!!

 

[Otis]

I once thought about a symbol. Off the top of my head something like:

View attachment 4891

that catches the eye and is easy to, dare I say, graffitti?

The anti-nuclear campaign had their symbol which became well known. With so many people in each country with MECFS, if we can communicate, we should be able to get this image everywhere. Posters, flyers, graffitti etc. We should encourage all MECFS blogs and websites to dispay it. Obviously there'd also be a more professional version for that purpose!

Mark

p.s. I really like the virus/mouse idea standing in line at blood donation centres

I really like the idea of a symbol, the movement could really use one. The question is do we want an XMRV-specific item or maybe something more generic to the illness.

Perhaps we could have a "contest" to see how many people would wear or display the symbol as many places as possible. We could note the location and perhaps get it on a map. I think we could set up a Picassa album for t
hat.

Also, perhaps the image of a person receiving an infectious transfusion would be powerful. To get the attention of the general pubic I think we need to find a way to capture the (reasonable) fear that they or their families could get XMRV via a transfusion.

 

[Nielk]

This is a great direction to go and follow through.

I have to tell you that i was laughing out loud while reading the posts on this thread.
I haven't done that in a long time and it feels very cleansing.
Thanks to all of you!

I will also think of an innovative idea.
(hopefully i can come up with one)

 

[boomer3]

How about changing a flag in a prominent place to xmrv flag. People say what is that? who changed that? It would have to be a persoanal flag or else you might run into problems with the bylaws.

 

[SpecialK82]

I like alot of these ideas, I have been thinking about a youtube video that would go viral - something like skydivers forming the letters XMRV in the air, and I love the idea of not saying anything else, let people get interested in the mystery and figure it out themselves

How about hiring a plane to drag an XMRV banner over a crowded site, like the Superbowl

 

[beesknees]

Love all the ideas! I'm also thinking maybe we need to use products to start raising awareness.

-Those silicone bracelets are hugely popular. There are company's that will custom create your message. We could have XMRV bracelets and Me/CFS bracelets.
-On the website http://photo.stamps.com/Store/business/. You can use any image and put it on a regulation postage stamp. This would be a very easy way to spread awareness. We all use stamps anyway. All we need is someone to create an image. Maybe we could use the CFS ribbon and write CFS Awareness under it.
-Going a little old school but Cookbooks. We can donate our recipes. I've never done this but churches and schools have done this to raise money.
-Calendar. Since it might be expensive to have a photographer/ studio etc. There are alot of the talented photographers on here and thus could donate a photograph.