Advocacy- Thinking Outside the Box

[beesknees]

Two ideas I think we should start doing right NOW!!:

1) We should start using Cigana's symbol. (I love to see it on shirts, and stickers)
2) Use Youtube to get the word out. It's free and free is good.


A video idea that I believe would make a big impact. I thought someone could go up to people on the street and ask them " Have you heard a new human retrovirus was discovered? or Have you heard of XMRV a retrovirus that may be in the blood supply? Record people's reactions to these questions. Post on youtube. I bet their reactions would be quite interesting!!

 

[WillowJ]

I really like the invisible person figures. That would involve some expense and expertise, so it would take some coordination, but it's attainable.

are you all familiar with the Exit Project: http://peggymunson.blogspot.com/

Anywhere there's a local group, I think we should figure out something to do right outside our local news stations. Make sure it's a station tied to a big network (pretty sure you reach 60 Minutes, Nightline, whatever, through the local affilliates, not so much directly).

Or at our local courthouses. That's a traditional place for solving difficulties. The State (or Province) government seats would also be a good option, but that might be a bit remote for some of us.

 

[justinreilly]

A fleshing out of an idea i brought up before:

I think, for cost-effectivenss, it would be good to try to contact/ rally up people local to DC to get out there who normally wouldn't (they would have much lower travel costs in terms of money and PEM). Maybe contacting a DC support group. Hillenbrand (sp?) lives there. if we could ever convince her to protest it would be a media coup of all time for us (i can dream).

We could get people to contribute cash for stipends for local people to encourage them to get out and protest or wear protest t-shirts at the meeting- $20 or $30 or whatever works, given to each local participant. I would contribute $200 if someone who will be, or ideally is, in DC could organize this (i'm not the ideal person since i'm not near DC and can't travel to DC- though i will organize the preparation if someone who will be there can do the on-site stuff and they don't want to/ can't do the prep). I've never contributed money to an ME cause, but i think we can really get a big bang for our buck with this. If local people don't respond to this then we can reassess after the meeting. If they do, it will really help us, imo.

 

[justinreilly]

Two ideas I think we should start doing right NOW!!:

1) We should start using Cigana's symbol. (I love to see it on shirts, and stickers)
2) Use Youtube to get the word out. It's free and free is good.


A video idea that I believe would make a big impact. I thought someone could go up to people on the street and ask them " Have you heard a new human retrovirus was discovered? or Have you heard of XMRV a retrovirus that may be in the blood supply? Record people's reactions to these questions. Post on youtube. I bet their reactions would be quite interesting!!

good ideas!

 

[caledonia]

I agree with BeesKnees.

1. I love love love Cigana's XMRV symbol.

2. Any media stunt, sit-in or whatever we do should be videoed and put on YouTube. Even if the original event didn't get media attention, if the video went viral, that could end up on the national news. Also an accumulation of say, thousands of XMRV videos on YouTube could make an impact.

3. I also love the idea of interviewing the "man on the street" asking what they know about XMRV, and making that into a video. edited to add - We should ask people in line at the blood bank what they know about XMRV.

 

[alex3619]

Hi, I think a grass roots media campaign is a good idea. Every now and then some clip will go viral, and if that happens only once it will impact upon hundreds of thousands of people for minimal cost. If enough of these clips are posted on the net, it might also get coverage in mainstream media.

While reading this page another idea occurred to me. Basically cartoon people on a T-shirt, poster or online image - in the foreground are real people , behind them people who are shadowy with sickly green Xs on them, and behind them are people in full shadow, with blood red Xs on them: the caption below is "Who will be next to disappear?". Feel free to use this idea if you like it.

Unfortunately I am housebound and don't own a video camera, or I would be interested in making videos. It is making me think about buying an el cheapo videocam, but I would rarely have the opportunity to use it.

Bye
Alex

 

[cigana]

new logo

Please feel free to use my new logo wherever you like (attached).

Cheers,

Mark

 

[beesknees]

I really like the invisible person figures. That would involve some expense and expertise, so it would take some coordination, but it's attainable.

are you all familiar with the Exit Project: http://peggymunson.blogspot.com/

Anywhere there's a local group, I think we should figure out something to do right outside our local news stations. Make sure it's a station tied to a big network (pretty sure you reach 60 Minutes, Nightline, whatever, through the local affilliates, not so much directly).

Or at our local courthouses. That's a traditional place for solving difficulties. The State (or Province) government seats would also be a good option, but that might be a bit remote for some of us.

Don't laugh. I had this idea for a way to represent our invisible disease and grab attention at the same time. Spandex bodysuit's. They are available in white which would be a great way to represent the invisible disease. I think if a few people were to wear a spandex bodysuit at a protest or whatever it would be attention grabbing. You can see the suits here. http://http://www.superfansuits.com/

Here's an idea that would only require one or two volunteers. A few people could wear the suit and just hand out papers with nothing on them except Cigana's XMRV symbol. Maybe on the back put a date, time and place. This could somehow lead up to a bigger event where our message gets out.

 

[WillowJ]

these are all very good ideas

Justin, what meeting? The NIH ME/CFS workshop or is there something else? I do like the idea of having DC-area people show up and it would be nice if we gave them something because these are probably the same people who have been going to CFSAC meetings all these years.

I would love to be and have been involved... but... I've had the Disease a long time but known what it was only for a relatively short time, and live on the other side of the country. Basically in a Dark Zone as far as knowledge and availability of ME physicians goes, except that it isn't terribly far to Arizona.

Yes, it would be really cool if Laura Hillenbrand showed up at an event but my understanding is that she is not able/barely able to leave her house. I don't think it's fair to ask this of her. Of course, it's also my understanding that she has no medical treatment at all and no ME-competent physician (but she would first have to get to one, before they could treat her, and this could be an insurmountable obstacle).

 

[justinreilly]

I agree with BeesKnees.

1. I love love love Cigana's XMRV symbol.

2. Any media stunt, sit-in or whatever we do should be videoed and put on YouTube. Even if the original event didn't get media attention, if the video went viral, that could end up on the national news. Also an accumulation of say, thousands of XMRV videos on YouTube could make an impact.

3. I also love the idea of interviewing the "man on the street" asking what they know about XMRV, and making that into a video. edited to add - We should ask people in line at the blood bank what they know about XMRV.

1. I like the new xmrv symbol too- looks like the bat signal or something. I will stay with cigana's old one though. i think it looks like some kind of cool lord of the flies type thing that would be carved onto a piano!

2. Great idea: definitely record any protest for youtube. i like rivka's one person protest outside HHS on youtube.

3. This is an awesome idea. We should totally do this!! interview people on line at the blood bank about xmrv. you'd probably get visceral reactions great for youtube, rather than just the shrug you'd get on the street!

 

[justinreilly]

Don't laugh. I had this idea for a way to represent our invisible disease and grab attention at the same time. Spandex bodysuit's. They are available in white which would be a great way to represent the invisible disease. I think if a few people were to wear a spandex bodysuit at a protest or whatever it would be attention grabbing. You can see the suits here. http://http://www.superfansuits.com/

Here's an idea that would only require one or two volunteers. A few people could wear the suit and just hand out papers with nothing on them except Cigana's XMRV symbol. Maybe on the back put a date, time and place. This could somehow lead up to a bigger event where our message gets out.

These are great! I esp like the camo one which could also symbolize invisibility.
The copy on the website: Our Green Camouflage Spandex Suit says "What's up? I'm ready to go however this night goes down." Most likely the only way it will go is awesome though. : )

 

[justinreilly]

these are all very good ideas

Justin, what meeting? The NIH ME/CFS workshop or is there something else? I do like the idea of having DC-area people show up and it would be nice if we gave them something because these are probably the same people who have been going to CFSAC meetings all these years.

I would love to be and have been involved... but... I've had the Disease a long time but known what it was only for a relatively short time, and live on the other side of the country. Basically in a Dark Zone as far as knowledge and availability of ME physicians goes, except that it isn't terribly far to Arizona.

Yes, it would be really cool if Laura Hillenbrand showed up at an event but my understanding is that she is not able/barely able to leave her house. I don't think it's fair to ask this of her. Of course, it's also my understanding that she has no medical treatment at all and no ME-competent physician (but she would first have to get to one, before they could treat her, and this could be an insurmountable obstacle).

Sorry, yes I meant the CFSAC meeting. NIH probably isn't quite as convenient for journalists, though bethesda is on the metro i think.

She doesn't have medical care, wow!

 

[frenchtulip]

I absolutely LOVE Cigana's symbol! And Justin's "SILENCE = A LIVING DEATH!" is really great, too. I might add below the symbol (if it's not too much text)

The third human retrovirus
Now linked to ME/CFS and prostate and breast cancers!

(People understand that cancers are serious.)

 

[cigana]

This is from another thread but I'm including it here too:

One idea I had was to hound individuals. There are probably too few of us connected at the moment to do effective street demos. But if a small number of us can target one powerful individual and hassle the hell out of them, that could be very effective. I think the best way to do this would be to follow that individual home from their place of work. Then campaign on their home doorstep. I realise there will be legal problems, but there must also be ways around these. I'm sure the law allows for some protesting. All we'd have to do is inform the individual in question what our demands are and that we would stop if those demands were met.

For example, in the UK we could target the head on the MRC and demand that he removes psychiatrists from the CFS board. If this guy is hassled every day he might just think why the hell not!

 

[justinreilly]

This is from another thread but I'm including it here too:

One idea I had was to hound individuals. There are probably too few of us connected at the moment to do effective street demos. But if a small number of us can target one powerful individual and hassle the hell out of them, that could be very effective. I think the best way to do this would be to follow that individual home from their place of work. Then campaign on their home doorstep. I realise there will be legal problems, but there must also be ways around these. I'm sure the law allows for some protesting. All we'd have to do is inform the individual in question what our demands are and that we would stop if those demands were met.

For example, in the UK we could target the head on the MRC and demand that he removes psychiatrists from the CFS board. If this guy is hassled every day he might just think why the hell not!

In the US you can't harrass someone. they can get a restraining order.

i've seen people protesting at someone's house in the UK on tv. i haven't heard of that in the US. maybe the laws are different.

bothering people is ok in my (non legal) opinion considering the stakes. There's a scene in cabin boy where he is hitting a marauding giant on his toe with a stick. 'i'm giving him foot pain.' everyone's little annoyance of the powers that be counts!

 

[beesknees]

I saw this on the news last week. This would be perfect to do to represent our invisibleness. I wonder if we wrote him and asked if he could do this for us.

http://http://www.hoax-slayer.com/invisible-man.shtml