Idea for Protests - Hire the Picketers

[caledonia]

We don't feel well enough to protest in person. Many unions and advocacy groups are hiring picketers to demonstrate for them. You can hire people at minimum wage through Craig's List. So why not us?

Here is the article in the Wall Street Journal.

http://online.wsj.com/article/NA_WSJ_PUB:SB10001424052748704288204575362763101099660.html

 

[Otis]

Good idea caledonia. That thought crossed my mind a while back - but it got lost - even though it's a very short trip.

 

[muffin]

Great idea

But we need to gin up money to pay them. We also need to think of the best place(s) for them to be and we need to get them placards with smart sound-bite like sayings on them. I vote that the first place is in front of the CDC. Have to find out the rules for protesting/picketing a government building or near a gov't building first. Easy though. It's the money to pay them and getting them the placards with good sound bites and website addresses that give the overview of the deadly XMRV and its risk in the blood supply/blood products, prostate cancer, etc).

We need that NIH study to get really valid data. That study better be released "as is" and without any CDC/NIH messing around with it to cover the CDC and other orgs.

 

[V99]

How about drama students?

 

[muffin]

Even better idea V99! I read the article on WSJ and they did say that some of these hired hands weren't really "into" their job. They were smoking, talking on cell phones, etc. and not doing such a great job. BUT, drama students could mimic the sick - it's not hard, lay down, sit down, use walkers/crutches/wheelchairs - everything that looks like the real thing - US being ourselves and terribly sick. Great idea using Drama students, spe. after we explain to them how a very sick CFIDS person acts/looks. I'm picture perfect for showing them what a CFIDS sick person looks/acts like. Black sunglasses, coke always in hand, meds/creams, braces for knnes/ankles, dark circles under my eyes, and that lovely yellow-white color on my face. Not hard!
Really have to think this one through some more. Drama students would work best. They would try to act the part. WE are just to darn sick to be out there for any time. Never mind trying to get up. bathed, dressed and drive to the location. Can't do it.

Keep up the great thinking!!!!!!!!!

 

[Tuha]

this is also a possibility - I think we really need to be visible and the best way is a demostration. I also think we are able to do it alone. a lot from us not but a lot from us would be able to make a small demonstration walk or to stay some days in tent in front of a goverment building. i red somewhere on this forum that in the nineties the cfs people made demonstrations. if they were able to do it before we can try to do it now. I think at least in big cities we would find some cfs people who would do it.

I can imagine like a big action that in each big city (or even small) in all over the world there would be a demonstration in the same day or the people would stay some days in tents - I think it would be the best publicity for us. even it would shock the healthy people who dont know anything about our sickness that really sick people have to demonstrate for their rights. and the best way how to have attention is to shock the people

I can tell you one good example. I live next to the parliament and I often go there for my night walk. for some days there is a young guy in tent and he demonstrates because he finds out that the representatives dont work too much so he would like to have less representatives in the parliament. If his request is real or not there are always a lot of people who discuss with him - there is almost every day TV and I also saw there a lot of representatives talking to him.........so this would be a huge publicity.

if we would be able organise something like this - i would join it in my city even alone - it would be no problem for me to stay some days in tent. it doesnt matter if i lie in tent or at home

 

[Tuha]

this is also a possibility - I think we really need to be visible and the best way is a demostration. I also think we are able to do it alone. a lot from us not but a lot from us would be able to make a small demonstration walk or to stay some days in tent in front of a goverment building. i red somewhere on this forum that in the nineties the cfs people made demonstrations. if they were able to do it before we can try to do it now. I think at least in big cities we would find some cfs people who would do it.

I can imagine like a big action that in each big city (or even small) in all over the world there would be a demonstration in the same day or the people would stay some days in tents - I think it would be the best publicity for us. even it would shock the healthy people who dont know anything about our sickness that really sick people have to demonstrate for their rights. and the best way how to have attention is to shock the people

I can tell you one good example. I live next to the parliament and I often go there for my night walk. for some days there is a young guy in tent and he demonstrates because he finds out that the representatives dont work too much so he would like to have less representatives in the parliament. If his request is real or not there are always a lot of people who discuss with him - there is almost every day TV and I also saw there a lot of representatives talking to him.........so this would be a huge publicity.

if we would be able organise something like this - i would join it in my city even alone - it would be no problem for me to stay some days in tent. it doesnt matter if i lie in tent or at home

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[muffin]

Wonder if we should pick one day or several days? This is going to require money, a great deal of planning/coordinating, legal forms for protesting/group activities, placards, etc. But it can be done.
We might start with just one place, like the CDC or the CDC and Parliament(s) in the UK/Canada. People are always protesting in front of the White House (across in the park - or they did when I lived there), and no one paid attention. We also ignored those protesting on the streets and even on the Mall near the Capitol in Washington since it was a common event and got some media attention but not a huge amount. I and my sister protested on the mall a couple of times and although there were a ton of people there, there was still very little media coverage. So, that means picking sites that are unusual - hence the CDC and since THEY are the ones who have done the most damage to CFIDS/Retroviruses/XMRV, THEY should be first on the list.

IF we take this further, we move to private messages and email and NOT this public forum for obvious reasons.

 

[beesknees]

Here's a crazy idea. There is a website where people list what they will do for 5 dollars. You can list what you would do or what you would pay someone 5 dollars to do. If we could get enough people on here to pay the 5 dollars we could pay people to protest at a pretty decent price.
We can even come up with other creative ideas. Here are a couple examples of things people will do that is listed on the site- I will send your press release to 1000 news media for 5 dollars, I will tweet my 58,000 followers any message you want, I will name my boat after you for 5 dollars.(I'm just imaging a boat named XMRV). The website is www.fiverr.com.

 

[Seattle Sue]

I'm currently reading the Randy Shults book, "And the Band Played On" about the politics of the AIDS epidemic. At the beginning, even though almost 300 people had died in one year, the FDA was still saying it was not a real illness on it's own. It was just the immune system being exhausted by multiple infections. Sound familiar?
I haven't gotten that far in the book yet, but a friend says that the only reason AIDS began to get taken seriously was because of the activist group "Act-up". She says they say down on the Golden Gate Bridge, among other things. LOL! We've got some floating bridges here in Seattle. Do you think that would do the same thing?
I'd love to be involved in some activist group. I wish one of us had the energy to lead it!!!!!

 

[eric_s]

I totally agree, Tuha. That was my idea, too. BIG demonstrations in every country (at least Europe and North America, edit: Australia and New Zealand too, of course), right in front of the government building, on the same day, same hour. Stay there until everybody knows. Come again and again, if necessary.

But the important thing, in my opinion, is, that this would have to be planned right. It would certainly take time to prepare for this, probably at least a year. All the advocacy organizations should be on board.
We would really have to get ALL OF US out there. Only if the public and politicians see how many we are, they will understand the gravity of this. The number is the most important thing, in my opinion.
Some won't be able to attend, but that's a small number, at least in Europe, where distances are not so big. No excuses!! Sorry, i know we usually don't like to hear that, because it's wrong, but i have CFS myself, so i'm allowed to say it ;-). And this would really matter.

We would bring our chairs and beds, so we can make it. People could see this and would be able to understand better. Family or friends could come with us, to help (they could wear a different color of clothes than us, so everybody knows who is who). Maybe even some of us would not tolerate the effort and have to be carried away by paramedics. But that would really show people the reality about our condition.

Everybody would be invited to come there, look at us, talk to us. Like a big zoo . Media would have to be contacted in advance, so it gets in the news. Drs. would have to be there too, to talk to the media and the public. Hospitals would have to be ready.
We would have to have a very clear and short enough message, who we are and what we want. We would have to prepare those arguments very well, in advance, and back them up with facts, as well as possible.

That's what i think we should do, if XMRV is not "it". And maybe even if it is, to raise funds.
On the other hand if XMRV is proven, then it will not just be PWCs, it will be everybody who's XMRV positive. So this will be a new situation and might change things. That's why i think we have to wait a little, until we know about XMRV and then decide what to do.



About hiring people. Sorry, this is not personal, but i think this would be wrong.
Because we should really come across as honest and serious. People have to see US, our FACES, our body language, how we barely can manage to sit straight and talk to them, in some cases.

 

[citybug]

I like the drama students idea. I wouldn't want them to lie. It could be a point that we can't do it and they are acting for us. They could be dramatic.
I'd like some people to be outside the xmrv workshop and cfsac by the government buildings. I'm in denial, but i'm too sick to go.