Demonstration at the CDC

[Grape Funk]

Just to throw in my views on this - feel free to disagree.
I was part of the XMRV protest outside the department of health in November 2010 (London UK) - to highlight the blood donation ban. We had around 50 protesters handing out leaflets etc and holding banners up. We got zero press coverage on the day and a couple of local TV stations did a 1 minute or so individual interview. They were not allowed to mention XMRV.
The only way to make them stand up and listen is to cause as many problems as possible. The media will come if this happens. We were WAY to polite and happy to stand around being nice. We should have put beds and wheelchairs across the road , stopped the traffic on which is a main road in London - stopped being so damn nice about this. It wouldn't have taken long for the Police to arrive, followed by the press. How would it have looked if the police were seen dragging off people in wheelchairs etc etc - the press would have loved it!

I have to aggree with my man clive here. Does anybody know anything about MLK Jr and the 250,000 people that came out for civil rights in Washington? How about Nelson Mandela and his fight, even After his incarceration expired? Are we looking at ACT UP, from the AIDS patients and their oppression? These are key to building our own history. Finding aspects of previous history, taking the good and the bad, and building our own formation. If people do not think we are that oppressed, i would seriously consider reevaluation of our history the people who have suffered years longer than you have without any sort of treatment. 25 plus years has been far too long to comply with an organization such as the CDC. Everyone of us is on our way to life imprisonment, with a charge of murder, supplied by these so called "Health institutions". People it is time to stick up for yourself, get together, come together, and represent what you stand for. I'd take a week of PEM for supporting my troops of people for a day. Can you imagine 500-1000 of us standing in front of the NIH and the CDC on the same day with all the same T-shirts on? T-shirts saying "Wanna know Truth - Read Osler's Web"( I've already thought of a lot worse than that as well) And on top of that delivering a hand written letter from fellow PWC from different countries that could not make it, or are indefinitely bed bound (great idea Eric), and placing them at the main entrance to the CDC and NIH? If i was a employee there, i know i would be curious to pick up a letter. I know i would let people sleep at my place, and my mom would be out there supporting us, as i'm sure familial members of your tree would too. Along with doctors, friends, and peaceful people supporting good natured people as ourselves.

It's time to be stark, and cause commotion. MLK Jr. and crew decided to proceed with the "I HAVE A DREAM" speech as we all know it today, even after JFK and administration decided to sign the bill. You know WHY? He, all his people, and white brothers around the country wanted to make a point that they were not the "communistic army" some white people and media pronounced them to be. This took years of demonstrations in the south along with people being martyrs before the speech was even able to be proposed.

Stop letting so called "higher ups" deter you from what is rightfully yours. The only way we will achieve this is if we stand for what we believe is right,in unity, and let millions of other know we are validated and need good, biological, scientific work done. Because, most people don't know what CFIDS is(we need a F#$%&% new name too). And i'll tell you, i didn't even know i had CFIDS until i was a year and a half deep with it, flourishing over my head, for what now i know to be more than, sadly, just a disease i have to cope with. So how do we expect others to learn about us, when they only hear the media, if they even hear that psychotic noise!?!
The media will come, the people will catch on, but first we must be united as one entity. I'll leave you with a quote

"I believe that unarmed truth and unconditional love will have the final word in reality. That is why right, temporarily defeated, is stronger than evil triumphant."
Martin Luther King Jr.

 

[justinreilly]

Very powerful, Grape Funk! thank you.

 

[Grape Funk]

welcome thanks for replying justin

 

[slayadragon]

We should have put beds and wheelchairs across the road , stopped the traffic on which is a main road in London - stopped being so damn nice about this. It wouldn't have taken long for the Police to arrive, followed by the press. How would it have looked if the police were seen dragging off people in wheelchairs etc etc - the press would have loved it!

This is really excellent, I think. More movement in this direction and we might actually get somewhere.

We should look at the ADA in 1990, where people crawled up steps of restaurants to protest the lack of wheelchair ramps.

 

[jimbob]

I chose xmrv only for 2 reasons; 1. for me, at my age, I'm putting all my eggs in one basket, that xmrv is my only hope. 2. We can use regular people to demonstrate, MCWPA might be able to round up some bigger groups to help.

 

[Hope123]

I think it would be interesting for some snappy T-shirts/ pins to be printed up and worn by demonstrators, attendents at CFSAC, etc. -- e.g.

"Ask me about my life sentence. XX Years served." or "Sentenced for life. XX years served." -- with the number of years served as time the person has been ill

"Ask me about M.E." -- with myalgic encephalitis in smaller letters

{Anyone, feel free to take/ modify my idea. No credit needed.}

 

[Grape Funk]

Anyone know what the dates our for CFSAC, and where it is? Also is there anything big coming up at NIH?

One more, is there a Thread here on what CFS/CFIDS/ME name should be changed to, or opinions of people's choices at least? If so can someone point me in the direction? thanks

 

[jimbob]

We will only confuse the puplic with me/cfs/cfids etc., and they don't really care because they're not sick. Throw an HIV retrovirus at them, which they might even be carrying, and you will get their full attention! Meant HIV like. You can still shame the crap out of the CDC with: CDC cover-up puts americam public in harms way-Ask the CDC if it's safe to give or receive blood?-What is the CDC doing to protect the public and the 20 million already infected-3 to 4 million already gravely ill, will you be next? etc. etc. I would like to see this happen on May 3rd and have 100s in attendance. Like I said earlier, this allows us to use non me/cfs people, which could boost the numbers dramatically! Almost forgot one, CDC testing their own people, why not you? Also simple but scary pamphlet to hand out. We need everyone to contact the CAA to help publicise this event and make it as big as possible. Jim

 

[cfidsurfer]

Great ideas, BTW, I would like to see a demonstration annually. Maybe cirtain local groups could rent buses to get to demostration locations which would be easier than everyone driving cars, therfore more people would participate.

 

[jimbob]

With any luck, this might be the only one!

 

[Hope123]

We need everyone to contact the CAA to help publicise this event and make it as big as possible. Jim

The CAA won't issue a strong press release re: PACE much less help us with a demonstration. I support the CAA's research efforts but am reducing my donations to them because I and several people have been informed they are not interested in media response, patient advocacy, etc. I have also found the CAA to not be interested in grassroots-level stuff as of late.

 

[jimbob]

Then we give them an ultimatum, help support us or we start class action suit due to negligence! I'm finally and totally fed up with all the bull####!

 

[Hope123]

Anyone know what the dates our for CFSAC, and where it is? Also is there anything big coming up at NIH?

One more, is there a Thread here on what CFS/CFIDS/ME name should be changed to, or opinions of people's choices at least? If so can someone point me in the direction? thanks

There's a big State of the Knowledge meeting at NIH 4/7 and 4/8 (April).

CFSAC occurs twice a year, around mid-May and late Oct-Nov. Exact dates unknown until close to time. http://www.hhs.gov/advcomcfs/

 

[jimbob]

Lost it a little bit there, but seriously, they need to start carrying their weight!

 

[*GG*]

I think it would be interesting for some snappy T-shirts/ pins to be printed up and worn by demonstrators, attendents at CFSAC, etc. -- e.g.

"Ask me about my life sentence. XX Years served." or "Sentenced for life. XX years served." -- with the number of years served as time the person has been ill

"Ask me about M.E." -- with myalgic encephalitis in smaller letters

{Anyone, feel free to take/ modify my idea. No credit needed.}

I like these ideas!

GG

 

[RivkaRivka]

I chose xmrv only for 2 reasons; 1. for me, at my age, I'm putting all my eggs in one basket, that xmrv is my only hope. 2. We can use regular people to demonstrate, MCWPA might be able to round up some bigger groups to help.

i know what you mean, jimbob. i feel all my eggs are in that xmrv basket, too. but when we met with the NIH with Dr. Peterson back in september, peterson made a great point to the NIH bigwigs. he said, if xmrv does not pan out, we don't want you to abandon us again. (not that they have yet embraced us, either!) my sense was that peterson is not convinced that xmrv is "it".

 

[RivkaRivka]

We will only confuse the puplic with me/cfs/cfids etc., and they don't really care because they're not sick. Throw an HIV retrovirus at them, which they might even be carrying, and you will get their full attention! Meant HIV like. You can still shame the crap out of the CDC with: CDC cover-up puts americam public in harms way-Ask the CDC if it's safe to give or receive blood?-What is the CDC doing to protect the public and the 20 million already infected-3 to 4 million already gravely ill, will you be next? etc. etc. I would like to see this happen on May 3rd and have 100s in attendance. Like I said earlier, this allows us to use non me/cfs people, which could boost the numbers dramatically! Almost forgot one, CDC testing their own people, why not you? Also simple but scary pamphlet to hand out. We need everyone to contact the CAA to help publicise this event and make it as big as possible. Jim

jim, how do you proposed getting non me/cfs people to join the protest?

 

[jimbob]

Still working on that one, hoping MCwpa will come up with some ideas.

 

[taniaaust1]

The is somewhat ingenious, something like a monstrous demonstration after 1 week of the commencement (saturday to following sat). Almost looking like it has attracted people, rather than being planned (though is really is). Problem - will pwc be able to sustain the hardship on their bodies?

I actually thought this idea would be easier on people.. as many of us cant plan to show up somewhere on a certain day. It allows people to work around the illness. (I didnt mean for the same people to go many days straight but rather working around our illness so we can demonstrate on our better days when able). When just one day is planned.. the odds are that many may just be too sick that day or will push real hard to make it that day and hence make one much iller.

 

[taniaaust1]

The CAA won't issue a strong press release re: PACE much less help us with a demonstration. I support the CAA's research efforts but am reducing my donations to them because I and several people have been informed they are not interested in media response, patient advocacy, etc. I have also found the CAA to not be interested in grassroots-level stuff as of late.

wow.. i see them as bad but that sounds really terrible as I thought that kind of thing should be the role of a big patient org such as CAA.