Demonstration at the CDC

[jimbob]

I tentively set the date for May 3rd, but that's not set in stone. Purpose goals: 3 decades of horrible neglect-funding for actual research-a retrovirus that could threaten the nations blood supply and the safety of the american public, just to name a few. I'm contacting as many me/cfs orgs as I can this week.

 

[RivkaRivka]

demonstrating at their satelite offices, too, is great -- because then they'd report to their headquarters what is happening. and it makes it seem like we are EVERYWHERE.

also, it allows folks in other states to go demonstrate. even if it is only 2 people with a sign. (case in point, when i did my small demo/skit at the Boston Red Cross office, it is clear they told their national headquarters about it.)

(http://www.youtube.com/watch?v=1DSzTCYPAvs
-- 5 min comedic video pressuring the Red Cross to ban CFS blood donations -- the resulting campaign was a real success! the success came from many different groups all working on the Red Cross, not just my video.)

 

[SOC]

Any advocacy that does not target a complete reversal of CDC policy may be well-intentioned but is a very sad waste of time.

What a coincidence! I think an angry demonstration targeting only the CDC and antagonizing the first person there willing to even talk with us is "a very sad waste of time".

Good thing there's plenty of work to go around.

I haven't stopped thinking about advocacy, but I have unquestionably stopped thinking about participating or encouraging my family to participate in this demonstration.

 

[Nielk]

What a coincidence! I think an angry demonstration targeting only the CDC and antagonizing the first person there willing to even talk with us is "a very sad waste of time".

Good thing there's plenty of work to go around.

I haven't stopped thinking about advocacy, but I have unquestionably stopped thinking about participating or encouraging my family to participate in this demonstration.

Why do you keep mentioning "angry" and "violent" demonstrations when no one is talking about that?????????????
We have the freedom in this country to demonstrate for our rights. This does not mean violence.
We can just have a sit in and have placards and give out informative flyers. How is that a bad thing that you have to shield your family from?

By keeping mentioning this, you are maybe stopping other people to make an effort to show up at these demonstrations
and lessen our success rate.

I think, RivkaRivka that it's a great idea if people around the country can assemble on the same day at all the satellite CDC sites.

Thank you Jimbob for your work in trying to organize this important event.

By showing up at these events and getting attention from the media can only help our cause.
We are talking about educating the public about our plight.

SickofCFS: The way you talk about telling your family members not to participate as if this will involve a terrorist attack?

We are just exercising our civil rights by PEACEFUL demonstration and available information to educate everyone.

Why would you boycott such an effort is beyond me.
Normally, it wouldn't bother me what others on the forum have to say because everyone has a right to their opinion but, it seems like you have an agenda to discourage people to attend these demonstrations for no "reasons based on reality".

Now is the time that we need unity and support from everyone.
These unwarranted comments are not helping us.

Would you prefer that we abandon the whole idea of demonstrating?
This is our intrinsic right as US citizens. How else will we ever be heard?

 

[Hope123]

Demonstrations do not have to be angry/ violent to get attention; there have been many instances of successful demonstrations throughout US and world history that did not involve anger. It depends on how the demo is organized, who the leaders are, and what the message will be.

It's everyone's individual choice what they want to be involved in or how they want to act but the types of issues that come up with ME/CFS make even normally mild-mannered laidback people passionate. In world history, there are many examples of leaders who are quiet, mild-mannered types but were compelled to action by the injustices they witnessed or experienced.

Will it take your insurance company denying any further tests or treatments until CBT/GET is tried for people to act? Will it take Social Security denying benefits if you don't try CBT/GET for people to act? Because, you know, the CDC says that CBT/GET is the standard of care. Don't even try saying it didn't work for you: you didn't try hard enough then! Think this is a fairy tale? Ask our UK/ European friends. I also speak as someone who has seen how health insurance companies behave from the inside.

 

[SOC]

Why do you keep mentioning "angry" and "violent" demonstrations when no one is talking about that?????????????
We have the freedom in this country to demonstrate for our rights. This does not mean violence.
We can just have a sit in and have placards and give out informative flyers. How is that a bad thing that you have to shield your family from?

By keeping mentioning this, you are maybe stopping other people to make an effort to show up at these demonstrations
and lessen our success rate.

I think, RivkaRivka that it's a great idea if people around the country can assemble on the same day at all the satellite CDC sites.

Thank you Jimbob for your work in trying to organize this important event.

By showing up at these events and getting attention from the media can only help our cause.
We are talking about educating the public about our plight.

SickofCFS: The way you talk about telling your family members not to participate as if this will involve a terrorist attack?

We are just exercising our civil rights by PEACEFUL demonstration and available information to educate everyone.

Why would you boycott such an effort is beyond me.
Normally, it wouldn't bother me what others on the forum have to say because everyone has a right to their opinion but, it seems like you have an agenda to discourage people to attend these demonstrations for no "reasons based on reality".

Now is the time that we need unity and support from everyone.
These unwarranted comments are not helping us.

Would you prefer that we abandon the whole idea of demonstrating?
This is our intrinsic right as US citizens. How else will we ever be heard?

I never once used the word "violent". Where did YOU get it from?

I think your post here is very unfair. You read a lot into what I wrote and then attributed it to me. I resent the picture you are painting of me. It is a creation of your own mind, not a representation of me.

Why are you questioning my choice not to attend a particular event? Surely it's well within my rights to NOT attend any event I choose.

I have said in every post here that everyone should make their own choice and take part in the activities that suit them best. Did I ever suggest you should not demonstrate? Where are you getting this stuff?

Your post is full of lies and innuendo, and frankly, I resent it intensely.

I doubt your post is encouraging people to support this demonstration. Why don't you get off my back and spend your energy on doing something positive to support the event?

Contrary to your innuendo, I encourage people who want to be part of this demonstration to attend.

 

[justinreilly]

Everyone should do as they feel is right. There are many different ways to address the same problem; all have their advantages and disadvantages.

I choose not to be a part of a hostile demonstration. That doesn't mean I will insist others operate according to my rules. I expect the same courtesy from people with different opinions/temperaments.

I don't particularly like being compared to a Nazi collaborator. I hate the CDC's history with ME/CFS, but the Nazi's operated on an entirely different scale of evil. As bad as our situation is, equating what we suffer to what happened in WW2 suggests a serious lack of 1) understanding of that period of history, and 2) respect for its victims.

I will not ask my family to participate in a hostile or hateful or otherwise ugly demonstration. Maybe it will be an advantageous way to operate, but I will leave it up to those who support that method to be there and carry it off. I'm saving my energy for a path the suits my abilities and temperament. There's plenty of work to be done for all of us to find a place.

Sorry, Willow.

PS: Neilk and Justin: With CNN HQ in Atlanta, you should be able to get some news coverage. That would be really exciting. Looking forward to seeing you on CNN *grin*

I agree that everyone should just do what they feel is appropriate and right. We are just starting out, so i understand why people would be trepidacious about getting into something over their head; we all worry about that every day! maybe it could be 'staged' over time where people who are very frail and can't stand up or endure stimulation arrive at the beginning and stay for however long they can even if just an hour. Some more healthy people could be there to make sure they are comfortable and not hassled. Then later in the day people who have more energy and can stand up for some period and chant a little bit and talk to media can go. then later people who want to be more vocal and confrontational.

i don't want anyone to have PEM just thinking about throwing moltov cocktails and getting hosed with water cannons!

I really want both the people who want a quiet protest or people who are mad as hell and not going to take it anymore to go; they are all very valuable to all of us.

I didn't mean to say anyone was a 'collaborator'. I don't think that. i think that appeasement is a noble impulse. who wants to go to war unnecessarily especially when you've already been to hell and back- i'm talking both about 1930s Britain and us. We're both far from cowards; we've just seen so much destruction we are looking for a more peaceful means. What i am saying is that as much as i admire that mindset and think it is understandable, I think that it will not succeed without more. The more is shaking things up.

Neilk has experience with how the nazis operated and it seems to me she said there were some similarities. I'm not the only one who thinks that there is a lot of evil at the heart of what has been done to us. And you have to stand up to evil; it's not going to do the right thing just because you tell them you're hurting.

 

[Freewindblowin]

I think a "presence" or demonstration is a great idea! I also am too ill, too far away, and too broke. I would be happy to make a donation toward defraying the inevitable incidental expenses (Re-hydration drinks, signs, handouts, permitting, etc.) of fundamental First Amendment support for any ME/CFIDS representative attendees, while PANDORA meets with Unger.

RivkaRivka, I am going to go watch your video. Cool!

I see no basis for "virtual" social position jockeying/co-opting/"chilling the forum dynamics", flaming, or whatever it is referred to as, Member Nielk. I will go ahead, however, and call it out as behaving as a "Forum Bully" - insofar as my own comfort level goes.

I will check back to see if the demonstration plans materialize further. I will certainly consider supporting an advocacy plan for this proposed date.

Thank you,

L.

 

[justinreilly]

We are targeting CDC policy. I suspect the other cities might be OSHA offices, but in any case, I'd guess they have nothing to do with policy.

Jimbob, where are you? We need date and purpose goals. We need you.

The one in Fort Collins is some kind of pathogens lab. they worked on lyme and rocky mountain fever there.

could be a good idea to do protest at different cdc outposts also. Assuming i am healthy enough, I can do this in fort collins then. Kelvin Lord is living in ft. collins now. I don't know if he wants to get involved in advocacy, but i have pm'd him to check out this thread.

 

[justinreilly]

also, it allows folks in other states to go demonstrate. even if it is only 2 people with a sign. (case in point, when i did my small demo/skit at the Boston Red Cross office, it is clear they told their national headquarters about it.)

(http://www.youtube.com/watch?v=1DSzTCYPAvs
-- 5 min comedic video pressuring the Red Cross to ban CFS blood donations -- the resulting campaign was a real success! the success came from many different groups all working on the Red Cross, not just my video.)

Awesome! One person can make a difference!!

 

[justinreilly]

What a coincidence! I think an angry demonstration targeting only the CDC and antagonizing the first person there willing to even talk with us is "a very sad waste of time".

Good thing there's plenty of work to go around.

I haven't stopped thinking about advocacy, but I have unquestionably stopped thinking about participating or encouraging my family to participate in this demonstration.

I personally think Marty is 'coming from a very good place' as they say here in Boulder. He, like many others, has suffered tremendously for decades and poured energy into advocacy 20 years ago. It is hard for him and everyone to see not much has changed. i think he is just trying to convey his experience.

this and any protest we do is not 'owned' by anyone. if you want to be non-confrontational, please come too, we need as many voices and people there as we can. and maybe divide it up by time like i suggested before so that you can protest with like-minded souls.

 

[justinreilly]

I tentively set the date for May 3rd, but that's not set in stone. Purpose goals: 3 decades of horrible neglect-funding for actual research-a retrovirus that could threaten the nations blood supply and the safety of the american public, just to name a few. I'm contacting as many me/cfs orgs as I can this week.

I think we were originally thinking of March to coincide with the Unger/ patient rep meeting? If it's in May now, that's good in the sense that the weather will be a lot nicer- great for both protesters and media! If it's going to be in May anyway, do you want to do it on one or more of the CFSAC days? there are people planning a protest at HHS then on mecfsforums.org. You could coordinate with them. i think it might be good to coordinate our protest with an event like CFSAC to make CFSAC people feel the heat and have the media take note of the meeting. There are three days of meetings so ideally i think we could have protests or presences inside and outside the meeting all three days.

And let's not forget doing something attention getting like dressing up in the white or camo full body suits to symbolize the invisible disease. the media cameras will love that especially if they are sitting in on the meeting in the front row.

also food and bevs for media

 

[justinreilly]

I think we could use some advice from AIDS activists about what to do and what worked for them. Does anyone have any connection to any former AIDS activists who are all bored and yearning for the good old days of taking on the 'man'.

I would urge everyone in the coming months or how ever long it takes for us to get this ball really rolling to pull in every favor you are owed and if you have long since done that like i have, then put aside some of your ego and ask, solicit or beg any connections we have to contribute money and time to protest efforts like this, any effective advocacy org or group that may spring up to help us or if you don't want to ask for that, then to WPI. Find old hippy and AIDS activists and college radicals who are itching for the ultimate just cause.

Try to rekindle communication with any past friends and acquaintences who may ultimately be able to help us in some way- potential donors of money and time, doctors, scientists, politicians, lawyers, journalists or other influential people or people. If you don't know lawyers and doctors, then just regular folks who can be your friends and support.

This is hard for me and i bet everyone, but i am trying to get back in touch with people. i am going to wait a while till there is a real friendship again before i ask anyone to do anything; but we may be in this for the long haul so i think it helps to lay a foundation.

 

[SOC]

I agree that everyone should just do what they feel is appropriate and right. We are just starting out, so i understand why people would be trepidacious about getting into something over their head; we all worry about that every day! maybe it could be 'staged' over time where people who are very frail and can't stand up or endure stimulation arrive at the beginning and stay for however long they can even if just an hour. Some more healthy people could be there to make sure they are comfortable and not hassled. Then later in the day people who have more energy and can stand up for some period and chant a little bit and talk to media can go. then later people who want to be more vocal and confrontational.

That's a good idea, Justin! It would allow participation from some of our more fragile cohorts and still get the message across.

i don't want anyone to have PEM just thinking about throwing moltov cocktails and getting hosed with water cannons!

I really want both the people who want a quiet protest or people who are mad as hell and not going to take it anymore to go; they are all very valuable to all of us.

That's my point. There's room for all of our styles in this journey. And they're all valuable.

I didn't mean to say anyone was a 'collaborator'. I don't think that. i think that appeasement is a noble impulse. who wants to go to war unnecessarily especially when you've already been to hell and back- i'm talking both about 1930s Britain and us. We're both far from cowards; we've just seen so much destruction we are looking for a more peaceful means. What i am saying is that as much as i admire that mindset and think it is understandable, I think that it will not succeed without more. The more is shaking things up.

I agree that some "shaking up" is needed for our ultimate success. Doing it in this place and at this time is simply not MY thing. Doesn't mean it isn't someone else's. Doesn't mean it isn't important. It's just not MY choice. I don't see why that is such a big deal. There's plenty of work to go around.

Neilk has experience with how the nazis operated and it seems to me she said there were some similarities. I'm not the only one who thinks that there is a lot of evil at the heart of what has been done to us. And you have to stand up to evil; it's not going to do the right thing just because you tell them you're hurting.

Most of the western world has some close contact with the damage the Nazis did; their evil was on a massive scale. There were thousands upon thousands of Nazis who believed they had the right to exterminate large portions of the population and take over control of the world.

Our situation is bad, but it isn't that. There are a limited number of truly evil people working against us, and many,many ignorant, stupid, thoughtless, uncaring, selfish, and self-righteous people. We need to open the eyes of those people, shake them up, get them to see and understand. Accusing them of evil equivalent to that of the Nazis is not going to accomplish that, IMO. We want those currently ignorant, stupid, thoughtless, and uncaring people to wake up and get on our side against the few truly evil ones.

I sincerely hope you have a successful demonstration. I would love to see it on CNN! Finally, some real people with ME/CFS shown in the media, what a message that could be.

Best of luck to you.

 

[Nielk]

I'm usually a very polite, sensitive quiet women but it has not gotten me far in life being this way. I'm a child of Holocaust survivors. Lost many members of my family to the Nazi killing machine and I have nightmares about my ancestors just marching sheepishly to their death.

Of course, I don't mean to compare the CDC or our government to the Nazi's but in a very subtle way they are allowing us to rot stretching out a hand to help us.

I never meant to say that anyone was acting like a nazi and am sorry if anyone got offended (especially sickofcfs)

I am just so frustrated by the lack of action from the CDC, NIH or our government to even recognize us as real ill
people.
The reference to Nazi's was just to point out that being silent doesn't get you anywhere. By no means do I advocate any type of violence ever.
Had the people of Germany demonstrated against the Nazi regime in the beginning when Hitler came to power, maybe
our whole history would have taken a turn. It's because he was able to convince the masses about his tactics that he was able to invoke so much power.
If (hopefully I'll be able to)I will attend one of the demonstrations, I will be peaceful.
I encourage others to attend if they can because the more people they see there, the more of an impact it will have.

I'm sorry sickofcfs if I was harsh on you. I'm sorry. I definitely did not mean to hurt your feelings.

Nielk

 

[WillowTree]

I don't know how these things work, but I have an idea. What about issuing a press release on the day of the demonstrations similar to the one the MCWPA did when their ad appeared in The Washington Post. We would have more control over the content assuring that the media would not just skim over things, but present our story with more accurate and in-depth information written from out point of view. I have no idea how to go about doing this or if costs are involved. Any thoughts?

 

[justinreilly]

I don't know how these things work, but I have an idea. What about issuing a press release on the day of the demonstrations similar to the one the MCWPA did when their ad appeared in The Washington Post. We would have more control over the content assuring that the media would not just skim over things, but present our story with more accurate and in-depth information written from out point of view. I have no idea how to go about doing this or if costs are involved. Any thoughts?

sounds like a really good idea. maybe we can contact mcwpa. media is their specialty.

 

[carolinetanderson]

I'm sorry that I don't agree with a demonstration at the CDC. They 1) know EXACTLY what the ME/CFS community wants and have ignored it for decades. They KNOW. They DON'T CARE. 2) They are bureaucrats, which means they can't be fired. So all the protesting in the world will only make them dig their heels in deeper. Decision makers, who have something at stake are the ONLY people who can make a difference. I hate to say it but that generally means Congress or one of Obama's cabinet. The CFIDS Association should be on Capitol Hill every day meeting with Congressional staffers. As far as I can see they don't do too much of anything. So I'm suggesting targeting several members of Congress and possibly the Health and Human Services Secretary. I am suggesting that we target a letter writing campaign. Not email. Having thousands of letters dumped into the office makes a bigger impression than emails, which can be filtered into a fill and ignored. I'm proposing the letter writing campaign contain two pieces of paper or one piece with two elements. One page should be a bullet pointed, visual, fact sheet, with a demand for specific action, say better funding. The second page should be a person story of how the illness has affected your life. Who you were before and who you are now. The question is: who to target in Congress. I am open to suggestions. Generally a subcommittee chairman or a major committee chairman should be considered.

 

[WillowTree]

I'm sorry that I don't agree with a demonstration at the CDC. They 1) know EXACTLY what the ME/CFS community wants and have ignored it for decades. They KNOW. They DON'T CARE. 2) They are bureaucrats, which means they can't be fired. So all the protesting in the world will only make them dig their heels in deeper. Decision makers, who have something at stake are the ONLY people who can make a difference. I hate to say it but that generally means Congress or one of Obama's cabinet. The CFIDS Association should be on Capitol Hill every day meeting with Congressional staffers. As far as I can see they don't do too much of anything. So I'm suggesting targeting several members of Congress and possibly the Health and Human Services Secretary. I am suggesting that we target a letter writing campaign. Not email. Having thousands of letters dumped into the office makes a bigger impression than emails, which can be filtered into a fill and ignored. I'm proposing the letter writing campaign contain two pieces of paper or one piece with two elements. One page should be a bullet pointed, visual, fact sheet, with a demand for specific action, say better funding. The second page should be a person story of how the illness has affected your life. Who you were before and who you are now. The question is: who to target in Congress. I am open to suggestions. Generally a subcommittee chairman or a major committee chairman should be considered.

We have also done this for years. I personally have written many letters to the powers that be in the Obama Administration, including Secretary Sebelius and the Assisant Secretary of Health Howard Koh, members of Congress, Directors in the NIH, Directors in the CDC. We have given both written and oral presentations of our lives before and after ME/CFS to the CFS Advisory Committee that reports directly to the Assisant Secretary of Health and Secretary Sebelius. Look up the CFS Advisory Committee's website and read the public testimony archived there. The stories of the ME/CFS patients are truly heartbreaking. Some have given up doing this as it has gotten them nowhere and they have only ended up harming their precarious health situations further. I don't know what the solution is, but so far this has not produced results. The only thing that I know of that has gotten their attention was the "Time for Action" campaign conducted before last October's CFS Advisory Committee meeting. For two weeks before the meeting, patients emailed, phoned, and faxed in every day with the question: "What are you doing for ME/CFS today? Patients and their families are waiting." This brought about results. Even Dr. Wanda Jones announced at that meeting that certain things would not be happening at this meeting had it not been for the "Time for Action" campaign. We need more action like this to truly get their attention. Otherwise we have the very distinct possibility of being ignored for many more years to come.

 

[Roy S]

demonstrating at their satelite offices, too, is great -- because then they'd report to their headquarters what is happening. and it makes it seem like we are EVERYWHERE.

But RivkaRivka, we are everywhere!

(We just need to get our **it together)

I think the right timing is before the meeting with our representatives.