Demonstration at the CDC

[Hope123]

I'd donate money too for someone to represent me (us) at such a demo whether as pay for a person or for food/ drinks/ transport. I'm all for going through formal channels but believe a variety of techniques might be needed.

One thought would be for the protest to invovle those who can't travel -- if someone has a Wi-Fi connection and a computer and is able to hook up to people remotely who have a computer and camera, a virtual protester could be present.

Also, see the 2009 Academy-winning documentary -- 'The Cove' -- about the killing/ abuse of dolphins. Whether you agree with it or not, that one scene at the end where Flipper's original trainer walks into the packed international meeting wearing a video monitor on his chest showing the dolphins dying -- is one powerful statement. The new cameras and media people gathered there followed him as he walked around.

 

[SpecialK82]

Justin - I quite agree that "preparing for trial while discussing a settlement" is the right approach. I guess my concern is that the "tone" of the demonstration should hinge on her action. The fact that she has agreed to a discussion with patient organizations is HUGE. And this was achieved through pressure and a well-reasoned, logically constructed letter.

I just want our response after the meeting to match hers. In other words, if she truly reaches out and shows a commitment and a willingness to change how business is conducted (per the 9 point letter) then lets praise her for doing the right thing for once, while also insisting on a timetable, and then closely monitoring actions.

My concern is this - if she only receives flack from our community and it doesn't matter if she does right or wrong, then we will be mentally dismissed - we will be people that cannot be satisfied.

We all are outraged over our treatment by this government - but how can we engage them to do the right thing? At the end of the day, we need them and their deep pockets. I would like to see intelligent discussion with government agencies continue, I want us as a community to show them that we can be reasonable, and understand their budget constraints, etc. but that our issues are of equal importance and that we want to all roll up our collective sleeves and figure out how to make this work.

And pressure is good, very very good - we just need to make sure that it is pushing the CDC in the right direction - into helping us and not dismissing us again. I guess the question is - where is that line? I do not know....

 

[WillowTree]

I agree, SpecialK82, that the tone of the demonstration is very important. At this point, we don't know what her response or reaction to the nine points, or her approach to us will be. This is, more or less, her first impression of us, and first impressions are important. I see no harm in a peaceful, polite appearance at the doors of the CDC (with news media onsite, of course) to let her know that we, en masse, support the nine points and the need for a new beginning on her part and that of the CDC. I think we can let her know that we want a new beginning and look forward to working with her, and that we are serious and determined. We need to let her know that we are more than just the same few patients Reeves claimed to be sending complaining emails over and over again about the CDC's program -- that the discontents were very few and in the minority. Also, Dr. Unger has been more or less in her laboratory. She needs to hear our stories and put them to the faces of the people who desperately need her help. I think it can be a very good thing to emphasize that we are there for new beginning. We can present with the feeling and atmosphere that this is a new day, both for her and for us. And then we will see where it goes from there.

 

[SOC]

This is currently very tentative:

I have relatives in Atlanta with a connection (besides me and my daughter) to ME/CFS. I might be able to make it down there for the demo and to organize some people from the area.

While I'm sorting out whether this will even work for us, I can maintain of list of people who want to be represented. Not sure I could pull off theatricals, but perhaps photos and stories.

I'm not making any promises at this time, but if you want to get on my tentative list of people to be represented, post here.

 

[SOC]

I think we will gain the most support from a simple informational demonstration in the day(s) preceding the meeting.

My thinking, and I admit upfront that I am not confrontational, is that a lot of people handing out fliers with photos and stories of ME/CFS patients to everyone who goes into, out of, or past the CDC building, would bring the true face of ME/CFS to Dr Unger and others at the CDC. Let them see who we really are before we take up arms. Maybe, just maybe, we can open some eyes.

I know we're angry and I know we mean business. I'm just thinking that the time for an aggressive demonstration is after Dr Unger has met with PANDORA representatives and rejected their proposals.

Is this too passive for this group?

 

[SpecialK82]

WillowTree and Sickofcfs - Yes, yes and yes! You both have said it better than I have. Educate Dr. Unger and others about who we really are - people that are gravely ill, that are respectfully and firmly asking for action now. I love the idea of passing out fliers with stories and pictures - let's show the human side.

As Willowtree said - present with a new beginning, a coming together - a truce. This meeting will be influenced greatly by our attitude - if we are asking for on-going discussions with patient groups/doctors then we have to show that we are equal to the task - that we can be logical, reasonable and cooperative.

 

[WillowTree]

This is currently very tentative:

I have relatives in Atlanta with a connection (besides me and my daughter) to ME/CFS. I might be able to make it down there for the demo and to organize some people from the area.

While I'm sorting out whether this will even work for us, I can maintain of list of people who want to be represented. Not sure I could pull off theatricals, but perhaps photos and stories.

I'm not making any promises at this time, but if you want to get on my tentative list of people to be represented, post here.

Sickofcfs, I would like to be added to your list to be respresented. Of course, I realize this is tentative at this point and that with the unpredictabilty of ME/CFS, plans many times have to change. I appreciate you generous offer. Let's hope it works out and that we will be present there at the doors of the CDC, either in person or by proxy. Blessings.

 

[justinreilly]

I agree, SpecialK82, that the tone of the demonstration is very important. At this point, we don't know what her response or reaction to the nine points, or her approach to us will be. This is, more or less, her first impression of us, and first impressions are important. I see no harm in a peaceful, polite appearance at the doors of the CDC (with news media onsite, of course) to let her know that we, en masse, support the nine points and the need for a new beginning on her part and that of the CDC. I think we can let her know that we want a new beginning and look forward to working with her, and that we are serious and determined. We need to let her know that we are more than just the same few patients Reeves claimed to be sending complaining emails over and over again about the CDC's program -- that the discontents were very few and in the minority. Also, Dr. Unger has been more or less in her laboratory. She needs to hear our stories and put them to the faces of the people who desperately need her help. I think it can be a very good thing to emphasize that we are there for new beginning. We can present with the feeling and atmosphere that this is a new day, both for her and for us. And then we will see where it goes from there.

I don't agree with that type of what i view as 'appeasing the nazis' approach. CDC has had a very consistent 25 yr track record of persecuting us and she has said she doesn't intend to change anything and intends to keep the Reeves criteria. she is not as brazen as reeves in publically insulting pwME, but i just see that as CDC's being more politically saavy with throwing us crumbs to mollify us while changing nothing. as mindy said, we are not crumbs and we won't accept crumbs.

We have presented our stories tens of thousands of times to cdc including at every CFSAC meeting- at one of which she spoke. she worked at the CFS program and was acting chief and now chief of cfs program. she knows exactly how bad our situation, disease and mistreatment have been.

i feel that everyone should express and do what they think is right and maybe if you are going to the protest you hold up signs and talk to media about what you think and others do the same about what they think either together or in two separate groups.

 

[Nielk]

I don't agree with that type of what i view as 'appeasing the nazis' approach. CDC has had a very consistent 25 yr track record of persecuting us and she has said she doesn't intend to change anything and intends to keep the Reeves criteria. she is not as brazen as reeves in publically insulting pwME, but i just see that as CDC's being more politically saavy with throwing us crumbs to mollify us while changing nothing. as mindy said, we are not crumbs and we won't accept crumbs.
We have presented our stories tens of thousands of times to cdc including at every CFSAC meeting- at one of which she spoke. she worked at the CFS program and was acting chief and now chief of cfs program. she knows exactly how bad our situation, disease and mistreatment have been.

i feel that everyone should express and do what they think is right and maybe if you are going to the protest you hold up signs and talk to media about what you think and others do the same about what they think either together or in two separate groups.

I agree with you Justinreilly, making nice has not worked for us for the past 30 years.
They just keep looking at us as pathetic ants they can crush and no one will even come and sweep up the dirt because NO ONO CARES!!!!!

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 away in front of their eyes without stretching out a hand to help us.

I think that because we have been in the past so passive- either willingly but most likely because of our illness -we are just paralyzed to take any action, When we do, it should be powerful.

What, we are worried that the CDC will be insulted??? I think that the attack from two fronts at the same time is perfect.
Marly Silverman from PANDORA going to talk to them. (and why do we think that it's such a victory for her just to get an appointment representing 1,000,0000 people who are sick??) While there is a demonstration going on in front of the building showing them how crucial the issue is.

Do we have to bow down and kiss Unger's toes that she "allowed" a conversation from Silverman??

By the way, is this demonstration arranged by someone? Do we have a permit for it?
Do we have a date yet?

 

[Marty]

Justin, Nielke

everything you said.

[Unger] has said she doesn't intend to change anything and intends to keep the Reeves criteria

I also am very uncomfortable with confrontation, but we have been through all the rational routes for over 20 years and look where we are - the CDC is publishing in journals and on their website that we are psych cases. Look around you in the world - political will (power, money) does not yield to discussion. This is not an information campaign; it is war. Believe Unger.

 

[alex3619]

Speak softly and carry a big stick; you will go far. Theodore Roosevelt

Hi, the debate is polarizing into the talk is good/action is better dichotomy.

There is a middle road. Theodore Roosevelt: Speak softly and carry a big stick; you will go far.

In my opinion we need both approaches, with the big stick lurking in plain sight, and the speaking softly offered as an olive branch.

Bye
Alex

 

[WillowTree]

Hi, the debate is polarizing into the talk is good/action is better dichotomy.

There is a middle road. Theodore Roosevelt: Speak softly and carry a big stick; you will go far.

In my opinion we need both approaches, with the big stick lurking in plain sight, and the speaking softly offered as an olive branch.

Bye
Alex

By no means in my original post did I mean that all we do is sweet talk. What I had in mind was exactly what Alex3619 said. I am hoping that we can get our message out on two fronts. If we can get media coverage, then we have a means of getting our message out to the greater public. To my knowledge, something like this has never happened before. We need to make the public aware by whatever visual means possible that we are truly sick and that ME/CFS does not equal "being tired"! On the second front I want to let Dr. Unger and the CDC know that we are well aware of what is going on, what the stakes are, that we stand behind the points being presented, and that we mean business. I think there is value in presenting some of our stories and pictures on posters, etc. via the media to the general public who are very unaware of our pathetic situations. We can also have flyers/placards with our demands which are necessary for change to occur to better the lives of millions. There can be flyers/placards with statistical information about the poor government response as far as funding, etc. goes. These are just some suggestions. But I do think that at this first demonstration, this should be done with less anger and confrontational mood and more of today we have a chance for a new beginning which will lead to improving the lives of millions of suffering people both in our country and across the globe. Depending on how things go and the outcome of the meeting, there will be time for more anger and confrontation later. What I am thinking about is that if we do get media coverage, and I certainly hope we will, this will be our country's first impression of us. Let's present reasonable, seriously ill people who are greatly in need of an adequate and effective response from its government.

 

[SOC]

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*

 

[WillowTree]

I understand perfectly, SickofCFS. I do not want to be part of a hostile demonstration either. But one can be strong, determined, and forthright without being hostile. Let's each continue to work for our cause to the best of our abilty as we see fit. As you say, there is plenty of work for all of us to do. Let's hope for the very best outcome from this meeting with Dr. Unger.

 

[SOC]

I understand perfectly, SickofCFS. I do not want to be part of a hostile demonstration either. Let's each continue to work for our cause to the best of our abilty as we see fit. As you say, there is plenty of work for all of us to do. Let's hope for the very best outcome from this meeting with Dr. Unger.

Thanks for your understanding WillowTree.

 

[Marty]

Please don't stop thinking about this, sickofcfs, Willow Tree, and others. I lost my life because of the CDC. It is they who intentionally belittled us with the CFS moniker and psychobabble policy in 1988. That policy is even stronger today with their journal articles and website.

The CDC is the mouthpiece recognized by the world; they must be our singular target. When the website gets rewritten, we will have everything we need in the way of information and the validation for funding.

But patients keep taking on other peoples' work! Think about it: We don't want to write information packages, we don't want to meet with CDC, we don't want to go to CFSAC meetings, we don't even want to fund WPI. Our singular goal is to get the government to do their job, which is all of those things. Any advocacy that does not target a complete reversal of CDC policy may be well-intentioned but is a very sad waste of time. I hope people will think hard about that and let our 20 years of experience teach us.

 

[RivkaRivka]

i am waaaaay too sick to do much of anything nowadays, but when is this demo planned for? a date, i mean. i'm more able to take on something after march.

 

[Marty]

I was about to PM you, Rivka, hoping you would take the lead. We definitely do need a target date and target purpose, and soon.

 

[RivkaRivka]

jimbo was the one who posted the first post on this thread, so i think he is wanting to take the lead. besides, i'm soo sick right now (2 wks of the flu and still counting). and i'm busy til end of march.

but i think that we should have demos at ALL (or as many of) the CDC offices we can around the U.S.A. all on the same day, if possible. if not, then that is okay. so when i was thinking of my I REPRESENT project, i was thinking of trying to find arts/theater groups in each of these CDC cities.

There are 9 cities with CDC offices. You can see the cities on their website below.


Cincinnati, Ohio
Durham, North Carolina
Fort Collins, Colorado
Hyattsville, Maryland
Morgantown, West Virginia
Pittsburgh, Pennsylvania
Puerto Rico
Spokane, Washington
Washington, DC


---- Forwarded Message -----
From: CDC-INFO <CDCINFO@cdc.gov>
To: xxxx
Cc:
Sent: Monday, February 7, 2011 5:56 PM
Subject: RE: inquiry

Thank you for your inquiry to CDC-INFO. We are sorry for the delay in responding to your email. A recent high volume of inquiries has slowed our response time. In response to your request for information on the locations of CDC offices, we are pleased to provide you with the following information.

The majority of CDC employees work out of the Atlanta, Georgia, headquarters, however the agency has a major presence in nine other US cities and in numerous countries around the globe. Please visit the CDC website for a list of these cities:

http://www.cdc.gov/about/stateofcdc/html/budget-workforce.htm

For more information about CDC, please visit the CDC websites:

http://www.cdc.gov/about/

http://www.cdc.gov/

Thank you for contacting CDC-INFO Contact Center. Please do not hesitate to call 1-800-CDC-INFO, e-mail <mailto:cdcinfo@cdc.gov>cdcinfo@cdc.gov, or visit <http://www.cdc.gov/>www.cdc.gov if you have any additional questions.

CDC-INFO is a service of the Centers for Disease Control and Prevention (CDC) and the Agency for Toxic Substances and Disease Registry (ATSDR). This service is provided by Vangent, Inc. under contract to CDC and ATSDR.

 

[Marty]

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.