More Info Lyme Underground invites everyone in the Lyme community and all support groups to stand with us as we demand a complete revision of Lyme disease diagnostic and treatment guidelines. We will meet in the lawn between the Whitehouse and the Washington monument on the north side of the Ellipse in Washington DC at 11:30 AM on Saturday, May 21, 2011.
Bring sign, bring banners, bring your VOICE We have been encouraged to remain silent for far too long. We must raise our voices to a level that can no longer be ignored. We must GET LOUD!!! STAY LOUD!!!!!
This demonstration of awareness is held in conjunction with other actions throughout the country and the world as a part of Lyme Disease Awareness month. Please, do what you can to make a difference.
This event will be needing volunteers and people to help coordinate.
For more information and to volunteer for the event call please contact [email protected]
-------------- Time to bring it! Let's show those mother____ers what "small but vocal" really looks like!
Posted by lou (Member # 81) on :
You might want to put some effort into publicity. The NIH protest in 1999 was covered by exactly no media. It was still worth doing because at least NIH management knew we were not happy. They snuck in Alan Steere, the guest speaker, and called up enough armed security guards to repel an invasion from a foreign country, instead of a small group of well behaved sick people. They didn't change their attitude toward lyme afterward however. But we can't give up.
Protests in DC, even with large numbers do not get covered always. If you have a million people, maybe. I am wondering if it could be tied in to a meeting of some kind with an official. Who, is the question. And how to get this accomplished, is another question.
Even if that is not a possibility, make sure the officials know this is happening. Send to head of NIH, NIAID, head of Health and Human Services agency, key congress members. Even though CDC is headquartered in Atlanta, they are part of Health of Human Services, so send to head of CDC too. Make sure you say what you want to be changed. If you need permits for protest, be sure to apply in enough time.
Get as much mileage out of this effort as you can.
Best of luck.
[ 02-26-2011, 11:47 AM: Message edited by: lou ]
Posted by seibertneurolyme (Member # 6416) on :
Anyone know who is behind the organization -- Lyme Underground?
If you want this protest to actually be successful then I would advise contacting all the other lyme organizations and support groups. In the past there have been too many disagreements and divisons among organizations to be an effective voice for lyme patients.
I agree with Lou -- make sure to obtain any necessary permits.
Bea Seibert
Posted by lou (Member # 81) on :
Well, if you get all the opinions of all the lyme groups on this protest, you will have a lot of conflicting opinions, and nothing will get done and there will be a lot of hard feelings.
If you look at other groups who had to protest repeatedly to get fair treatment, like the AIDS patients, you will see that they did not always agree on strategy and there were those who worked in the system, people who took over the New York stock exchange, and everything in between.
In the conservation movement, there is a wide range of activity, from those who work with corporations to extract money for environmental projects, to monkey wrench gang types, and everything in between.
My feeling is that, provided it is well organized and not violent, a variety of actions is synergistic. The establishment will feel pressured by the protesters maybe, enough to work with those who want into the system and are not confrontational.
Just a thought. In other words, you may not get a consensus, but if it is well designed and planned, it could be useful. Especially if the IOM report is out by then and it is no help to us.
Posted by seibertneurolyme (Member # 6416) on :
Lou,
Maybe I didn't word that quite right. What I meant to say was that whoever the organizer is should invite all the other groups to participate. I think more people would likely get involved if they either knew who was behind the protest or if it was "endorsed" by some of the known lyme organizations.
I also agree that a speaker would be great -- it would probably increase attendance as well.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
Bring Halloween noisemakers if you're too tired to yell, etc!!
Hope this rally gets us somewhere!
Posted by onbam (Member # 23758) on :
Timothy Grey is heavily involved with this. Timothy's one of the people who's REALLY on our side.
[ 02-26-2011, 08:45 PM: Message edited by: onbam ]
Posted by Robin123 (Member # 9197) on :
I say go for it - make some noise - it's a crisis and people need to hear about it and get more educated -