I heard about a story on NPR today about some people who went over to Sudan and got detained....a white guy on a tourist permit who was there at the detention camps photographing the genocide victims...then people are outraged!!! If hundreds of thousands of people in Africa are being killed...no biggie...but a couple of civilan white guys have problems then they pay attention...

So...what are we gonna do...I know some of you on here are as brash as I am and would be on the next plane to Africa were it not for another battle we are waging right here in the USA with lyme disease....

I am so f#$%king po'ed....too many people are being denied treatment and the ignorance is continuing...

We should stage something outrageous...like the runaway bride...look how much publicity that got and she does not even have a cause...maybe she has lyme...but I digress

Now that we are sick we have nothing to lose breaking the law and getting arrested for doing a sitin and refusing to move until the media shows up....I want NPR to do a story on US!!!!! I know people at NPR and I'm going to do something about this!!!

Is anyone well enough or insane enough or both to do something with me???

Non violent means of protest??
 

There is a place to start! Join CALDA. Walk in the race. Sponsor somebody in the race. Get somebody else to sponsor somebody in the race.

Phyllis even offered to push somebody in a wheel chair if they couldn't walk, though I don't know if the wheel chair spot has been taken.

I'm not capable of a 4 mile walk, but my sister was kind enough to offer in my place. AND to do a bunch of fund raising, as well.

There are several well organized efforts happening through CALDA, LDA, etc. I recommend everyone join as many of these organizations as they can, and then DO something.

Yes, it does make a difference. CALDA has been instrumental in getting several laws passed impacting Lyme patients, including the Lyme Awareness week that begins Saturday. If you didn't know about it, contact CALDA and find out how YOU can get the word out.

calda.intranets.com www.lymedisease.org www.lymetimes.org
Join our online discussion and support group at
California Lyme

------------------
Sonoma County Lyme Support
[email protected]

[This message has been edited by riversinger (edited 06 May 2005).]
 

I know things are slow, but I think the attitude that nothing is changing anyway, can be a really good excuse not to do anything.

If everybody cooperated, and did just a little bit, all together, a lot could get done. Not Pollyanna, just plain practical.

------------------
Sonoma County Lyme Support
[email protected]
 

You got me puzzled here, cave. Sarah is very knowledgeable, has been involved in some progressive, useful actions in the past, so I don't understand where you are coming from. Or was this a general comment?
 

Well, that wasn't hard at all, so I'm editing. Search is working at the moment and here is a post with info:
http://flash.lymenet.org/ubb/Forum3/HTML/009288.html

[This message has been edited by lou (edited 06 May 2005).]
 

I know i need to do something constructive, not just silly. I joined CALDA the other day and hope to get some leads on more stuff to do politically from that organization.

yeah, I am ticked off...but its energy to do something positive and make a difference. There are people more sick than I and that anger can be used constructively to help others. I'll go to the support group and see what they have to say about getting the word out about lyme.

I want to help and I do need direction to channel the energy that I have....too many people are too sick to do anything and have no one to fight for them...I am well enough to do some things. So thanks for the feedback and for not putting me in an "I love myself" jacket just yet..ha ha ha.

I have always been full of P and V so now that i'm full of lyme...well watch out! :-)

Thanks! I need to get involved politically locally and at the state level first....
 

------------------
Sonoma County Lyme Support
 

Don't think anything Sarah and other action groups are doing would fall into the hunger strike or protest type of thing. Guess I thought you CA folks were more in touch with each other.

Not that I am against protests. In the environmental movement it seems like you need groups and individuals who have more than one approach to the problem. And I certainly have carried a sign for Lyme!
 

Lisa

I'm forming a new internet discussion group. The topic is The Deliberate Fraud of the Steere Camp (and what we can do about it!)

The group is open to everyone except members of the Steere camp and their sympathisers, people who want to use the issue to promote hatred and violence against innocent people (eg the far-right extremists who have posted occasionally on these topics here), or those whose posts are disruptive, open the group to ridicule, or are disrespectful to other group-members.

Topics of discussion might include:

Steere camp's connections with the Insurance Industry

Lyme and its relation to Military and biowarfare interests

Pharmaceutical/biotech industry, vaccine manufacturers, test-kits, etc

Other industries with which Steere camp has conflicts of interest

Ways in which scientific data re Lyme has been distorted/spun/falsified/withheld to the detriment of patients

Ways in which the Steere camp suppress alternative scientific views (persecution of LLMDs and Lyme activists, manipulation of medical press, influence on mass media etc)

Strategies for exposing conflicts of interest/scientific fraud and defeating the Steere camp

Anyone interested, please email me at [email protected] In order to guard against infiltrators, you are asked to please provide two referees from the Lyme community. Thanks.

Lisa Masterson

 

Didn't that happen with HIV/AIDS in the beginning? How did the HIV/AIDS community get the attention of policy makers? AIDS is more graphic and always led to a horrible death in the early days, so that was part of the reason attention was paid to it....and the numbers of people dying grew alarmingly fast.

But when I think of all the little children afflicted with Lyme diesase, I get really mad. This disease strikes lots of children and infants. The policy makers need to see this and know what is going on.

I did not know that people look at this board to get evidence that supports their contention that lyme sufferers are loonies and whack jobs!

I will be much more careful about my "anger" from now on...its just sad that it is taking so long for the powers that be to wake up to Lyme and its impact. The last thing we need is to be dismissed as loonies!
 

On another front. It is important for all of you to understand the difference of talking about public officials and private citizens. Steere is a private citizen at the moment. Anything you say that defames him will land you in alot of hot water.

On the other hand you can say anything you want about public officials and there is no recourse for them, unless you are making public threats against their safety. I mention this because I know how angry we all are at Steere and some have chosen in a very public way to attack him and we have seen some of the consequences.

I am one in the belief of public protests. Especially at the CDC and NIH offices. Personally I think is is time to call out Dr. Gerberding in Atlanta. In my opinion she has failed in her duties as CDC director to protect the public. I think it is time for the President to take action and remove her.

Again on another front, the AMA is another organization that is getting in our way for treatment. I did not realize until lately how the insurance comanies are using AMA guidlines more than NIH guidelines when it comes to the paying of treatments and procedures.

This organization is made up of the very doctors that have comprimised our health in the first place. So now that we have LLMD's the original set of doctors that we all saw are still in control of our destiny.

Finally when it comes to conspiracies, you would have to be pretty clueless not to beleive that on some level for what ever reason a number of consipracies exist here. Getting them out in the open is the problem. I have talked to a few people that have been fighting GWS for awhile now, they are very bloodied.

There is no doubt in my mind that GWS and Lyme have some connection, it could be as obvious as Mycplasma to something that is hidden and currently unidentified, but the more you look at it the more reality sets in.

I guess my point is that this is something real big and out of control. We have seen influential politicians get the disease only to watch them be of very little help in fighting it. It does make you wonder though about how they were able to get rid of it so easy. Maybe just another piece of the conspiracy.

quote:

---

Originally posted by cave76:
Lisa suggested:
Strategies for exposing conflicts of interest/scientific fraud

and
Ways in which scientific data re Lyme has been distorted/spun/falsified/withheld to the detriment of patients

Maybe at the next march or ?? a serious and EASY TO READ flyer with those two points being explained in [b]non-inflammatory language could be passed out? (Or has it already? Hope so)

Hard to do that without looking like UFO trackers.

cave76
B]

---

I don't know if there have been leaflets handed out raising the issue of conflicts of interest. I know there has been some material on the websites of the LDA, LDF and www.canlyme.org has quite a lot. (Canadian Lyme organisation).

I think that some of the national organisations have been frightened to raise this matter too boldly, partly because they are afraid their organisation will be sued. I have to say, I have been saying publicly for nearly two years now, that the Steere camp are guilty of scientific fraud (including naming names), and no one has sued me yet.

On the other hand, I have had death threats, harassment and over 1000 libellous messages written about me on the internet by Ed McSweegan and one accomplice under his various aliases, so it's not all a bowl of cherries!

However, IMO if we do not expose this fraud for what it is, we will never defeat it. The "usual suspects" will always be calling the shots if we don't.

Cave, you say a leaflet should include these points, but be non-inflammatory. There is a problem here. Some in Lymeland, especially those in positions representing us, believe that the **very act of raising conflicts of interest ** is inflammatory, and will fight harder against Lyme activists who propose doing this, then they do against the Steere camp itself.

The point about UFO's is a different matter. There are people hanging around the Lyme groups who weave all kinds of crazy notions into the story about conflict of interest. Some of them have expressed those notions here. Most of them seem to belong to bizarre extreme right cultist groups. Apart from UFO's, they blame Communists (who apparently are in control of the US govt according to them), Jews, Mexicans, magical lizards (now that's really unfair because the western fence lizard is supposed to be an ally of ours and various other scapegoats, real or imaginary.

IMO the simple solution is to dissociaye ourselves from such people, and make sure they have no involvement in producing leaflets, organising meetings etc..If they are fomenting violence against innocent people who have nothing to do with the Lyme problems they should not even be allowed to belong to a support group, in my view, because they will spread hatred there.

However, the existence of crazy cultist groups that jump onto the bandwagon of the conflicts of interest issue (just as they jump on to the bandwagon of many other issues) does not detract from the legitimacy of what we are saying one bit, when we provide hard evidence to back it up.

That is the key, IMO, and that is the purpose of the new group.

Lisa


 

No one dismisses people as "conspiracy theorists" or nutcases just because they are having a march or a protest. I had this discussion recently on another group and I'm copying some of what I wrote here:

"I think we should take a lesson from history. Women did not win the
vote by avoiding all displays of "anger". On the contrary, the angry
campaigning and demonstrations of suffragettes (which often resulted in
women being arrested) led to the eventual capitulation of the
authorities and giving of the vote to women. Same for the labour union
movement. Without the angry demonstrations, general strikes etc, all
workers in your country would still be doing a 120-hour week, yet
unable to feed their families, and owing their soul to the company
store. Ditto for the civil rights movement and the South African
movement. "

I went on to describe the "Fathers for Justice" movement here in the UK (fathers fighting for their rights to see their children after divorce to be enforced). No one had heard of this campaign or knew much about the issue (other than those involved) up till a few years ago. Now everyone in the country has heard of them and they are actually receiving an awful lot of public sympathy. They stage both angry protests (they chain themselves to senior government officials, for example)and also flamboyant ones (dressing up as spiderman and climbing on top of public buildings etc).

Nobody calls them nutcases, not even when they appear on the evening news dressed as Spiderman! People understand why they are doing what they do.

I feel your fears about our enemies using our anger to discredit us are exaggerated.

It's true that there are individuals whose actions can discredit us (I've talked about that in my post above) and we need to dissociate ourselves from them. However, we do not need to dissociate ourselves from anger, because we have every reason and every right to be angry.

What we need to do is to understand why we are justified in being angry (ie to realize that our predicament is not just due to medical "ignorance", but **deliberate fraud and coverup**), and come up with coherent strategies for what we are going to about it.

The Steere camp has been dismissing Lyme patients as loonies from the word go. I am sure that if I took a poll of Lymeland and asled how many people had at some point been told their problems were all psychological, hypochondria, depression etc, I would find an overwhelming majority had had at least one experience like that.

And while it is not always a leading member of the Steere camp who is the one to say these insulting and callous words to the patient, neverthless it is **the climate of ignorance they have deliberately fostered** re Lyme that leads ordinary mainstream doctors to believe they are dealing with psychosomatic or psychiatric illness.

Then there are Lyme patients with real psychiatric symptoms secondary to Lyme, these can be anything from mild depression to full-blown psychosis. It is part of the disease as much as AIDS dementia is part of AIDS, and no one says that AIDS patients are all crazy just because some suffer dementia late in their illness.

The Steere camp will always try and stereotype us in every negative way imaginable. That's simply a fact of life. As long as we are keeping our house in order in terms of making sure that those who **officially represent us** in public are not saying that Lyme was brought to us by lizards from outer space or that Lyme patients need to buy guns and shoot down some Mexican immigrants, then I don't think we have anything to reproach ourselves for.

There will even be a few people who become so enraged they publicly threaten to kill Steere or his colleagues. This is inevitable given the number of people affected (and remember, even by CDC estimates there may have been at least 230 000 new cases in the US just in the last year counted - that's just in one country!).

There is nothing we can do about the odd one or two people who may publicly make such remarks. It is inevitable given the scale of the problem and the scale of the suffering (think how many people have lost a loved one to permanenent disability, or evn death).

There are AIDS victims who have gone out and deliberately infected as many people as possible simply because they are enraged that it happened to them. There are some who have murdered the person they believed infected them. Yet no one concludes that the entire multi-million population of AIDS sufferers are crazy and should not be helped, because of the actions of these few.

The Steere camp will call us crazy no matter what we do. Their cries will become louder the more we raise our voices in protest. That's natural. We are pointing the finger at them - justifiably so - so naturally they will do whatever they can to fight back. if no one gets on the internet and says let's shoot mark Klempner, they will invent an alias and post that themselves (in fact, the Steere camp trolls on sci,med have just done exactly that a few weeks ago.)

They often infiltrate people into the Lyme groups to manipulate us, and to derail any positive initiatives that are going on in the patients' movement. One of their favourite tricks is to invent an internet persona who joins a Lyme group, then warns everyone that speaking out against the fraud will get "us" discredited as crazy.

Don't fall for their trap. We have every right to be angry, and every right to expose what they have done.

Lisa

quote:

---

Originally posted by pippy:
Yeah Cave
It seems as though we will be dismissed as conspiracy theorists and paranoids if we protest or march or try to hand out fliers about how the scientific facts about Bb are being distorted for basically $$$ reasons.

Didn't that happen with HIV/AIDS in the beginning? How did the HIV/AIDS community get the attention of policy makers? AIDS is more graphic and always led to a horrible death in the early days, so that was part of the reason attention was paid to it....and the numbers of people dying grew alarmingly fast.

But when I think of all the little children afflicted with Lyme diesase, I get really mad. This disease strikes lots of children and infants. The policy makers need to see this and know what is going on.

I did not know that people look at this board to get evidence that supports their contention that lyme sufferers are loonies and whack jobs!

I will be much more careful about my "anger" from now on...its just sad that it is taking so long for the powers that be to wake up to Lyme and its impact. The last thing we need is to be dismissed as loonies!

---

When you all stop laughing I will continue...

This guy loves to climb buildings and we could sponsor his climb. We could all chip in money. Is anyone an accountant? Who holds the pot in this kind of situation?

What about the guy that put the beautiful flags in central park? I didn't like his pink wrapped building but I loved the orange flags in the park--and that's not just a Tennessee bias. What if we helped sponcor him?

This is going to cost money--but how much could it be to sponsor the climbing tick?

The art guy might be more...

Any other ideas?

L

 

quote:

---

Originally posted by cave76:

One last question----- *magical lizards*???
Where did that come from?? Must have missed something.

---

Oh, I followed a trail of links left by one of these conspiracy theorists and it led to the website of David Icke. Icke is a nutty Englishman who believes that there is a secret conspiracy by ominipotent reptiles to take over the earth and destroy the human race, or some such codswallop.

I guess the western fence lizard fends off the Bb because he's mixing with the right scaly crowd... )

Lisa
 

Pippy check out these sites...I can't seem to find any on early Aids activism but I am still looking..
http://www.endaidsnow.org/site/c.ikIYLeMSJrE/b.600265/k.CBCB/Home.htm
http://www.activism.net/
http://protest.net/activists_handbook/
http://www.videoactivism.org/

daniella

 

"ACT UP and Radical Activism

The institutionalization of ASOs led to a growing division between their supporters and other AIDS activists, prompting a resurgence of radical activism in New York City and elsewhere.

In 1987, activists formed ACT UP, or the AIDS Coalition to Unleash Power, and ignited a new phase of AIDS activism when it staged a Wall Street protest against the Federal Drug Administration and the pharmaceutical giant Burroughs Wellcome, developer of AZT, the first drug that proved efficacious in fighting AIDS.

Frustrated by what they saw as the political complacency of GMHC, ACT UP activists began to organize protests and demonstrations, using bold tactics and flashy images to pressure governmental officials and community leaders to respond more thoroughly to the disease.

ACT UP demanded more effective and accessible treatment options, challenged the public's bigotry surrounding AIDS, and promoted safer sex and other prevention messages to stop the spread of HIV.

Two of the most striking accomplishments of ACT UP were in improving treatment for people with AIDS and in generating visibility for AIDS issues. Much of ACT UP's initial activism focused on protesting the FDA and drug companies that controlled access to early AIDS drugs and working with them to streamline clinical trials.

One of its most striking and visible images was its striking graphic, a pink triangle with the slogan SILENCE = DEATH in black...

...Artistic and Cultural Activism
Activism in response to the AIDS crisis was expressed in artistic and cultural terms, as well as in more traditional political forms. A distinguished body of literature, art, dance, poetry, music, film, and performance art kept the disease in the public eye and gave expression to the gay community's sense of rage, pain, and loss...

Legacies of AIDS Activism
One of the legacies of AIDS activism is that it empowered people who suffer from a disease or oppression to take charge of their political lives and establish a greater degree of authority over what happens to them. As Steven Epstein writes, the AIDS activist movement "is indeed the first social movement in the United States to accomplish the large-scale conversion of disease 'victims' into activist-experts."........

For those already on the margins because of their gender, sexual orientation, race, class, or age, there are still barriers to treatment and education. Yet the past twenty years of AIDS activism has overwhelmingly improved the lives of PWAs and others.

AIDS activists have sped the development of effective treatments for the disease and have helped create acceptance and compassion for those suffering from the disease."
-Geoffrey Bateman

quote:

---

Originally posted by daniella:

Pippy check out these sites...I can't seem to find any on early Aids activism but I am still looking..

daniella

---

The more crazy the ideas and brainstorming the better...that is how creative action starts.
I love the Al Steer that the protesters at the NIH did! It was funny and made the point.

The human tick stunt is actually a clever idea...It's wild! my husband laughed so hard when I told him about that idea posted here he barely made it to the bathroom.

Stunts like that are what make the news....unfortunately.
We have got to come up with a way to get everyone together and send a message that will get some media coverage.
THis will happen....
 

b
 

Protests (clever ones) get the attention and sometimes the attention gets the $$$. Lesbian Avengers are very good with their "political actions." And they have active groups on the east and west coasts. We could all tap into our "own" separate groups (church, political, school, arts, disease etc) and maybe LYME could be the umbrella that helps us bridge some of our differences AND get noticed? Sounds like a good story for THE TIMES to me.

keep it up! Trails
 

It was a joke relating back to something I saw here about a terrible TIMES article that really po'ed us lymies. And someone wrote that you need to have an interesting angle on a story to get into THE TIMES, hence my joke. Didnt mean to offend.
trails

 

I am going to send him a letter.

We will see if he is interested--can't hurt anything, right?

Talk me out of this! but i have embarrassed myself worse--any one here been really hyper? Like the RunAway Bride? That will do it--I haven't been that bad yet.

L

Does he get in trouble with the law every time he does a climb? I would think he may be on probation or something and unable to climb...there are only so many times the authorities will let a person get away with doing stuff like that....sigh But if he would be willing to do it and get sponsorship, that would get some media attention.

I have been sitting here for the last few minutes trying to erase from my memory all the things that "well meaning" docs and mental health" people have said to me when trying to get help for my symptoms. Things like, "you really want to be sick...look at the payoff. You just don't want to work" That nugget of brilliance was in response to when I said I was so tired/fatigued I had to put my head on my desk and take a nap at lunch time at work...The worst part of lyme is dealing with other people and "helping professionals" who are IGNORANT...

could we take the money and just buy and island???
 

An airplane pilot into making his own custom made experimental, and other aircraft could make a plane in the shape of a tick.

So far I've seen Superman, the wicked witch of teh west,broom included,and some others--all in the form of an aircraft, and really flying.

I think an experimental aircraft in the form of a giant adult tick, with the various other forms in tow, or in the form of actual aircraft would be some site seen flying up and down the east coast when the beaches are packed like cans of sardines.
 

It could have a banner trailing behind that had a website URL for info abt lyme!

A captive audience on the beaches....sounds like it would be good. Some arial stunts and a wing walker up there and you'd really be in business!

 

But seriously, that would be so cool to see a plane in the form of a tick!