Topic: Submit your ideas for what actions the Lyme community should take
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
For those who would like to share their suggestions for specific actions that would benefit the entire Lyme community... please share your ideas here and now.
Be sure to let me know if you are able to carry out the plans (lead them) on your own.. if you can finance them yourself (or with the help of your own group or friends) .. and if you have friends to donate time to carry out the project.
We will also need a specific time period when you think this can be completed... and of course a location if applicable.
I will be happy to mention your ideas and suggestions for the upcoming meeting on Wednesday.
All submissions will be given consideration, however, this does NOT mean all ideas will be acted upon or sanctioned by those already working as volunteers for the community.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I vote for a million lymie march on Washington DC...
Preferrably in the spring...of 07.
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
What Tony said!
Michelle
Note: This is not to be construed to mean I won't help in any other direction possible when asked!
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
I think make Lyme awearness videos and posted on the net-
After christmas I am going to push making Lyme videos again--
My silly videos on the net have close to half a millon views- It would be great if they where Lyme videos--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
| IP: Logged |
sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
See me over in, "Activism",Tin...
Under,"What do we do now...or suptin'like that.. Posts: 4258 | From over there | Registered: Jul 2001
| IP: Logged |
the overwhelming evidence for fraud and racketeering has been in for years!
25 yr.+, imprisonment w/o parole for some authors of the idsa guidelines,drug, insurance industry executives, former, current prosecutors,governors,et.al. involved in the fraud and racketeering in the diagnosis and treatment of neuroborreliosis(a permanent brain infection), will put a severe chill on fraudulent research, diagnoses, and treatments for tick-borne infections.
million lymie march on washington d.c., for prosecution of fraud and racketeering.
for each state, a million lymie march on its capitol for same purpose.
for each state this would be more practicable.
as with tobacco, attorneys general must team up and collect $$$$$ from fraudsters and racketeers.
many states are running deficits. elected and future politicians can collect big time, reduce deficits, and get a surplus.
since this has become international in scope, states attorneys general should team up with their counterpart, legal entities of other countries to do this.
collectively, elected officials could get a billion dollars out of this, esp. if an international effort is made.
explore what laws,rules,and regulations w/rt nafta, gatt, etc., have been violated,w/rt the fraud and racketeering in the development of tests,diagnoses, and treatment(s), and let oversight autorities of gatt, nafta know this.
Word of caution... Most Every state that has or had a Lyme Bill Pending has had their LLMD's targeted and put through a living nightmare......Let's ALL think things through and learn from the past.
I posted this before on activism and the whole topic was erased...gone ...poof. Let's quit putting our heads in the sand. Mary
-------------------- This is only my opinion and/or experience with Lyme Disease. I am not a medical professional. Posts: 587 | From usa | Registered: Dec 2000
| IP: Logged |
the overwhelming evidence for fraud and racketeering has been in for years!
25 yr.+, imprisonment w/o parole for some authors of the idsa guidelines,drug, insurance industry executives, former, current prosecutors,governors,et.al. involved in the fraud and racketeering in the diagnosis and treatment of neuroborreliosis(a permanent brain infection), will put a severe chill on fraudulent research, diagnoses, and treatments for tick-borne infections.
million lymie march on washington d.c., for prosecution of fraud and racketeering.
for each state, a million lymie march on its capitol for same purpose.
for each state this would be more practicable.
as with tobacco, attorneys general must team up and collect $$$$$ from fraudsters and racketeers.
many states are running deficits. elected and future politicians can collect big time, reduce, deficits, and get a surplus.
since this has become international in scope, states attorneys general should team up with their counterpart legal entities of other countries to do this.
collectively, elected officials could get a billion dollars out of this, esp. if an international effort is made.
explore what laws,rules,and regulations w/rt nafta, gatt, etc., have been violated,w/rt the fraud and racketeering in the development of tests,diagnoses, and treatment(s), and let oversight autorities of gatt, nafta know this.
unfortunately, nobody has the balls to do that. there is a political hurdle to clear, probably many of them. the very people who control our country and the implementation of laws & supposed constitution are the ones who stand to lose most from a revelation of Bb s.s. truth in this country. That is my conclusion after closely studying the issue for the past two years or so after previously suffering tremendous tribulations for several years prior to diagnosis.
IMO, this was a bioweapons release. Look at the serum resistance profiles of various Bb strains...look at the s.s. genome...ospC clones...etc.
America does not belong to the average citizen, it belongs to a select elite oligarchy of stuffed pockets and empty shallow heads who could care less about the health of any given citizen. It's called internationalization, also known as the death of our country.
We're just a piece of real estate, a whore for the highest bidder.
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
| IP: Logged |
I have many idea's I'm working on, but this is what I'm starting with...
I'm starting an elementary school based, health project about lyme and ADHD here.
I'm speaking to the school nurses & school psychologists at all five elementary schools in my area this week, and bringing copies of the ABC's of lyme. Two schools have already agreed to sending the these home in backpacks.
I've also offered to step in as a parent contact at CSE meetings in our district for parents with children with ADHD. (I have a ton of experience with children with ADHD)
Am also trying to set up a parent workshop night through Cornell University to discus the ADHD/Lyme link so this can go home in backpacks as well at the same time.
I am very interested in setting up a program within the schools to educate children, parents & staff about lyme. (the truth about lyme) A program we could all contribute our time to in our own areas.
ADHD is epidemic & am very concerned that many of these children have lyme. The docter's dont even consider lyme in an ADHD diagnosis, nor do the schools.
Working on a couple other ideas too & will add them here also.
~Ma
Posts: 70 | From Central NY | Registered: Sep 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
PLEASE NOTE-
This post is to list what actions CAN be taken.. not to trash others ideas.
posted
I just wanted to add an idea about a different kind of lyme poster.
Something like a picture with a large group of people. Adults & children.
Saying something like "All these people have lyme disease and never had a rash" "Please support legislation for better testing and treatment guidelines"
I'd love to hang something like this up at the health department Posts: 70 | From Central NY | Registered: Sep 2006
| IP: Logged |
tailz
Unregistered
posted
I don't know how to go about this, but I know I did not get my Lyme from a tick. I think I got mine from a mosquito or flea.
I think there is a general feeling of safety in the medical community, and even amongst most Lymies, that we only need to really worry about ticks when it comes to these 'tickborne diseases' (there we go again!)
Is there any way we can get the word out to both doctors and the public that the tick is not the only vector? Sorry no ideas - but this has been bugging me.
IP: Logged |
posted
Tincup, I think you have your topics mixed up...Where's the "trashing" here. Just good info on ideas Mary
-------------------- This is only my opinion and/or experience with Lyme Disease. I am not a medical professional. Posts: 587 | From usa | Registered: Dec 2000
| IP: Logged |
posted
educate all law enforcement entities---local, state, and federal, esp. the nsa, cia,fbi,intelligence branches of the military, and esp. starting from the "rank and file," on up. most of the top people know, already.
notify unions, associations, clubs, of the above legal entities about blumenthal's actions.
many have access to the means to get dirt on the low-lives involved in the fraud and racketeering in lyme testing, diagnosis, and treatment.
too often they have to do foot chases through fields of tall weeds, wrestling criminals to teh ground.
god knows how many ticks and insects they pick up on their uniforms...
i think some will get... "very ****ed"... at teh fraud and racketeering w/rt the testing, diagnosis and treatment lyme and other tick-/insect-borne diseases, neuroborreliosis too often becoming a permanent infection, in particular,if they, themselves, and/or loved ones are being being destroyed before their very eyes.
Posts: 2708 | Registered: Feb 2005
| IP: Logged |
posted
someone needs to successfully argue for why the CDC Western blot bands should not be used as diagnostic tests. i mean, if you actually dig up the facts, it makes total sense. unfortunately, most people don't use sense.
but this is a big deal. it would probably take some super top notch lawyers along with medical professionals.
Posts: 98 | From San Francisco | Registered: Oct 2006
| IP: Logged |
Why run a test on Lyme disease if you are not using the bands specific to that disease. The CDC is the place to be. Why are they afraid someone will test positive... Mary
-------------------- This is only my opinion and/or experience with Lyme Disease. I am not a medical professional. Posts: 587 | From usa | Registered: Dec 2000
| IP: Logged |
posted
well, i've got ideas TC, however i admit i cannot fund them, nor do i have a group organized to pull them off!
so count me in to support whatever the LLMD's favor. ultimately, i think if we decide on one focus at a time, and work together, we might could pull off some major change.
if i had money and the ability to make a proposal, plan, and the way to execute it - it would definately be related to catching the entire panel of IDSA Lyme guideline authors with their pants down.
something along the lines of what is already in the works... to build off that momentum.
i still think the panel of BOZOS have done half the work for us there with their agregious, scientifically bogus selves. hey, we're sick - why not take all the help we can get, even if it's from them.
i say we back the Blumenthol action and back it quick. that would only require organized and synchronized communications and directions as to what and where to send to targeted individuals/media/institutions.
TIME FRAME: get the copy of info and hit all our local media and legislators by mid-January. mere mention of the protest, the speakers and the number OF SICK PEOPLE that showed is enough, most of the emphasis on the meat of the issue.
the fastest way to skin the rats in charge and toss out the pile of pooh paper they wrote would be timely and efficatious for all, IMO..
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
bettyg
Unregistered
posted
[QUOTE]Originally posted by groovy2:
I think make Lyme awearness videos and posted on the net-
I like Jay's idea, and building upon that, my recommendation is this:
UNDER THE SKIN documentary; when it is finished for EACH OF US to contact our local/state PUBLIC and SCHOOL LIBRARIES, advising them about this lyme documentary.
We could find out info for ordering, $$$, and personally give the requet to our public librarian who orders things!
This could be done in 2 months max; most will take 2-4 weeks unless you are too ill to do this.
*************
Members, please remember that Tincup wanted a TIME FRAME TO IMPLEMENT YOUR IDEAS AS WELL OK!
IP: Logged |
posted
i certainly understand, as a victim of Lyme whose children have been devistated -
and as such and a member of the community, i am concerned that certain advances i have witnessed over the years be held in an appropriate level of discretion and calculated advancement - so as not to blow what we have accomplished - but build on it.
i have no idea if answering your questions outright would do that, as i am not on 'the inside' - but i know enough of those who are to respect and hold immeasurable gratitude for what has happened over the past few years.
if sharing meeting details is not a problem - fine.
if it is - as a member of the community, i'd rather that info be protected and that we hear asap exactly what we can do to help.
satalite groups ****ing in the wind are just that.
there is a team of highly respectable, credentialed warriors working hard for us. doctors, lawyers, leaders of organizations who have actually carried out the kind of work you speak of for decades. in NY we saw and heard, there is now a TEAM of legislators hopping mad.
that is advancement. there is no denying that.
do we need to do more?? NO DOUBT. but i am finding some posts in this and a few other threads somewhat divisional.
LET'S BAND TOGETHER. the feeling we all got going to and watching over the rally events was wonderful and right on the center path. let's stay on it.
(afterall, wasn't the rally the catalyst for your eloquent expression of our collective motivation, tothepoorhouse?)
all i'm saying is maybe we should look and listen before jumping to conclusions as to what is or is not good enough. build on things. build strongly.
the case against the guidelines is STRONG. VERY STRONG. CREDIBLE. IT HAS GREAT POTEBTIAL TO BRING CHANGE QUICKLY. we finally have an AG on it like a monkey on a cupcake. this is the biggest thing i have witnessed to date.
IMO, it's the best chance we've had ever - if we all work together.
mo
[ 05. December 2006, 01:32 AM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I am seeing some VERY good and constructive suggestions here. VERY good!!!
Keep them coming! Please! I want to hear your ideas on what we can do to help fix this situation we are in.
Good work so far!
````````````````````````````````````````````
Mo said.. "well, i've got ideas TC, however i admit i cannot fund them, nor do i have a group organized to pull them off!"
Good point Mo. I'm afraid I've not thought that through when I first posted. What I was trying to point out is.. although we may get some wonderful ideas... it won't always be possible to carry them out without the backing and resources required. I meant to suggest we need to be prepared to work on these ideas ourselves if need be. As everyone knows... we can't expect others to do all the work, provide all the funding and make all the arrangements.
Soooooooooooo.. let me change that to..
What ideas do you have that you may be willing to lead, do, and fund if need be... or that could be taken on by bigger groups with your assistance.
Is that better? I hope so. I didn't mean to restrict all ideas like it sounded.
```````````````````````````````````````````````
I would once again like to request that we stick to the topic and only provide constructive ideas. This post is not for commenting on others suggestions or ideas, but rather to have a place to share YOUR ideas. I would like everyone to feel comfortable having input and not worry they will be singled out in any way for their valuable contributions.
posted
I do not have the time, energy or funds to implement any of these ideas, but will help as I am able.
Most of my ideas have to do with educating people about Lyme and tickborne illnesses while increasing visibility and awareness of these diseases.
Is there a Lyme Awareness Day? -- if not that would be a good place to start in getting the word out. Don't know what day would be most significant in Lyme history. A proclamation from a governor or the President or even such a proclamation from the LDA or ILADS could be widely published and get lots of print.
This needs to be an annual event and could incorporate the march on the CDC or Washington or the State Capitals.
I think just about everyone on this board has been referred for a psych analysis at some point in their illness. Psychologists and psychiatrists are sadly uneducated about tickborne diseases.
Even with a positive PCR test hubby had no luck convincing numerous such people that he had a physical illness and was not just anxious and depressed. There is already lots of good literature on the psychiatric effects of Lyme, but it is not getting through to the right people. These docs need to be educated and also told where to refer their patients for help.
While hubby and I were traveling the country in search of a diagnosis being referred from doc to doc the people who I ran into that tried to help the most were health food store clerks.
We were always buying some new nutritional supplement to try out and the most frequent suggestion we got was asking if hubby had Gulf War Syndrome. That is the mystery illness that most people can relate to.
My point is that almost every health food store has a rack of free info. I would bet that most all of them would be willing to display free Lyme literature and I would be willing to bet that it would help more people get diagnosed.
We did not own a computer at the time and hubby was too sick for the most part for me to leave him alone to go to the library or an office supply store to use the PC. Not everyone has access to a PC or uses it for medical research.
If I had known how inaccurate the Western Blot test was hubby might have been diagnosed over a year sooner. But without a rash or known tickbite and never having met anyone with Lyme I didn't know any better than to believe the docs at the time. THESE ARE THE MOST IMPORTANT FACTS THAT NEED TO BE POINTED OUT.
The 2nd group of people who were most helpful were the people we met in doctor's waiting rooms -- especially the alternative medicine docs. I know that ACAM (American College for Advancement in Medicine) had Lyme as a focus during one of their recent semiannual conferences. I would suggest sending literature to these docs that can be displayed in their waiting rooms -- they get a lot of CFS/FM patients.
And finally the biggie is hospitals -- since the Big name University hospitals are so opposed to Lyme disease maybe we need to concentrate on educating the smaller local and regional hospitals.
For now, ASAP need to get paper petitions in all health food stores and ACAM doc's offices. Many of these places have the petitions against CODEX already so I think they would be receptive to this idea.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
I am finding that people do not know about ticks, Lyme disease and co-infections. So I am handing out literature constantly -- brochures, a half-page info sheet I typed up(I would post that text here too if it was wanted by anyone), a wallet-sized slip with Plague Alert on one side and websites on the other. The Plague Alert text is at my Dec 2 5:28 post.
These are easy actions that I can handle, vs other ones like traveling and handling scheduling of meetings which is difficult for me to do with this unstable condition.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Idea: print out pictures from the rally and post them. People pay attention to pictures. There's a good one, for example, of a little girl holding a sign about being born with Lyme. On pg 2 of the discussion about marching on DC next.
Put a caption on it, like Hundreds turn out for millions at November 30, 2006 Lyme patients rally, Valhalla NY; add the websites for signing the petitions for the Congressional funding and against the IDSA guidelines, etc.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Everyone start calling the public health depts to say we want them to start taking this situation seriously.?? Ultimately, I would want them to take responsibility for literature, education, proper testing and proper treatment. We're a long way from that right now.
I called the Monterey Cty, CA health dept and had quite a discussion with them when I finally found out last spring I had gotten Lyme in their county 25 years ago.
The local DPH has a brochure for West Nile and a poster for testing for syphilis(a spirochetal disease) but nothing for Lymedisease/coinfections. And just which diseases are spreading the fastest right now?!
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Get investigative reporters to write major expose articles and books, people like Greg Palast, etc.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
If Lyme/co's can be transmitted through blood transfusions, then I think some major planning should go into dealing with this issue.
General info, rallies in front of bloodbanks, info about the darkfield microscope's ability to see the organisms(Roy's recent post -- very interesting -- could it be a tool for bloodbanks to use?), even national legislation created to make blood transfusions as safe as possible if we have the scientific means to do so.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Do vets know? Is there any need to organize a campaign for vet awareness?
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
I think litigation is our best bet - like class action lawsuits for treatment refusals. I think patients should go after doctor's who refuse to test, acknowledge, the disease.
Theresa
Posts: 364 | From California | Registered: Sep 2005
| IP: Logged |
posted
I like the idea that was on here months ago.We have been catering to these people for years.Lyme patients are to ill,too poor from,meds,and suppliments,to travel.I am going with the threatening to give blood,all over at different times,at various blood banks,starting at a certain date.If we are cure'd,and have documentation of being treated for a month shouldn't be a problem.LET THEM,come to us this time.I'm telling you it will work.If you were a healthy person,would you want a lymies blood,get the healthy people involved,then you win.Without something this drastic,people who dont know this illness,do not care.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I suggested this million lymie march on Washington to be held in the spring because...
That's when the Ticks wake up.... That's when a lot of us feel better...
DC is very cold in winter and very hot in summer...but spring should be just right...
I would need time and I suggest others that can to get names and addresses of folks in their state who they can charter a bus for and pick up at various stations on their way to Wash.
The LDA would need time to organize housing and potties for us...
This would be a NON-Violent grassroots protest about our treatment...which won't cost us lawyer fees...
besides...I've been the lawyer route and they stick to ducks a$$e$ like flies on sh!t...
sorry.....
But they sorta have a kinship going...
Besides...lawyers need to have their cases won for them BEFORE they go into court...and having a bunch of lymenuts as clients does not help the fight... We would make crummy witnesses...especially if the cross exam got us pi$$ed off...
My heart tells me it's not the way to go...my adrenalin tells me it is...but...ya know!?
I know we should do something sooner...but who the heck wants to go sit outside in the cold...
Course we could protest the CDC main headquarters in Atlanta Georgia....where winter isn't too bad.....
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I just had a revelation of sorts...
Is it possible to establish a ILADS house like a Ronald McDonald house to house and treat indigent lymies...
Ya know like Patch Adams....
Say centrally located in Hot Springs Arkansas... (near hot springs for a reason...external hyperthermia)
And Arkansonians know about lyme disease...
Have a LLMD or two on staff...and have some place for folks to go that have little or no hope of getting treated otherwise...
Or has someone suggested this already?
Let me know what you'all think of this one...?
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
I had suggested this idea before this group did this....
It only took a hundred people and look at all the press they got!
Pictures are in the site but did not copy here.
So, why not?
November 18, 2006
``V'' Makes A Mark In DC
Worldwide Interest in RTP Stirred
It's working.
We are making good use of the powerful concept of en masse activist resistance used in the movie, ``V for Vendetta.''
``V'' is helping us as we build support for the unalienable Right to a Response from Government to our Petitions for Redress of Grievances regarding the Government's violation of the war powers, tax, privacy and money clauses of the Constitution.
``V'' is helping us as we educate the public about the First Amendment's guarantee of our Right to Petition Government for Redress of Grievances.
On November 6, 2006, a lone man in a ``V'' mask and clothing visited security checkpoints at the White House, the main Treasury Building, the Department of Justice and the Capitol, to deliver a letter and the Petitions for Redress. A short videotape of the encounters has made its way around the Internet, including links from sites such as MySpace.com.
The letter informed the leaders of the Executive and Legislative branches of the federal government that up to 100 people in ``V'' masks and clothing would gather in silent vigil at those locations on November 14th to await a response to the Petitions for Redress.
True to his word, at 11:00 A.M. on Tuesday, November 14, 2006, nearly 100 men and women in ``V'' masks and clothing could be seen walking along different streets in downtown Washington, DC, all heading to Lafayette Park across Pennsylvania Avenue from the White House.
By high noon, the ``Vs'' were facing the White House, in formation. Some were holding a 40-foot by 25-foot banner that read, ``Dear Government...No Answers, No Taxes.'' Four were holding smaller signs that read ``Obey The Constitution - The Right To Petition.''
They waited about one hour for a representative of President Bush to approach them with some response to the Petitions.
As has been his wont, the President did not respond.
However, photographers, reporters, and tourists responded well to the rich imagery provided by the WTP demonstration. The appearance of dozens of ``Vs'' delivering such a message was attention getting to say the least.
There was a sidewalk press conference with one ``V'' who had a red rose protruding from his hatband. No tourist with a camera could resist stopping to photograph the scene, whether he or she was alone or part of the very large group of high school students that was on its way to a tour of the White House.
The ``Vs'' on the outside edges of the formation distributed hundreds of We The People Foundation brochures to anyone requesting one. The supply was nearly depleted by the time the formation moved on to the next location.
After the silent vigil in front of the White House, the ``Vs'' broke ranks and reformed, with banner and signs, a few hundred feet down Pennsylvania Avenue, directly facing the main Treasury Building where they waited a half hour for a representative of Treasury Secretary Paulson to respond to the Petitions for Redress -- especially the Petition regarding the privately owned Federal Reserve System and the violations of the money clauses of the Constitution.
As has been its custom, Treasury did not respond.
The number of photographers and reporters declined at this point, but the interest among the picture-taking tourists did not.
The ``Vs'' then marched down 15th Street and Constitution Avenue to the Department of Justice, where they waited for a half hour, with banner and signs for the Attorney General to respond to the Petitions for Redress.
As has been its tradition, the Department of Justice did not respond.
Interestingly, one professional photographer for the ``Foreign Press Photo Service'' took dozens of carefully crafted pictures while the ``Vs'' were waiting outside the DOJ building.
The ``Vs'' then marched to the Reflecting Pool and faced the Capitol as they waited for representatives of the House Speaker and Senate Majority Leader to respond to the Petitions for Redress.
Habituated, Congress did not respond.
Knowledge About Our Cause Is Spreading It is too soon to know the full extent of the public's information and awareness about the DC event. Here is what we know so far.
We received an email from a reporter who works for Brazil's newspaper website http://www.estadao.com.br. He is writing an article and wanted us to answer a few of his questions.
We received an email from the Director of the movie, ``V for Vendetta.'' He was aware of our events and said he wanted to send a few words of encouragement and was happy that ``V'' had made it into the popular vernacular. He closed with the words, ``Fight The Power.''
An article will appear in Monday's issue of ``TaxNotes,'' which is America's leading tax news and research magazine.
We received word from a man who stated that while he was passing through an airport Tuesday, he saw television images on CNN of the ``Vs'' across from the White House.
If anyone learns of additional media coverage, please let us know.
Coming: 1,000 ``Vs'' in DC Plans are now underway for a GiveMeLiberty 2007 Conference. Most likely it will take place in DC on a Thursday, Friday and Saturday. On one of those days we hope to assemble 1,000 ``V'' demonstrators on the street in support of our Right to Petition the Government for Redress of constitutional torts, including our Right to a Response and our Right of Enforcement if Government does not respond to our proper, constitutionally based Petitions for Redress.
We hope to convince those who were responsible for the making of the movie, ``V for Vendetta'' to help us obtain, hopefully by donation, the 1,000 ``V'' costumes needed for this next WTP event. If this happens, we would then give one to every person who attends GML 2007.
More to come.
Watch the streaming video documenting the lone V's visit to the Capital and his valiant efforts to Petition the officials of the Government.
Try the high resolution link first: 250k cable If you only have a dial-up connection use this link: 56k dial-up
Please consider a donation to the WTP so we can continue to move our mission forward. Click here to make a tax deductible Donation to the We The People Foundation
Our address: We The People Foundation 2458 Ridge Road Queensbury, NY 12804
sizzled
Frequent Contributor (1K+ posts)
Member # 1357
posted
P.S. I have no affiliation with this group OR the movie,"V".
Just found the idea from the movie interesting.
Posts: 4258 | From over there | Registered: Jul 2001
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Some random thoughts....
1. Lyme-informative T-shirts, sweatshirts, appliqu�s that can be sewn onto jacket and coats - and wear them a lot. If you don't like lime green, then make the letters in lime green. In my area, a sweatshirt that says something like ``Yes, we have Lyme Disease in Colorado.... but most people here will never find out they have it.''
There were some TERRIFIC signs and posters at the rally if anyone needs ideas for a t-shirt. See all the pictures at the Lyme Rights Protest webpage (click on the link near the top of the home page). http://lymenews.org/index.html
2. Make a list of medical associations and pharmaceutical companies to contact, and divide the list up so that members here only write one or two letters each. In fact, a form letter could be drafted by some of our more talented members and used by everyone.
Each letter could simply state that the person writing represents a Chronic Lyme Disease group whose members are seeking support and information from the medical community. That would suggest that there are many people behind each letter. I think that would also imply to the recipients of the letters that their responses will be shared with others.
2.a. We could write to the American Medical Association who has lots of commercials right now claiming that they want to help patients get treatment and insurance coverage.
We could ask them if they are aware of the millions of people out there with chronic Lyme Disease, ask them for their help in advocating treatment, and ask them not to support the flawed IDSA guidelines, etc.
If nothing else, their responses may help us determine where they stand, and provide evidence in the event their public policy contradicts what they may answer to us.
2.b. We could do something similar with the American College of Osteopathic Physicians, and I'm sure there are many groups we could put on the list.
And that might include every known blood bank in the state in which we live. Ask them to reject the IDSA guidelines for the sake of their recipients, and ask them to demand that the FDA, the NIH, and the CDC expend funds to develop and/or approve a cheap, quick test to screen blood (like the Bowen test or darkfield microscopy).
2.c. We could ask questions of some of the more prominent pharmaceutical companies. For starters, I would love to ask if these companies even acknowledge chronic Lyme Disease and if there is any ongoing R&D for treatment of chronic Lyme.
Pharmaceutical company commercials are always so full of compassion.... well, let them tell us how much they care about us and what they are doing about it.
3. We could resurrect a similar letter to the ``Refusal to Treat'' document idea, which could incorporate the ``Two Standards of Care'' language. The document would state that the patient wished to be treated according to ILADS standards of care, as opposed to the IDSA recommended guidelines.
The doc/duck would be asked to sign the document simply as an acknowledgement of what treatment the patient was requesting. If he refused to sign, then the patient's witness and the patient would sign the document stating that the doctor refused to sign.
Frankly, I don't want to try to hang any doctors with this. But it will get the MDs and DOs aware of how informed their patients are, and how ill-informed they themselves might be.
4. We might try to link up with some other national organizations where Lyme can be a major factor, like support groups for MS, RA, Lupus, ALS, Alzheimer's, even ADD or bi-polar support groups and forums.
I really don't know if this is possible or not, but it would sure give us a much broader base of supporters. Not to mention the fact that there are still too many people with auto-immune disorders who have no idea that Lyme could be behind their illness.
Besides that, people pay attention to the ``serious'' diseases. Even in my Lyme-illiterate community, an article or letter to the editor that began with ``My MS was caused by Lyme Disease...'' would get attention.
5. Rallies and marches: Good ideas, but we must be aware going in that we may not have much impact because the media coverage is likely to remain very local.
As I've stated elsewhere on this forum, we are up against members of the media who belong to the EIS - the Epidemic Intelligence Service - a group that Steere belongs to. We have to be aware of this so we understand WHY we may not get the coverage we think we should.
Still, for planned rallies or protests, I would be happy to pay someone $5 or $10 to put my name on a sign there or something - to represent me.
Each protester could be allowed to represent maybe 10 or 20 other people. This would financially help those who take the time, spend the money, make the trip, and buy materials for these protests.
A ``million man march'' would be really something, but first we need to be able to get more than 19,000 signatures on an IDSA protest Petition!!
By the way, I see the online IDSA protest Petition page is still up - and it is still counting. Does that mean people can still sign it at this point?
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Geez sizzled...
we don't want to wear masks...just green...
Tracy...
It's million LYMIE march...there's probably more women then men for some odd reason...
Besides it's just a figure of speach...
I doubt if there were a million men at that other march...but I lost count after 712,934...they did'nt all fit on my TV screen....LOL
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
TinCup-
thanks for this thread, and for soliciting input.
someone asked, and i may have missed the response, and sorry if so, but is the Wed (tomorrow??) meeting with LDA? Local support group?
Who will be looking over the ideas?
thanks- Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
posted
I like Tony Z's idea about the Ronald McDonald type house. This kind of fits in with the proposed Lyme treatment center. What can we do to make that become a reality?
I think the treatment center should be a very high priority for all Lymies. If enough chronic Lymies can be cured and the research documented at such a center it just adds more ammo to the ILADS position.
Legal actions need to continue, but personally think that will take years to get anywhere if we are lucky enough to get positive results.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
I still think one of the best ways to not only bring NATIONAL but INTERNATIONAL attention to the Lyme issue is to CONTACT OPRAH.
When Oprah speaks, the WORLD listens! Look at what happens when she promotes a book, idea, item, etc. on her show- it takes off like a rocket!
I know this has been and still is being attempted but it would most definitely make a difference in the fight to bring this horrible disease to the forefront and make a difference!
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
posted
Great ideas...The educating of people is a big key . The more demanding proper treatment the better.
I live in a rural area and even my Chiropractor has Lyme info in her waiting room.
Michigan's MLDA is doing a great job in educating the public. They have been around may years though..the progress is accumulative.
I don't hear the comment of " You have what?" much anymore. They are much more aware here.
Mary
-------------------- This is only my opinion and/or experience with Lyme Disease. I am not a medical professional. Posts: 587 | From usa | Registered: Dec 2000
| IP: Logged |
posted
Here in New Mexico we have a local public access channel on cable that will help you put together your own show on anything you want, as long as you aren't selling anything.
I was wanting to put together a show about chronic Lyme disease, and run it regularly on the public access channel. They will also give you a video of the show that you can use after doing it.
I was thinking that if we could get people to do something like this everywhere there is a local cable access channel, it would be a good way to start getting the word out into local communities all over the country about Lyme.
Then people could use the same videos and place them on the Internet, or to do talks with. We need to get the word out in local communities at the grass roots level that this is a serious and debilitating epidemic.
I think constantly banging on the door of the medical establishment without getting people on the grass roots level to know more about this illness only gets us so far before hitting a brick wall.
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
| IP: Logged |
posted
Question: what the CT AG is doing, is he the only one who needs to take the action he's taking, or will other AGs throughout the country need to get involved too?
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
I want it to be mandatory that everyone who needs to be tested and treated adequately for Lyme can so do, and I want there to be the political/economic setup to do so.
I want it to be mandatory that insurance cover adequate testing and treatment. I want it to be mandatory that doctors accept our insurance. I want it to be mandatory that people without insurance are able to get adequately tested and treated.
I have insurance and the llmds/nurse practitioner won't accept it. I can't afford to pay them out of my own pocket, because the fees are so high and my own medical expenses are high. I think they need to accept our insurances. I am without a Lyme-treating doctor now and I am very sick with Lyme after 25 years of not knowing I had it.
This situation is WRONG. We need medical care available!!!
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I and SEVERAL others have tried OPRAH....
Ole Harpo has not responded...
Maybe we should march on her!?
Yeah and I sent stuff to Montel and DR Phil...you would think that Dr Phil would be interested because of the psychological crap!
I even sent stuff to ole Geraldo...no replies...
Sorry Robin you can't get stuff... So look maybe you could slide on down to Tijuana!
I would if there were'nt so much crap and killing going on in Mexico lately...well you could go durring the day!
One of our lymies is a local cable channel host down here in Clearwater...J.Sloane....
I should ask her...
Go get em Tinney!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
What if.... people like Oprah, Giraldo, and Montel got about 100 letters all within a couple of weeks?
Let's say....
In January 2007, we have a campaign to get letters and e-mails off to Oprah during the last 10 days of the month....
In February 2007, we do the same thing and send letters to Giraldo the last 10 days of February....
In March, maybe we send letters to Montel...
I suspect more letters all at once could make a difference....
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
posted
I was at a convention recently in Dallas. Oprah's "Steadman" was a speaker. He works with charity organizations. Maybe he could be of some help...?
Mary
-------------------- This is only my opinion and/or experience with Lyme Disease. I am not a medical professional. Posts: 587 | From usa | Registered: Dec 2000
| IP: Logged |
I am happy to share some of my ideas. I hope that you get these prior to your 'meeting':
1. Change the name of the LDA to National Lyme Disease Association. If they truly want to represent the Lyme movement in the entire country, the name needs to reflect this effort. (Think about the American Cancer Society, American Foundation for the Blind, National MS Society, National Kidney Foundation, National Hemophilia Foundation, American Lung Association, American Diabetes Association, etc.)
2. No way around it, the LDA needs staff. Most national organizations pay a director and have someone helping with marketing, grant writing, and fundraising. There are lots of grants out there. Is the LDA applying for any?
3. Sorry and I don't mean to offend, but the LDA association website is very unorganized and needs to be redone. It needs a more professional appearance and needs to more user friendly and easier to navigate. I have a lot of suggestions for the website and WOULD be WILLING to help out with this project. When you compare the LDA website to other major national disease related organizations, the LDA gets a thumbs down.
Having a more professional website will increase donation potential, give more validity to the organization, and allow for continuity in information dissemination.
Main Sections only on main page could be:
- Learn About Lyme
*LD facts, statistics, research programs or clinical trials * Information for patients and families * Health Care Professional * treatment resources
- Join the Fight Against Lyme subsections - Donate, Participate in Events, Volunteer, Advocate for Change
- In the News subsections - press releases, articles, new research, etc
- About the NLDA - NLDA Gift Store - books, t-shirts, bags, etc
3.a. Joint the Fight Against Lyme: Donate Section
>>Why Donate to the LDA? - How the money helps - Rating (www.charitynavigator.org) >>Donate Online Now (Secure online transaction with contact form, drop down menu for gift restrictions ie research only or education only >>Donate By Mail or Phone (form) >>Memorial and Honor Gifts (form) >>Matching Employer Gifts (downloadable form) >>Planned Giving (Estates, securities, etc) - Request for more information about planned giving (online form) - Contact Professional advisors from LDA >>Car Donation (LDA needs to get registered with www.cars4charities.com)
3.b. Joint the Fight Against Lyme: Participate Section
>> Living Lyme Walk >> Unmask A Cure Gala (work with Turn the Corner) >> Lyme Disease Awareness Month, or Week or Day >> Lyme Rights Rallies >> Wear Green to Work Day (all employees that wear green to work must donate $5. Employer match preferred.) >> 'On The Green' Golf Tournaments >> Lyme Lobby Day >> Send a LD awareness E-card >> Face of LD website (check out www.faceofms.org)
3.c. Joint the Fight Against Lyme : Advocacy Action Center. >>2007 LDA Legislative Priorities Examples: *Support increased funding for research *Support efforts to improve health insurance coverage of medication and testing * Support efforts to increase safety of blood supply * Support legislation to reduce and prevent suffering , etc, etc
>>Legislative Action section - Talk to Your Legislator Section. Auto links to contact legislators(USE www.capwiz.com and www.e-advocates.com) - Guide to meeting with your legislators - Tips for writing to your legislators - Sample and standardized templates
>>2006 LDA Legislative Accomplishments
>> National Action Alerts - News about federal laws - Action needed by all states - Petitions - Proclamations
>> State Action Centers (I should be able to click on a state on a map or drop down menu and have my state action center come up. Includes state related news about legilation and advocacy initiatives.)
3.d. Joint the Fight Against Lyme: Volunteer Section
>> How to Get Involved Locally (links to contact info for state and local lyme chapters)
>>Recruitment Kit - subsections include an standardized Advocacy Guidebook, Volunteer FAQ, Recruitment Letter (to share with others) Media tips
4. LDA needs to do a better job with standardized press releases that we could submit to the local media. We want articles throughout the year relevant to the issues. The website must also have a media section with news, Lyme talking points, public service announcements, FAQ, etc.
5. We need standardized information packets for all chapters to download and reproduce. It is frustrating that we have to go searching on the internet for concise information, end up putting together our own information packets for doctors or specific organizations. When each individual organization has to spend time gathering and creating materials it wastes valuable time and financial resources. If this is available the LDA association does not do a good job of letting us know.
We need a very detailed DOCTORS education Packet standardized!! We need a children's lyme packet standardized with info for educators! A general packet that we give out to public with basics if I wanted to present information to a local garden club, etc). We need a Patient LYME packet for newly diagnosed families with Lyme.
If the above was done at the top, everyone across the state would be giving out consistent information!! We wouldn't have a million different lyme chapter websites and brochures with different information. Think about the American Cancer society. Local chapters do NOT have to come up with their own educational materials. It is done at the TOP!
6. Marketing materials!! (Includes re-do website, brochures, about LDA DVD's, public service announcements, posters, power point presentations, standard print ads for magazines and newspapers, printed promo materials like t-shirts, bags, cups, pens. State and local chapters could order these items for distribution.
7. The LDA website needs to link to the Lyme Memorial website www.lymememorial.org
8. Work with Turn the Corner Foundation is ESSENTIAL!! Check out their Board of Directors!! They recently had the Unmask a Cure Gala that earned $600,000. Can this be replicated throughout the nation? See my other ideas above like Living Lyme Walk, On the Green Golf tournaments, etc.
9. LDA needs a representative that state chapters can go to for legal issues, like setting up non-profit status, handling large donations, etc.
10. My Awareness Ideas: -Lyme Disease Awareness Day or Week Proclamation (drafted by the LDA)
-Living Lyme Walk (Coordinated nationally so that the walks are during the same week nation wide or on Lyme Day)
-'On the Green' Golf Classic
-Wear Green to Work Day
- Lyme Memorial Tree at the Festival of Trees - Many communities have what they call Festival of Trees during the holidays where organizations or individuals decorate a Christmas tree in a theme of their choice. There is a paid admission to go see all the decorated trees and money generated proceeds a local charity, usually the sponsor of the event. Why not decorate a tree with Lyme green bulbs and then laminate pictures of deceased Lyme victims (with permission) to raise awareness of LD? Put brochures under the tree, and a few giant rubber ticks of course.
-LD awareness E-cards to send to friends and family -Awareness packets sent to summer camps -Presentations targeted to your state school nurse association (many have an annual conference) -State public health conferences -LD awareness presentation and packets to state cubscouts convention -send LD info to all landscaping and tree service companies in your town or county
I have a ton more ideas but my hand hurts from typing. That's all for now!
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
| IP: Logged |
bettyg
Unregistered
posted
Tracy, can you break up your long paragraphs of good ideas; I could read just a little of what you typed about ok! big thanks!
Someone mentioned vets:
On a nearby radio station 2 days ago I heard them talking about LYME disease, and that all dogs/cats should be checked frequently for them.
So radio would be an option too by contacting ALL VETS nationwide. Sorry, I need to leave, but after reading what I did; if I didn't get this down now; I'd have to start reading ALL over again and that's a NONO for me!
IP: Logged |
MRB
Unregistered
posted
Perhaps this idea has been presented before, but I'm wondering about the feasability of forming some sort of purchasing collective powerful enough to get significant discounts on widely used Lyme meds.
Going "National" has me a bit leary...too much $ going through a few hands. Each state should
have their reps. with equal voting rights. Be allowed to represent what their own state's board votes for.
Mary
-------------------- This is only my opinion and/or experience with Lyme Disease. I am not a medical professional. Posts: 587 | From usa | Registered: Dec 2000
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The GOOD news and the BAD news...
As I said.. I would share this at the meeting today. I did. Kinda.
But.. they all said they would rather eat rocks than listen to me for ONE MORE MINUTE... so I didn't get to tell them all of your ideas!!!
BUT.. I did tell them.. keep in mind this was a phone conference.. and it was already 2 hours plus long...
But.. I told them about this post here.. and they were VERY interested.. and they all wanted to read your ideas for themselves. Over a dozen or so folks on the call.
Soooooooo.. I sent them all the link so they could come here to review each post.. one at a time.. just as you wrote it.
Truth is.. that was actually better than me trying to relay your info on the phone... cause I would have surely messed it up somehow!
Do rest assured your messages ARE being heard!!
Watch for future action alerts... ok?
And thank you all for sharing. There are some great ideas here... and you all should be proud for making the contribution.
Another suggestion, have the New York Lymies ever thought of protesting outside the "Today Show"?
I think that is the right one -- don't have a TV right now, but I am talking about the morning show that used to have AL Roker as the weatherman and they always had film clips of the audience outside the studio windows and sometimes spoke to a few of them live.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
bettyg
Unregistered
posted
today we have a tv producer, MikeM, join us! i asked him what types of shows he's involved in. stated we needed lyme educational shows; coud he help at all; he's offline since i'm on here wierd hours!
i think this would be worth pursuing; don't you planning committee???
can't use my left hand well for last 3 days; cant hold pen to write ... so painful; never had anything like this before.
IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Sorry, bettyg - I didn't realize my paragraphs ended up so "fat". Is it okay now?
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Hire a PR company.
Hire a PR company.
Hire a PR company.
If we do something with great effort the world has to know about it.
Choose the company wisely!
I know that LDA has rejected the idea before but look how few reports from the last protest have been published.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
Obviously not. It was already used before with only mediocre results. We need a company that would be well connected and able to place our messages in the right media and in the right way.
We need to get to the HEART and SOUL of an average American.
He/She needs to feel our PAIN and DESPAIR.
Only then things will change.
Last time we have presented ourselves as a bunch of malcontents who didn't like some published guidelines. It was not a very catchy message and we didn't get to hearts of the people.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[sleepy]](graemlins/sleepy.gif)
Printer-friendly view of this topic