posted
We are all so proud of those who attended the NY protest!!
You are all so much stronger than I am. I'm failing again, even after IV treatment.
Can I make a suggestion for the next media run?
This protest came up pretty quickly and didn't allow those on the boards to make arrangements for travel.
I doubt that most of the media there will make a difference, even if you all tried to with your hearts and souls. I love you all for representing me.
Little protests don't get media attention that they should. It's just a fact of life.
Can we learn more about a BIG protest, perhaps on the Capital Rotunda that we can all plan for to fill the mall.......and we have to stop being nice. The media just smiles and says, "cute".
We have to get ANGRY....we have to fight hard....and don't take NO for an answer!!!!
(Please, don't flame me....I want the next protest to be in Washington, DC, when the Senate and Congress are in session. I want to prepare to fight my way to the media and tell them what this disease has done to my life!
A few hundred of the brave are the starting point. Next, we need thousands to protest.
For organizers, please give us time to plan and medicate and alert every major news media we can beforehand.
We should bring our kids and our animals.....maybe even a few viles of lyme ticks to threaten DC politicians.
I want to get MAD, and I want you all who have worked so hard to fight get recognition and healthcare.
Let's take on the insurance companies head-first...and never stop pushing until they give.
You are all such wonderful upbeat people, but be careful not to look so healthy and happy (with the smiles in pics)..... we won't be taken seriously then. We just look like 60's flower children who want a protest.
Let's make them KNOW WE ARE MAD AND WON'T TAKE IT ANYMORE!!!!!!!!!!
(Can you tell I'm troubled that not one of my local news agencies in PA even picked up this story, even though I alerted them to the protest?)/
[ 02. December 2006, 10:43 AM: Message edited by: tothepoorhouse ]
Posts: 867 | From PA | Registered: Jan 2006
| IP: Logged |
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
others may disagree, but i absolutely, 100 percent agree with you.
no political change has ever been won by being 'nice.' ever.
posted
Interesting idea, to take on Congress, especially with the new session coming up and the two Lyme-funding Congressional bills. A rally on the capitol steps and then go inside as well to visit the offices?
I know any rally is such an effort for anyone with these conditions, so it has to be thought out so that people can manage it.
Also, it takes more than a rally -- it's all the changes that we need to advocate for in order to get the medical treatment and awareness we need. It's all the advocacy we do, all the people we share with, all our daily advocacy work. The retraction letter, the CT attorney general's work, and more to come.
Keep posting your ideas here...
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
You spoke my heart tothepoorhouse.
I am happy with the results so far, but we need to become a lot stronger and spread our rallies all over the country.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
We could protest in front of the IDSA headquarters in Alexandria, VA and then shuttle to the capitol to the senate and congressional offices. There are so many Marylanders and Virginians who have lyme; I am sure we could all board out of staters.
I, too, thank everyone who protested outside of the medical center for me and my family.
Much appreciation for your activism!
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I'm ready for that next step "poorhouse". I agree that we need people there in wheelchairs.
Of course, I'm grateful for those who rallied their tired, hurting bodies for that arduous day. That would be difficult for a healthy person. I know my daughter would crash after a day you all had.
It got some attention. The calls poured into the center. They feel the warmth.
Now...let's put on the heat.
I would recommend taking this to activism, but I don't know if as many people go there.
posted
I am with you TTPH! I am so grateful to those to went to NY. I couldn't make it.
I was just talking to someone today about how each state has one or more organizations fighting for the lyme and TBI cause...if only we could all band together in one place at once...it would be incredible.
Yes, I am with you - we need to march on Washington. It is the Capitol. The Press wouldn't miss us - we would be seen at a National level.
Set a date TTPH...
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
| IP: Logged |
i agree that the smiles in pics don't send the right message for press.
the press publishing pics so far (in the news) have captured the pics that depict the outrage and the most compelling signs, which is good.
i agree this was not to be a 'nice' rally, and i think people responded to that and pulled it off.
i agree that we should decend on Washington.
however, i stongly believe that this thread is not recognizing the important of the timing of this protest and the specific issue it is responding to..the guidelines. this was a critical protest, and if we had not had it, there would be no chance of getting to Washington. if we do not keep THIS ball in the air (against the guidelines right NOW) - we will never get to Wachington.
BUT, if we keep the ball in the air and get the guidelines EXPOSED, we may not HAVE to go to Washington (or at least not go with the threat of loosing all available care over our heads)
the protest took place when it had to take place. no time for far ahead planning, because it had to be done shortly after the guidelines were released, and in the aftermath of the northeast media buzz on Blumenthol's investigation into the IDSA.
it had to happen now, and it had to happen big.
it was big. a busload of people from maryland, various folks from 17 states, including our own yvonne who came from Washington State!
it was big because this board got a real taste of the sights and sounds of the collective outrage, and what it is like to act on it.
it was big because we had Pat Smith and Doc B, now backed by a team of legislators all as hopping mad as we are over this.
it is big because the news is interested.
it was critical, because if we do not do this NOW, we will have no chance to march on Washington.
people need to get this -- we cannot afford plans that go well into the future, because OUR FUTURE IS ON THE LINE.
we are in crisis now.
the way for you to take action would be to support the calls for action put out, as some 350 people did yesterday. (plus those who called the Medical Center)
and beyond that, maybe you can use the articles and the photos and get YOUR paper to run it, since PA was represented at the rally, Blumenthol's investigation is unprecidented, and this is a national issue.
it is not easy getting people who are sick to come to a protest.
we need to all rise up and start with what has occurred over the past couple of months and do the best we can to work together to keep it going and make it grow.
there are people working tirelessly in activism for all of us. Doctors, legislators, the LDA and it's sister groups -- there is a good and powerful team behind the scenes.
support them - they are working for you.
take the steps laid out NOW, and watch for more.
the protest was a huge success.
dropping the ball and judging it serves noone here.
on the other hand, DISCREDITING THE IDSA WOULD PROTECT US ALL.
THAT is what this protest was about, and all here should be getting the references/resources/articles to your media to turn up the heat.
maybe i will see if a list of resources to send media can be placed in the activism section.
mo
[ 02. December 2006, 01:31 AM: Message edited by: Mo ]
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
I agree -- more advance notice is needed -- 2 or 3 months for a protest instead of less than 30 days. In my opinion the attendance would have been at least doubled with more notice.
It is fine to say that the LDA is planning everything and not to take other action, but when we are left completely in the dark as to what the strategy and future plans are it is hard to get involved. Not everyone can drop everything on short notice.
I greatly appreciate everyone who did attend the rally and all the hard work involved.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
the guidleines came out now, Blumenthols investigation is now - and the press is interested, Doc J's hearing is now - we had to face off with the guidelines now.
there are some critical actions where the timing in defence cannot be controled.
these Guidelines and loosing access to abx is one of them.
we won't get anywhere else if exposing the guidelines immediately is not accomplished.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Sieber...you said it well. From what I was told, that to give more information than we received would've given trolls information to sabotage the protest. So, the consequence of that is many were left out due to short notice.
We need to have a better network of regulars who get information. How do we do that? How do you screen everyone to make sure they are not a spy from the IDSA?
Cobweb, we absolutely no way minimize the efforts of what happened yesterday. We are proud of all in attendance. Those who couldn't come weren't any less important, either.
Those who couldn't be there had a job to do. Were you aware that we were peppering their presidents with phone calls while you were outside? It was a last minute, but well planned request, and many stepped up to that plate.
Tothepoorhouse was just saying that it may be soon to become nationally, not just regionally, visible.
We contacted all newspapers in AZ. There has been little or no response. They weren't interested in a group of people standing in NY.
We don't want the efforts of those who had the means to be there to be wasted, let's build on it.
Then, again, we can't make a move without permission from the higher ups, right? So, these are just suggestions, only. No one is going to plan anything without the consent of those in charge.
So, at this point, all we can do is "talk" Please don't think because we weren't there, we are lazy or noncommital. I can speak for myself for the action that I've taken to get the petitions signed, and letters sent to the media.
Also, to repeat. WE APPRECIATE YOU.
Let's not divide on this. We're just trying to figure out a way to be included. That's not a bad thing.
we need everybody included and there are many things that can and have been done, as you say -- also, i am not aware of any restrictions on keeping this ball in the air - meaning, definately work to get the word out in your area!
i totally agree, divided we fall!
Blumenthol's action (the LDA press release), stricker's and cameron's letters and publications and others re: these guidelines and anything your local support group might put together would be of interest in Arizona. also, the petition is national.
if they mentioned the rally at all, it could be noted that there were people there from 17 states
and that the location was chosen because the chair of the guideline panel and two other authors work there.
the guidelines themselves have national impact.
there are enough references, resources already put out that you could use.
mo
(ps: i'm not at all saying everyone across the country should have been in NY, i am saying i believe there should be more recognition than this thread topic post conveys, tho i also think inthepoorhouse has important points that need to be considered - i still think more recognition of the critical timing and effect of this rally and follow-up is needed as it is addressing a crisis that effects all of us right now: these guidelines - these guidelines are fallible. they are a golden chance to fight back if we all work together)
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
bettyg
Unregistered
posted
poor, I'm with MO on editing your topic title to something like:
I'm mad, let's PROTEST WASH. DC! SOMETHING of YOUR choice that gets the point across better.
Kelly, I have sent our local & state newspaper the Conn. and IDSA guidelines, and they will not repond saying they will not publish.
But Ames editor stated this week has been SLOW and they want news, which I furnished him! I'll sound off to him tomorow
posted
And I think constant educating wherever we are is all-important. People here in the SF bay area don't even know about Lyme yet, and they're getting bitten.
I think we also have to build a critical mass of awareness about this plague. I spent yesterday making a half-page info sheet about Lyme/co-infections and also made plague alert wallet-sized slips to give to people. I'll make a general post about this.
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
HMMMMMMM good idea about the threat of bringing ticks into the offices.
We once did this at our county's office's health department.
Funny how when the question can up about allowing us to place some ticks in your office all day while you sit in it (because you don't believe) - the tune changed somewhat - and they started to at least offer free testing on ticks.
Kinda like a challenge ya know....ok if you don't FEAR this illness and or think it can do what it does - then lets see you hold - play - ahhh maybe live with some ticks in your office for a couple of days - let them eat you - suck you or what ever and then lets see what happens - eh? Shall we talk maybe in 5 yrs after this date and see how you feel without being treated?........
It's unreal just how much this WAR continues - it's been so long and yet so little progress.
Posts: 374 | From NJ | Registered: Aug 2006
| IP: Logged |
MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
Areneli said We can also synchronize protests at several places at the same time. I think this may be the way to go next time. And then there will have to be something else too. No one event will do it as I've been involved in this fight since Jan. of '02.
A rally in Washington wouldn't help much. We couldn't get a big enough crowd. Too much Captal Hill competition. Unless it is the Million Lymie March we would get no nationl airtime.
Mo - I saw you at the Rally. You did a great job of firing up the troops. I'm very proud of you.
Acorn
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
| IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I don't think we should compare anthrax in the mail to any type of activism, not a good thing to associate ourselves with for sure. I think that must have been a sick individual or 'terrorist', but not activism.
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
posted
While I generally agree with Acorn that it's tough to get coverage for marches on the Capitol unless you number in the hundreds of thousands, look at the Washington Post's coverage of 22 AIDS activists who protested in front of the White House yesterday.
posted
Oops .. just saw Cave already posted this article.
Posts: 164 | From USA | Registered: Jul 2005
| IP: Logged |
MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
Leslie - It is an Article from the Washington Post. It got local coverage just like our rally did in Westchester.
But if we went with Areneli's idea we would get national coverage. We would get local coverage in a variety of different markets. And with a coordinated effort I think this is easily doable and more people could participate.
AIDS also has a sentimental pull with the public no other disease can come close to. Yesterday was World's AIDS Day also.
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Just a few comments to add:
1. We aren't done with THIS protest yet. If it isn't in the paper where YOU live.. make sure it gets there. They want a LOCAL tie to the NY protest.. so if you didn't GO.. then you can't expect YOUR paper to do anything about it. Even if you DO go.. unless it is arranged in advance.. it won't do you any good unless you have a good working relationship with your local tv and newspapers already established.
2. Contact your state and federal reps and TELL them what YOU want... over and over again. Without that.. when the BIG stuff comes up... they won't think there is a problem in YOUR state... and they won't think twice about it.. much less be PRO-active to help you.
3. If you want to march here and march there.. FIRST... you need to:
A. Have a CONCRETE goal. Not just "I want to get attention for Lyme".. cause that doesn't get their attention.
B. Know WHY would you march on DC? What is it you think will happen there that can't happen else where? What is it you want to say there? The IDSA needs fixing? They probably don't even know what the IDSA is? So before marching... you need to make complaints.. LOTS of them... and let them know what is going on. Educate them to the situation. It's called "ground work".
C. You need to know after many marches in the past.. and rallies.. and LOTS of hard work... we HAVE made progress. When I started this stuff.. NO ONE basically even knew what Lyme was.. much less what a LLMD was (there weren't any).. or IDSA.. or guidelines.. etc. No states had legislation. Back when.. they thought Lyme was caused by a virus and NO antibiotics were needed. It has taken YEARS of dragging the Bumsteere group around by a rope.. like a stubborn old mule.. to get ANYTHING!
D. The Lyme community is NOT good at gathering for protests and rallies. NEVER has been... so don't fool yourself. EXAMPLE- We had a nation wide request.. and many states weren't even represented at the protest. And phooey on the statement.. "they didn't give us enough time". Over 300 people had the exact same amount of time as the rest of the country. And if anyone needs more than 5 weeks to get it together to attend... then they might want to march on down to the post office instead and buy a stamp for a letter they wrote to their representatives.
E. To co-ordinate many protests.. or even a few at the same time, you will need MONEY.. a good amount... my guess it thousands for each event. You will need LOTS of .. no, actually HUGE amounts of DEPENDABLE volunteers who are healthy enough to start the project and carry it through. You will need a GOAL. You will need LOTS of media. Then you will need LOTS of follow-up activity.
F. And THIS is important... TIMING!!!!
G. You need the element of surprise so they don't block your permit.
Not to be argumentative, but many people need more than 5 weeks notice to attend a rally or protest because of financial reasons. People on fixed incomes with ongoing medical expenses need time to juggle limited resources.
Doc appointments are often scheduled 2 or 3 months in advance and rescheduling to make a trip serve 2 purposes takes time.
Yes, I know you can't please all of the people all of the time and sometimes you can't please any of the people any of the time. I just feel like the planners need to figure out some way to give more advance notice of events in the future so more people can be involved.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
bea, for what it's worth, i agree with you.
five weeks just isn't enough time for a lot of folks.. and really big protests, ones that get lots of attention and press coverage, etc, are usually planned MONTHS in advance.
also, as i mentioned in cave's post, i'm more than willing to get arrested. i've done so before for causes i believe in, and i'd do it again for lyme rights, no question.
I agree that we need to act now. And I too am ready to be hand cuffed for my big mouth!
We've got to get good and mad. The kind of mad that we are just not going to take this anymore!
It's time to call a spade a spade.
Lyme disease is a lie. This goverment lies to the public, lies to the mds, lies about the testing, lies about the epidemic, lies about the treatment, lies about duration of this disease. They are lyers flat out and simple!
Why? Because they're hiding something. They want us to go away and shut up.
Well, its time to get good and mad and by God, let us be heard!
There would be alot more public support if people just simply knew what was going on. The truth is, most people simply think that lyme causes sore joints and is cured within a few months with doxycycline.
The truth needs to get out, on the news, in every paper across the country. But how?
I honestly think that getting more personal stories in the media would be the best start.
People need to see a face, hear a personal story, understand the suffering of this disease, understand that it's in their backyards (a kid at our school, a guy in our town, a mother of four that lives on our road).
People do care, they just dont understand. We could have a huge movement if they did.
Doing everything we can in our own communities while we wait on the LDA for the big plans, in my opinion, is very important.
Then when they see something or hear something about the IDSA guidlines, their gonna be mad that the guy down the road cant get treated or get his medicine.
What can they do to help? What if it was them?
We all need to get our stories out there. Whether its putting a sign in your yard, writting letters, talking to your neighbors at the local diner,
talking to people that work at your local news paper, calling radio talk shows, getting arrested at your duck's office or on the white house steps.
Whatever it takes to get this a constant, visible, talked about disease.
The AIDS movement welcomed everyone, told everyone, they showed their faces, their sickness, it won the country's simpathy & then things got done.
People found out babies were being born with AIDS, people need to know babies are born with lyme too!
It's a complete waste of our efforts to keep writting letters and complaining about how unfair all this is, to the people that are already against us.
We need help in numbers to make changes.
I'm going to make a list of all the things I can think of to get more people to understand lyme disease.
I wonder how many new people I can get to care by the end of this week? by Christmas?
Speaking of Christmas, what about Green Santa?
This is the most wonderful, warm idea for children of lyme and their families I've ever heard. I cried when I read about it. Julie & her elves should be in the media for this!
People would open their eyes to the fact that even children have lyme, and their families are broke from paying out of pocket, because of the goverment.
What if Green Santa went national?
We need to come up with ideas to get attention, as many as we can, and follow through. Keeping our mouths shut will do nothing.
Now I'm not gonna proof read this, or I'll chicken out about posting it.
I'm just gonna post it, LOL ~Ma
Posts: 70 | From Central NY | Registered: Sep 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Friend got shot this evening.. but is mostly ok now. Hunting accident. Anyhow...
Bea.. I agree with you. Some folks will need more time to gather financial help.. and if that is possible.. and when it HAS been possible.. that has been done.... however.. we also MUST remember we have to strike when the iron is HOT! NOT just when it is convieient and when folks can "get-a-round-to-it." Not meaning to sound cranky... just stating fact.
PLEASE everyone.. stop and think of the BIG picture here.. NOT individual likes and dislikes and your own personal needs. We MUST focus on the larger goal, work together, and act when the time is right. The GOAL is what MUST be accomplished!
We MUST do some dancing around to be able to work this out type of thing out and make it successful... like it or not. I didn't like the timing.. nor the place (rather be in sunny Florida).. and I certainly didn't need yet ANOTHER hard trip after all of the ones I've been on this year (as have many others)... but we all MUST make sacrifices if we hope to accomplish our goals.
Protesting is ONLY that, protesting.. unless you accomplish your goals. And to do that you must FIRST have some. We did. And thankfully they were achieved. They were a part of a bigger picture. Now we can move on to the next step.
Had we waited longer to have the protest.. it would be mid-winter... and in the middle of the Christmas holidays.. and folks would have less travel money.. less time.. etc. etc. Heck.. had we waited ONE more day many couldn't have come due to the bad weather.
So Bea.. and others.. I DO understand that folks would like it to be more suited to them.. and I REALLY wish it could be... but that is like asking the space shuttle to hold up on their launch because someone has to pick their kids up from soccer and they won't be home to watch it on TV when NASA plans to go for it.
Now..
I would like to make a comment here.. off topic.
Someone said... in an effort to draw attention to our cause...
"What if Green Santa went national?"
I shuttered at that one.. sorry.
If I may be so bold... A number of years ago I was the one who came up with the idea of sharing with families who needed a little boost to help out so our children here would be taken care of. It was simply to help our LymeNet family over the holidays when things are most stressed and stretched.
Barb (our original Green Santa for several years) lovingly took on this project when I needed help (I'm NOT organized as she is and would have botched it for sure)... and bless her heart, she did a WONDERFUL job with it. MANY of our children got some much needed help and smiles.. and many of our givers were able to get in the holiday spirit and feel the warmth and love of giving just to be giving.
This project was NEVER intended to be used as an advertisment or advancement for a politcal cause... NEVER. And if I may take the liberty to say so.. I hope it NEVER will be allowed to. This is a personal effort between close friends and what I consider to be family here.
Please.. for the love of the children.. and for the love of the holidays.. do NOT use it or exploit it for any other purposes. Can we just do this quietly and with grace and caring.. as it was originally intended to be done?
posted
I really didnt mean the lymenet Green Santa go national...
Pretty much meant "A" national Green Santa program simalar to the ones for;AIDS,Cancer,Lukemia ect...
Even media about positive things, is media... that's what I was thinking, brainstorming for ideas.
Posts: 70 | From Central NY | Registered: Sep 2006
| IP: Logged |
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I will bring it up again. We need a PR company and have to find money to pay for it: sell cookies door to door or whatever.
Good PR would multiply results on our efforts by several times.
Perhaps instead of just a few articles on the rally we could have hit 40.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
While waiting in suspense...
How about everyone contacting your state and federal representatives and making a stink about the Lyme situation.. nicely. Unless THEY know you have a problem with Lyme.. nothing will get done! See Action alerts asking for this to happen and telling how to do it.
And we can be getting more signatures for the petition. If you already got 500.. get 500 more! We want 50,000. We are about 32,000 short still.
And how about shaking up the media in YOUR area by EVERYONE contacting them to tell them you WANT to hear more about Lyme? This protest isn't over! There are still stories coming out... and there will be more. BUT.. we need YOU to put the local spin on it from YOUR home towns.
Dr. J in CT and in NC could use help. Have you been to the hearings? Everyone has had months of notice to be able to plan to go.
I am in the process right now of doing 5 articles.. writing some.. and helping others write some. I can't keep up with the requests I'm getting and could sure use help!
Also.. VERY important..
Respond to the articles that ARE published. VERY important! We need to keep THOSE lines open! I wrote two tonight between other things going on. They don't have to be fancy.. just a simple thanks and good job!
Please don't expect those who have run themselves in the ground getting all of this done so far.. and for years now... to continue to push, push, push all by themselves. They are VERY tired.. and have given many years to the effort... going 100 miles an hour.. and need YOU ALL to help out now. To make the plans work.... YOU need to follow through.
And please... let's all...
TRY to WORK TOGETHER rather than "venture off on your own". You need to consider where YOU will get help for all these BIG plans you think need to be done. No offense to anyone.. but I have seriously considered having the word "NO" tatooed on either my forehead (or my behind- to be used whenever the mood strikes). I was getting between 120 and 180 emails a day for the past few weeks.. along with multiple calls, etc.. and am PLUM TUCKERED OUT! I can't be spread any thinnner.
About those folks who have been pushing so hard behind the scenes.. I want you to know what's going on with them. I've had ONE email from the bunch of them since getting home from the protest... after tons of them being exchanged prior to the protest. We are all crashing.. and tired.. and following up on what needs doing.
It's YOUR turn to make a difference. You CAN do it. Don't sit around and wait for others to hand you a done deal. Do the things that have been asked already... as they are VITAL! THAT is what you can do.
And in the mean time... let some of us take a MUCH needed break and finish up all the loose ends and details on what we've been doing so far.
Folks may even want to look back into the history of activism for Lyme... and the history of Lyme, period. I think many folks need to see what has worked and what hasn't... and come up with some constructive suggestions of things to do BEFORE the next plan comes to be. Be part of it by laying the ground work and sticking to the goals.
Thanks!
And when was the last time anyone wrote a letter to the Editor of their local paper? Ain't it about time? Or a simple thank you note to your LLMD? Or did a fundraiser to donate money to the LDA or Dr. Jones kids?
posted
i'm glad this protest has garnered interest among members to get active.
TC has an important point, we already have actions we all need to be taking NOW.
the petition for one. we gotta reach 50.000, and this one is easy to do immediately if we each push.
local media coverage of the protest: i understand we may have assistance via a press packet to post soon. look for it to be posted, work and viable references are being compiled to assist you, and USE it.
this protest is NOT old news!! some of those fellow Lyme sufferers who busted their a$$es to be there might feel deflated hearing that remark.. besides - IT'S NOT TRUE!! for goodness sake, fan the flames of what just occurred before casting it away.
you say we need to get radical, well - get radical and build on this movement. one thing no one can deny, strength is in numbers. folks should think about that before going 'renegade'. we do have the advantage of numbers of we work TOGETHER. you have the opportunity, i don't understand the critical pause.
do you realize how much it takeds to get 350 plus ill people (or people struggling with ill children) to go to a protest?
each came because they had it in their hearts to represent 1000 others each.
they have stood for you and passed the batton. run with it. they are hoping you will.
please watch for tools to get media in your states to publish the core isues that raised the protest - the GUIDELINES, and their bogus nature - and what it means to have a disease denied.
after all, if it can happen with Lyme, what disease is next?
this is a health and welfare issue, it's about holding authorities accountable.
get the word out in your papers and with your legislators.
that is called groundwork.
i agree with the sentiment of this thread, but also see that the work is already here for all to do to reach the end you are calling for. you have the tools with which to dig in.
the tools were fashioned by others who had/have the same concerns you do, and went and set out to dig in and get their hands dirty starting years ago and working still AS A TEAM.
we wouldn't have the luxury of this discussion if that had not happened. now it's our turn to lend a hand.
Bea, i understand the need for notice. we did not have that luxury. the guidelines must be challanged TODAY, not tomorrow, and certainly not three months from now.
hopefully, more protests can be planned in more advance.
however, many are saying we need to be MORE radical. as radicals, you need to be ready and willing to act now in any capacity you are capable.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
posted
One idea: we could print out anything from here, like a few good pictures from the rally -- this little girl is precious, make copies and post them around town, with our own comments on the page about the recent rally for Lyme needs, the petition websites, etc. People see pictures.
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Another idea, altho I don't know if I'm going to be able to get very far with it: I have noticed that the city and county of San Francisco dept of public health has literature in public places on west nile virus(brochure) and getting tested for syphilis(flyer).
I could go in to their office and make the case that they've got advocacy for those diseases, including syphilis, which is also caused by a spirochete bacteria -- so where's the Lyme brochure, education, testing and treatment? And of course hand them a copy of the materials I have at this point.
I really would like them to do the public health service they're supposed to do. I would like to see them make free testing and treatment available to everyone who needs it.
Enough of the way we're being treated. We have a right to healthcare. As a person with Lyme, I cannot afford an llmd because my insurance is not accepted. When have I EVER had an illness I could not get treatment for? This is an appalling situation. We are sick. We deserve care!!!
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
bettyg
Unregistered
posted
Thanks Tincup for your continued guidance.
I've got 62 more names to enter into LYNNE'S petition; LDAs I entered today.
I do have 3-4 newspapers to write to thanking them for coverage of good articles.
I will be ordering 1 batch of HEALTH ALERT NEWSLETTERS and distributing to the below I have shown!
Then Tincup, I'm all yours; what can I do to HELP YOU DEAR ONE? *****************
Attention: we got our orders/requested nicely by Tinny.
* Write to EACH of the newspaper writers!
* get more signatures at FAMILY/FRIEND GATHERINGS, weddings, church, NURSING HOMES, etc.
* Betty's idea ... ordering the HEALTH ALERT NEWSLETTERS, and send or hand deliver them to your LOCAL NEWSPAPERS WHO WOULD NOT PUBLISH WHAT I SENT THEM BY EMAIL!
* more on newsletters above, see below I posted on each of the normal 4 forums!
Mike had great ideas where to SEND these to:
* our local legislators, * our FEDERAL senators/reps, * YOUR GOVERNOR, * YOUR ATTORNEY GENERAL fyi only; * MD offices you frequent, * YOUR BLOOD LAB AREAS!, * X-RAY AREAS; * HOSPITAL BLOOD LAB AND ER area; * for family members in disbelief; Christmas would be great time to give them their copy!,
* have extra for those you learn of locally seeking lyme testing/treatment.
* AND your LOCAL NEWSPAPER WHO WILL NOT PUBLISH ANY LYME ARTICLES YOU HAVE SENT THEM like my Ames and Des Moines, Iowa papers: my getting lyme from a tick off a live xmas tree, and the new IDSA rules/Conn. AG filing antitrust suit against IDSA!
Rub it in their faces says me, Bettyg! ***************************************
IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
OK, I just emailed the reporter for one of our local papers. I happen to know her, so I hope that will help in getting the story in that paper!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
One more idea: nationwide fundraising for Lyme research in connection with information campaign with door to door canvassing collecting money for research (we need badly more American research on Lyme disease). There are other successful organizations that operate that way. Canvassers may be recruited within communities from healthy volunteers.
Good way to propagate Lyme disease and collect money for research at the same time.
Big part of the problem is that European research, no matter how good it is, means nothing in America. In other way we need also a scientific committee that would give away scientific grants.
[ 03. December 2006, 07:12 PM: Message edited by: Areneli ]
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
posted
so true but it brings me back to these guidelines.
they have no credible research base. they have no credible research-base. 5% is not credible. odds are well stacked that they don't even use 5%, as their references are references to only a few references.
this is huge, but these big-wigs never get challanged. their work is accepted readily without question - like the college student who sleeps with professors.
we NEED to support those who are challanging them.
all we need to do is instist this point is exposed and challanged - and bingo.
chronic Lyme exists.
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
posted
In all honesty, I find these "friendly discussions" so very discouraging...
Posts: 393 | From Washington, DC | Registered: Jun 2005
| IP: Logged |
i would think their disclaimer means little as the impact is considerable -- isurers, HMO Docs and other institutions are bound to or creating guidelines based on the IDSA guidelines...
they are essentially practicing medicine without seeing the patient(s).. and causing massive harm due to their authoritative position, and the liberties, restrictions, and gross misrepresentations much of the rest of the paper takes.
i don't see how they can get away with the same sort of 'individual results may vary' disclaimer as is put on a bottle of herbs or eye cream.
in addition to this - panel members work as insurance review Docs.
LL Docs are reported to medical boards for not following the guidelines.
hopefully the investigations will uncover all of these conflicts of interest and abuse of power.
Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
posted
i have faith investigation will uncover the IDSA has committed - at worst - criminal negligence with intent, motive/benefit - at best, GROSS MEDICAL NEGLECT and sheer incompetance.
they won't roll over, that's true - but i also don't think Blumenthol would take this unprescidented (and somewhat high profile) move if it there was not a clear path to pursue.
if they won't roll over, i'm sure there are enough of us here willing to give them a little shove
(oh, excuse me Dr. Worm! i didn't see you standing there)
mo Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Tothepoorhouse said..
"Tincup, as you seem to be in the know about plans before we do.....can you let us know what next steps are?"
posted
I think (and this is just my opinion) that a march on Washington would need AT LEAST one year to plan for. WE COULD ALL PLAN ONE YEAR IN ADVANCE TO GO!!!....SOMEONE set a DATE!!! What is the rush GIVE TIME for EVERYONE to be INVOLVED!!!
SOmetimes it take smuch longer than a month to plan a trip! Especiallly if you are really busy....
daniella
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
| IP: Logged |
Cobweb
Unregistered
posted
[QUOTE]Originally posted by cave76: [QB] The IDSA (and their lawyers) neatly excused themselves from liability with the following; at least from anything except a long, expensive lawsuit.
It is important to realize that guidelines cannot always account for individual variation among patients.
They are not intended to supplant physician judgment with respect to particular patients or special clinical situations.
IDSA considers adherence to the guidelines listed below to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient's individual circumstances."
So why can't LLMD's use this same claim in their defense-the IDSA has given them permission to treat according to individual circumstances.
Can't the IDSA's own disclaimer be used against them in defense of LLMD's because they recognize the " ultimate determination regarding application " rests with the physician?
Doesn't this excuse the LLMD's from liability too?
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!
![[Smile]](smile.gif)
![[cussing]](graemlins/cussing.gif)
![[shake]](graemlins/shake.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Big Grin]](biggrin.gif)
![[Razz]](tongue.gif)
Printer-friendly view of this topic