Topic: Back from the Protest in Atlantic City- WOOHOO!!!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
As many folks are waiting to hear news.. I will go ahead and try to share below a very disorganized list of what I remember and know from being there.
I'm sorry to do it this way.. but I just arrived home and I am exhausted, need a bath, a meal and some REAL sleep.
Personal accounts and observations...
My two hour and 46 minute trip (thank you very much Google Maps) actually took 4 1/2 hours .. during one of the hottest days I can remember... and I just came back from summer time in Florida!
I was stuck in traffic and road construction with an overheating truck with no air conditioning and a truck battery that kept going dead.. which only added to the excitment.
The trip left me totally overwhelmed and discombobbled by the time I got there.. but I made it.
AND SO DID about 25 OTHERS!!! MORE than we had hoped for!!! Bless their hearts. We had folks from at least 6 different states.. maybe more but that is what I counted.. and it was soooooo nice to see them all!
The protest signs that were made up in advance were VERY professional looking... great job!! Good slogans!
The weather was VERY hot.. but the breeze just about blew us away at points... so it wasn't as awful as expected (no one dropped from heat stroke anyhow). We had enough folks there to be able to take breaks, eat, get drinks, etc.. so that was PERFECT! And because we all were scattered across a large area.. it didn't look like a "mob". It looked VERY professional and well organized.
The group of Lyme folks that came to support the protest were VERY educated and made a big statement for our cause. They approached folks entering and leaving the conference and nearly everyone stopped to listen and take literature that had been prepared in advance.
One lady and gentleman from PA were non-stop walking up and down with signs and LOTS of passerbys got educated with their efforts.
Even the train people exiting the station and the bus drivers and taxi cab drivers all around spoke with our group members and were educated by the event... and were anxious to share their Lyme stories with us.
It was nice how the group set this up for us because we were able to talk one on one with important people who make policy from MANY states.. and most of them I spoke to were from areas considered non-endemic.
Only one I spoke with was a text book case of health department misinformation.. but two of us spoke with that one person and I am SURE they will be thinking in a different light from now on.
Most of the CSTE members were very polite and were actually very interested in what we were saying. Many asked questions and shared information with us to help us! I was pleasently surprised by that and grateful that they cared.
That's VERY encouraging!
Flipping the coin...
It was surprising to me and others to hear the professionals in charge of our "disease" saying there wasn't any Lyme in THEIR state... or it wasn't a concern for them. They honestly believed it too!
For example.. Hello Florida!!! Head's up! You need to contact the epidemiologists there and let them know there IS a problem. They don't believe Lyme is in their state... and we have thousands of cases there. They also have convinced much of the public there isn't a problem in Florida.. and the Congress reps there.. and the doctors.. as we all know.
Anyhow..
There were reporters from the media there early in the day.. and ..
WE MADE FRONT PAGE NEWS TODAY!!! WITH PICTURES!
I heard there was a story but I had already left Atlantic City when I found out.. however... a lady I met on the way home mentioned she saw an article on the front page of the Atlantic City paper about Lyme and I offered to buy it from her IF she still had it so I could see it... but she was sweet enough to give it to me! I'll post the link below.
I also stopped in Delaware and heard at a fast food place that a radio station was talking about it today too!
I am still hearing from others and trying to get more details for you all... which I will share later as I am able.
In the meantime a bologna sandwich is calling me to the kitchen... and Brain Roberts (that's my boy) just hit a home run against the Yankees. Back later with more..
posted
AWESOME Tincup....the link the link, where's the link??
-------------------- "don't ever write anyone off, you'll never know who or what they will become" Posts: 115 | From la la land | Registered: Apr 2007
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Thanks for the update and thank you and everyone who went for being there to educate others and represent us! Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
OOPS! I DID forget the link.. didn't I? SORRY!
Atlantic City Lyme conference draws pickets By THOMAS DUNFORD For The Press, (609) 272-7147 Published: Thursday, June 28, 2007 ATLANTIC CITY -- Pickets gathered outside the city's Convention Center on Wednesday to protest a new procedure for Lyme disease detection they say would make it more difficult for doctors to diagnose the disease. Dressed in bright green T-shirts with fake ``bull's eye'' rashes painted on their arms, about a dozen protesters from the Lyme Rights advocacy group handed out leaflets decrying a recently re-leased draft of the ``Revised National Surveillance Case Definition for Lyme Disease.''
The new definition is proposed by the Council of State and Territorial Epidemiologists, or CSTE, which is holding a conference at the convention center. The CSTE advises the Centers for Disease Control and Prevention.
``If this goes through, these patient won't be able to get diagnosed and they won't be able to get treated as a result,'' said Patricia Smith, president of the National Lyme Disease Association and member of the CSTE. She protested with Lyme Rights.
Under the new definition, doctors in states where Lyme disease has not been classified as an endemic would be required to provide additional information, such as a positive laboratory test, before confirming a case of Lyme disease. Currently, an erythema migrans, or ``bull's eye'' rash, is all the evidence a doctor needs to diagnose the disease.
To classify a state as having a Lyme disease endemic, doctors must prove that at least two people have contracted the disease. In 2005, there were no confirmed cases in Oklahoma, Arkansas, Mississippi, Hawaii, Colorado and Montana. ``The rash has always been good enough for them. And now, with no good science to back it up, they're going and changing that,'' said Ellen Lubarsky, of New York. Lubarsky says she contracted Lyme disease 17 years ago but that it took 15 years for it to be diagnosed properly.
Patrick McConnon, executive director of the CSTE, said he did not see what there was to protest.
``I don't think it will make it more difficult for patients to get diagnosed,'' McConnon said. ``What we think this will do is give us more refined tools for disease surveillance. We believe the most accurate information, the most precise information, will help us deal with policymakers on the state and national level. Our motivation and our interest is to do our job with the best information.''
But Lyme Rights members questioned the precision of current laboratory tests.
``The tests they have aren't good enough. They're only 40 to 60 percent accurate at best. And now, patients will be at their mercy before they can get treatment,'' Smith said.
The protesters said they were also concerned that stricter criteria for Lyme disease detection could result in a drop in apparent case numbers, which likely would lead to reduced funding for Lyme disease research.
``The government spent $33 million on Lyme disease research last year. They spent $78 million on West Nile. Meanwhile, there were eight times more reported Lyme disease cases than West Nile. There's a huge disparity there,'' Smith said.
``It's easy to understand the concern of these people,'' McConnon said. ``This is an emotional issue. This is not just about statistics. But we believe that to overcount, to count without the precision of diagnostic data, would not be to anyone's advantage.''
Lyme disease is spread by the bite of infected ticks and can attack the joints, the heart and the nervous system, causing crippling pain. Other symptoms include fever, headache and fatigue.
``I was bedridden for about five years,'' said Kim Uffleman, a motel owner and radiology technician from Wildwood Crest. ``I remember one day I looked at the shoes in my closet and I nearly cried because I couldn't tell where they came from. I couldn't remember whether I bought them or where I got them from. I was only 30 years old.''
Several children joined their parents in protesting.
``I have three sons. I just want my boys to be healthy,'' Uffleman said as she looked at some of the children holding pickets. ``And now this group wants to make that harder. I think it's criminal, what they're doing.''
The protest lasted five hours, from 12:30 p.m. to 5:30 p.m. CSTE conference events are scheduled to continue today from 8 a.m. to noon, during which members will vote on whether or not to endorse the case definition for future submission to the Centers for Disease Control and Prevention.
posted
^%$e&*%^%#$@#@!$#$#!!@# REALLY WANTED TO GO !!!!
Posts: 983 | From The sky | Registered: Feb 2005
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Before I hit the tub.. I thought I would share a few more notes.
The article said.. ``It's easy to understand the concern of these people,'' McConnon said. ``This is an emotional issue."
YEP! I expected that. Didn't we all. Weird he didn't just say the standard IDSA line about us all being "nuts"... but at LEAST it was more of a polite boot in the butt than we normally get when asking the people in charge of PUBLIC HEALTH for help.
To him it seems to be just an ongoing science project that they spell out on paper for a handful of reports that are due here and there.... reports for which he gets a pay check as an end result. Good for him.. and the pay check comes.. right or wrong.
To us it is our lives and our childrens lives... and the future of many others who WILL be infected in the years to come.
Anyhow...
The article.. continuing McConnan's quote said.. "This is not just about statistics. But we believe that to overcount, to count without the precision of diagnostic data, would not be to anyone's advantage.''
BINGO!
THAT one line was the one about "overcount" was one I heard the MOST about all day from the CTSE members who were text book quoting. I was surprised by it too.. but I learned some things about how they think... which may help us?
I kept hearing they REALLY REALLY REALLY don't want to "overcount".
HUH?
I don't understand the urgency and importance of that problem. Right now they are missing 7-12 PEOPLE, actual PEOPLE (not just numbers) for each one case reported.. or more.
And that doesn't seem to ruffle anyone's feathers.... even though it is making Lyme disease a nightmare to many families because of it... is denying us a diagnosis... is denying us insurance coverage ... is denying us treatment... is allowing us to become chronically ill, disabled, or left to die.... etc.
But it sounds like (from what they said to me and others) that the world will come to an end if they were to overcount by a few?
This was mainly focused around the EM rash issue.. with them saying the EM rash is caused by other things.. not just Lyme.
Yeah, I know.. so I asked WHAT other things too. They have been told that the EM rash can be the results of a spider bite! Thank you University of PA, Hopkins and a few others ... hold the MAYO.. etc.. and your idiot misdiagnosing ducks! An EM without a positive test means the TESTS are bad.. NOT that it must have been a freaking spider bite!!! Grrrrrrrrrr... But anyway...
No.. I can't grasp that concept at all.
Sooooooooooooooo.. my answer was to those who spoke of that aspect... the SHORT version...
Best to add a few numbers to the list of numbers perhaps than to miss so many actual PEOPLE .. with the end results being the destruction of a person's health and life.
I mean I can't understand why if there were 4,246 cases reported from one state in a year... what the harm would be to instead to record 4,262 cases (spider bites?)... which is ONLY a handful more of NUMBERS!!!
ESPECIALLY if those extra few NUMBERS were only PAPER WORK errors.
The other way around... the way it is now... those cases being missed are HUMAN errors and real people who are missed.. which can be devestating.
Plus a few extra NUMBERS here and a few extra NUMBERS there... on PAPER ... would NEVER add up to the ones that have been missed over the many years they have been counting (or miscounting) with the current system.
posted
It makes not sense to rely solely on faulty lab tests for their numbers when an EM IS definitive for Lyme!
I agree Tincup. Why in the world are they concentrating on overreporting when it's clearly underreported per the CDC???? I'm completely dumbfounded.
What a complete waste of tax payer money.
-------------------- The best index to a person's character is how he treats people who can't do him any good, and how he treats people who can't fight back. -Abigail van Buren (Pauline Esther Friedman) (1918-2002) Posts: 409 | From Florida | Registered: Dec 2005
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Thanks Tincup
so much for making that very long and sounds like exhausting trip. And double decker thanks for all bringing back such great detail.
Just absolutely astounded how they are stuck on numbers...numbers... numbers..people suffering & dying...numbers, when the tests are so inaccurate.
It's really depressing to me the whole lack of science & a total lack of compassion. Unbelieveable..but thanks for being there & trying to talk some sense to them.
I second cassie's advice to take a bubblie & get lots of rest now
Awesome job!
And thanks a trillion million, but who's really counting Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
posted
I think this might be a butt-covering ploy. If cases can be held in (unreality) check one way or another, it doesn't look like they're promoting the new vaccine. Anyone?
Posts: 422 | From Luck home | Registered: Sep 2005
| IP: Logged |
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Mjo,
Another alternative reason for this attempt:
I think it could be another "fake truth" infiltration ploy.
IDSA writers have joined with the Neurologists, to take the same diagnostic criteria.
Now, they have connected with this new group. Again, it is the same diagnostic criteria.
Then, when IDSA needs to back up their position, all they have to say is "look, group A and group B support the same position".
Sort of like rumors on the internet, where C quotes A who quotes B who quotes C. Round and round they go.
But there reallly is no foundational truth. Just hearsay. (or heresy!)
It is a strategic ploy, in that respect.
Unfortunately, 3 wrongs do not make a right.
And their self-labelled "gold-standard research" is fools gold.
ILADS approach is a platinum approach....pristine in its truthfulness and recognition that there is no current answer/ guaranteed cure for those who have continuing problems.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
| IP: Logged |
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Thanks for posting and going!
"The government spent $33 million on Lyme disease research last year. They spent $78 million on West Nile. Meanwhile, there were eight times more reported Lyme disease cases than West Nile. There's a huge disparity there,'' Smith said.
How does the CDC/NIH justify this type of inaction for the largest vector borne disease in the US??
Posts: 2557 | From home | Registered: Aug 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good morning..
My assumption that all I needed was some food, rest and a bath was wrong. Uggggggggggggggg!
But I wanted to try to note a few more things so I don't "forget".
LymedinVA... Try this address below... as the other one isn't working right due to the increased volume still downloading from when I was offline when traveling.
Cassie... yes.. VERY successful! We made LOTS of progress! I will have more info to share... once it is confirmed... of the happenings inside the meeting. GOOD NEWS!
Oh.. and to win the vote at the last minute.. just so you know.... we never expected to. That was NOT the goal. It would be nice if we did.. but my guess is it would be impossible.
Our goals were all met though.. and more so. GOOD news coming!!! ````````````````````````````````````````````````
Spie said..
"It makes not sense to rely solely on faulty lab tests for their numbers when an EM IS definitive for Lyme!"
EXACTLY!!! You hit the nail on the head!
To purposely reduced the number of cases.. or try to stick them in catagories where they won't be reported or count does NO ONE any good!
And I agree.. a TOTAL waste of tax money!!! If they want to adopt this type of plan.. why not just guess at the numbers.
`````````````````````````````````````````````````
Yo ho 5dana...
You said.. "And thanks a trillion million, but who's really counting."
You make me laugh! HA!
You are right.. this trip was NOT a good one for me and I should NEVER have tried to do it. But every once in a while I have this lapse of memory and for a moment I think that I am "normal" and make plans with that mind set.
Know how crazy I am? I actually planned to drive there, do the protest AND drive HOME that night! A one day trip!
I was totally NOT able to even try to drive home after the long day.. and it is good I didn't due to wicked storms along my trail home, too... but I ended up with no hotel, no plans, etc.
Luckily the Lyme Rights committee members took time to help me get to a hotel room and made sure I was ok BEFORE they all crashed and they even slept through supper they were so worn out! It was a hard day for everyone!!! They were all exhausted.
But they did a fantastic job!!! Thumbs up for all of their hard work!
Anyhow...
I was SURE I never wanted to try to drive in that traffic again (I almost called someone to come get me it was that bad)... so I re-routed myself to take the Ferry Boat into Delaware and rode on it across the bay to get home.
Due to more strong storms predicted I left early.. after I slept in a hard bed for 1/2 hour... about 5 times (very interupted sleep)... and after 6 1/2 hours of driving and riding the big boat I made it home again. About 2 hours after the storms hit!
Anyhow.. I pay today!! MAYBE I can remember all this the next time? I HOPE so!
Ok.. enough whining... I will feel better some day.. I'm sure!
`````````````````````````````````````````````` Yes, tutu.. I agree with you!!! And Robin too!!!
"Maybe they are concerned that if real Lyme numbers were reported They would lose funding for their pet projects."
I think that is one of their concerns. I never considered that angle but after speaking to them personally I am convinced that is part of the problem. I also have seen this same "attitude" in the state department of health.
It is starting to make sense to me and others.
My ONLY problem with YOU is.. why didn't you tell me that before I made that trip? HA! It would have saved me a lot of aggravation!
You certainly have YOUR thinking cap on. Good!!! I missed putting that together!
And thank you to you and others for the kind words. We do this to help folks who can't be there... and any feedback IS appreciated.
posted
The story was picked up on NJ.com (so far) and there is opportunity to post comments! (The links are longish -- make sure it doesn't break into 2 lines when pasting to your browser.)
Also -- opportunity to thank the reporter and photographer from AC Press who covered the story -- here's a shorter link to article and you can click reporter's name at bottom to email him:
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sweet pea..
That name makes me smile. Such pretty flowers! And thanks for the kind words. I WILL try to rest. Not that I have much choice.. I am plum "give-out".
````````````````````````````````````````````````
mjo...
You said.. "I think this might be a butt-covering ploy. If cases can be held in (unreality) check one way or another, it doesn't look like they're promoting the new vaccine. Anyone?"
Good for you! Another BINGO!
My thought (opinion) though is FIRST they will "delight" everyone with the announcement of a new and improved (oh PLEASE give me a break) Lyme test!
They put a "clause" in the CSTE proposal so that a new test can be scooted in easily when the timing is right... yet tests like IGenex can be kept out.
THEN.. after their new test is out on the market.. we should see a jump in Lyme case numbers ... and an advertising campaign saying Lyme is sooooooo bad now, blah blah blah... and then the BIG announcement talking about the release of this "Save-the World" new Lyme vaccine.
In the meantime the new test they develop can be used for studies and trials.... and profits will be rolling in .. along with more research grant money paid to ducks for this "important project".
So the big bucks to the ducks will come from BOTH the new tests they will put on the market .. millions of tests actually .. and the new "parts" of the vaccine and tests that will be utilized in the trials (example- Barbour medium).. which they will have patents on or interests in.
Cha-Ching $$$... Cha-Ching $$$ ..
All the way to the bank they can dance.
After they sell X number of doses of the vaccine.. and if they do it in a hurry.. they can wallow in the profits coming in BEFORE reports are wide spread that there is a problem with the vaccine (if there is).. so millions of $$ can be had quickly.
Then if it is proven to be a bad vaccine.. they are sitting pretty already and have lawyers to counter the law suits that might pop up from injured patients. Then they scatter to new places making it difficult if not impossible for patients to collect damages.
Now remember this is my OPINION only.. NOT facts I have gathered. I only see bits and pieces of reports because many of their projects are kept hush hush... so my opinion above is based on watching the last episode they were involved in with the vaccine and trials... and by following the HISTORY of the last vaccine and the shananigans that went on last time.
But I DO believe you are right mjo!!! Good thinking!
``````````````````````````````````````````````
Northstar..
YES!
You said (talking about IDSA and Neurology Guidelines).. "Then, when IDSA needs to back up their position, all they have to say is "look, group A and group B support the same position"."
EXACTLY!!!
If we dipped into the accounts of both groups in the future.. do you think we will see my above scenerio playing out? I'd bet money on it!
And you are right. Another BAD point is.. they can use the neurology guidelines to help nail our doctors!! Especially when the IDSA is totally discredited and wiped off the planet by the ongoing investigation by the Attorney General... and others.
It is like a "back-up" plan for them. For court procedings... when the IDSA goes down... it is to be used for their own protection. Or it is to TRY to be used.
My thought though is... IF the IDSA plans to OFFICIALLY buddy with Neurology... they have been all along but now they've signed their names to it...
A few rotten apples in THAT new neurolgy set of guidelines group could also take away the rest of the neurologists credibility.
If I were an ID duck or a Neurologist... I would RUN as fast as possible from all of them.
What I see happening is kinda like ...
If one of us were a member of AARP.. we couldn't go around saying ALL of the AARP's members agree with us when we say stuff like 'no one should use a cast for a broken leg.'
That is what is happening here.. of course in MY opinion.
posted
In answer to one of Tincup's statement below - there is plenty going on down in Florida in the Lyme community.
Quote from Tincup,".. Hello Florida!!! Head's up! You need to contact the epidemiologists there and let them know there IS a problem. They don't believe Lyme is in their state... and we have thousands of cases there. They also have convinced much of the public there isn't a problem in Florida.. and the Congress reps there.. and the doctors.. as we all know".
I attended a conference in Florida last year and a top epidemiologist from one of the universities in Florida very openingly stated that there was Lyme in Florida. He did a great presentation backing up his statement. He also was quoted in a recent article on 'Lifelyme' in the Tallahassee Democrat. http://www.tallahassee.com/apps/pbcs.dll/article?AID=2007706040311 LifeLyme Group Warns of Tick Danger in Florida
Several Lifelymer's have met and talked with the Sect'y of Health and legislators on several occasions. Although action was promised about the Lyme ignorance in the state progress is slow to come. However, several active support groups under 'Lifelyme' have been doing excellent educational work in the state working one on one with patients, and physicians. Presently, there are many projects in the making that will get the Lyme community the attention we need to bring about change.
In the last month there have been four newspaper articles on Lyme disease in the state...a considerable increase in awareness. In the last five years there has been progress made. Six years ago physicians would tell a patient, " There is NO lyme in Florida". Patients aren't hearing this mantra as offen as they did six years ago.
Education, patience and professionalism will prove to do more good to change the situation than ranting and outrage. Alex
[ 29. June 2007, 02:55 PM: Message edited by: alexbabet ]
Posts: 24 | From NJ USA | Registered: Nov 2003
| 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)
![[Roll Eyes]](rolleyes.gif)
![[kiss]](graemlins/kissing.gif)
![[Smile]](smile.gif)
![[Cool]](cool.gif)
![[Razz]](tongue.gif)
![[Wink]](wink.gif)
Printer-friendly view of this topic