Topic: MAJOR PROTEST IN VALHALLA, NY - SEE THE WORM SQUIRM - NOV 30
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The Infectious Diseases Society of America
has declared war on patients!
FIGHT BACK!
PATIENTS RIGHTS PROTEST!
Dear Friends,
Chronic Lyme disease has been banished as a disease!
No conventional or alternative treatments are recommended!
Doctors cannot make a clinical diagnosis anymore!
This is a pivotal moment in the history of Lyme disease.
It is time for patients to fight back!
This protest is part of a national agenda to get back control of our treatment and our lives.
Your participation is critical!
Your participation is critical!
Your participation is critical!
Patients are already being denied coverage. Doctors are backing off treating. There is no room for clinical experience with the new guidelines.
This insidious disease is devastating the lives of children, families and our communities, while much of the medical establishment continues to deny the severity of this public health crisis.
The Infectious Disease Society of America has released a new set of reckless guidelines that will IMMEDIATELY impact all of us.
Ruled by a few:
14 IDSA committee members created these new guidelines
14 IDSA committee members and the IDSA board were the only ones to vote & approve guidelines
Patients and treating physicians were denied input into guidelines.
This small group holds our health and lives in their hands.
Guidelines impact:
Diagnosis is no longer clinical but rather only by CDC positive surveillance blood test or EM rash,
Will miss 50% of Lyme cases leading to the potential for severe debilitating chronic disease.
Insurance companies will be empowered to deny coverage.
State medical boards have strong basis to prosecute our doctors.
School districts may utilize guidelines to not address special needs of students with chronic Lyme.
Child protective Agencies may file inappropriate charges in custody cases.
We need to hold the IDSA responsible and accountable and let the world know what they are doing.
New York Medical College/Westchester Medical Center is home to three of the IDSA committee members we will not quietly tolerate them harboring this group.
What you need to do!
Show up ~ Numbers count!
Bring family and friends.
If to far/ill to attend see website (Lymenews.org) to help with other protest efforts.
Print out and distribute attached flyer at your local doctor's offices, grocery stores, libraries etc.
I could not locate the section of the website that tells how we can support from home. What should I click on to find that info?
Thanks, Suzy
Posts: 260 | From Virginia | Registered: Jul 2004
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Somebody wrote not long ago that there is one LLMD who believes that the New Guidelines are so bad because authors were misinformed about true situation of Lyme sufferers.
This can be remedied as Dr Wormser clearly provides his contact info on the Guidelines.
If you write, please don’t forget to ask him for forwarding of your letter to other members of the Lyme IDSA committee that created the Guidelines.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Ok....all together....not only the protest but an investigation opened already..hmmmmmm
"Connecticut State Attorney General Richard Blumenthal for beginning an investigation into the Infectious Diseases Society of America (IDSA) Lyme disease guidelines development process. In an unprecedented move, the Attorney General's office filed a Civil Investigative Demand "
Attacking the "bugs" from different angles....
Posts: 983 | From The sky | Registered: Feb 2005
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posted
I hope I can represent there my "state", no matter how far I have to go or how cold the weather might be..thanks to good LLMDS I can endure many " physical adversities"....
Posts: 983 | From The sky | Registered: Feb 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Happy days are here again
The skys above are clear again
Let us sing a song of cheer again
HAPPY DAYS ARE HERE AGAIN!
``````````````````````````````````````````
May I have this dance?
`````````````````````````````````````````````
Yes.. a one, two, three punch a roo.. right in the nose!
It's about time somebody said enough is enough!
Thanks to all who worked so hard to make this happen!!!
posted
up to the top again
Posts: 8430 | From Not available | Registered: Oct 2000
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Wrote him. Thanked him. Thank God
Posts: 2903 | From AZ | Registered: Feb 2006
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Hey TC save a dance for lymie..See you on the 30th..Let's rock!
Be there or be square. Posts: 2360 | From SE PA | Registered: Mar 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
sorry got carried away with the edit button..
Posts: 2360 | From SE PA | Registered: Mar 2004
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Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
I will so freakin' be there! I'll be the crazy woman yelling out on the bus: "Who here is from LymeNet?" I'll be thrilled to meet my Lymie friends in person! I'll be thrilled to put faces with names! I'll be thrilled to be a part of this protest!
Starry Steph
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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posted
I'll be the one with a lime green cowgirl hat and if the paint & rhinestones adhere...I'll be wearing me some fancy lime green cowgirl boots, too! You can call me the Rhinestone Cowgirl!
YYEEEEEEEEEEEEEEE HAAAAAAAAAAW !!!
Yep! I'll be the one looking like a lime freak!
THIS IS THE BIG ONE FOLKS!
Be there or be insanely jealous! (But keep in mind -- you jealous ones will have activities to help you feel very involved too! You WILL be needed. Stand by for further instructons.)
HUGS &
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
For those of us who can't make it, we look forward to being a support. Let us know what else we can do.
Posts: 2903 | From AZ | Registered: Feb 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by Lymeblue: I hope I can represent there my "state", no matter how far I have to go or how cold the weather might be..thanks to good LLMDS I can endure many " physical adversities"....
Blue, have you found a way to make this doable? I really wanna go but I haven't found a way to get there that I can afford, right now.
I'll do what I can from here but wish I'd be there instead.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
To all of you emailing YOUR state and federal senators and house of reps, please use this link right above my typing.
It's these 20 states that we all worked on this summer ok!
Thank you so much! In order
colorado florida georgia illinois iowa massachusetts michigan nebraska new jersey new mexico new york nevada ohio oregon north carolina south carolina tennessee utah vermont virgina
TINCUP, would you copy these 20 states and paste them in your 1st post on your ABOVE link here,
and post them at the top of your post so it's clear at a glance which states ARE DONE! a big thank you TC
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posted
true, half way.....I'm almost there..... have to do more rounds or laps around the block....
Posts: 983 | From The sky | Registered: Feb 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Go blue!
Do you have your running outfit on?
Half way is... um... half way! Good luck, I hope the rest miraculously becomes possible.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Thanks for posting that link LDfighter...
May I suggest?
Copy the Protest web site address down so you have it. Also get what you need from it now.. and check back for updates.
With LymeNet being trashed by the boneheads.. and communications ruffled a bit.. you may need the info later and not be able to get to it.
posted
Would be good to bookmark the lymenews website so you can get there when lymenet down.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Also, everyone please take Tincup's advice NOW in case something happens with the rally website -
COPY ALL INFO YOU'LL NEED from www.lymenews.org RIGHT NOW, and keep checking back for more info.
Posts: 621 | From US | Registered: Jun 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
care to be there!
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
a friendly reminder for Tincup, would you please do this for me/others by placing this at the top of YOUR ORIGINAL post asking for the 50 states info on federal/state senators and house of reps in DC plus their own states!
Many haven't emailed yet, and knowing which states are done, will help all by reading the ALPHABETICAL STATE LIST I typed up below. Thanks Tincup!
To all of you emailing YOUR state and federal senators and house of reps, please use this link right above my typing.
It's these 20 states that we all worked on this summer ok!
Thank you so much! In order
colorado florida georgia illinois iowa massachusetts michigan nebraska new jersey new mexico new york nevada ohio oregon north carolina south carolina tennessee utah vermont virgina
TINCUP, would you copy these 20 states and paste them in your 1st post on your ABOVE link here,
and post them at the top of your post so it's clear at a glance which states ARE DONE! a big thank you TC .....
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Cobweb
Unregistered
posted
Can I make a sign for the rally like this:
IDSA PROVES there is no vaccine against STUPIDITY!
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Wow, this is just terrific, and you folks are just amazing. I SO wish I could be there - well, I'll be with you in spirit.
And my hat is off to the Connecticut AG - somebody with clout finally had the guts to say, "Hey wait just a darned minute.... let's be sure about this before we blindly follow along."
WOW.
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
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posted
if you can't go, click on the website and donate if you can in lieu of support.
if you CAN go, email the contact on the site to let them know how many will be coming.
Lia is getting a barage of emails from folks who can't go to the rally who have ideas or questions.
she asks that ideas be posted through the website, and that contacts to her direct email be regarding who is COMING and has questions.
remember, the organizers of this rally have Lyme too. let's remember to keep it simple for them as well so the event can be organized as well as possible!
please, please come from far and wide!! you will never regret it. things are HOT to trot in LymeLand right now! now's your chance to make national impact by coming to ny to confront the WORM(S).
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
BettyG..
You are too fast for me!
Ok.. you said.. "TINCUP, would you copy these 20 states and paste them in your 1st post on your ABOVE link here, and post them at the top of your post so it's clear at a glance which states ARE DONE!"
I am sorry I am not following your request... confused? BUT... If you are wanting that info you posted.... in the top post that I posted here.. well, no.
Pretty blunt.. HA! Sorry.
This post is about the protest and I would like to keep that the main focus.. or otherwise I confuse myself. (NOT hard to do)
If we need another post about what you are asking.. which I am STILL not sure what it is...
I'll be happy to start a new one.. or you can.
Now.. if I've missed your meaning all together.. SORRY! I am trying!!! So splane it to me!
By copying the 20 states there in YOUR post you started, that info could be used also for YOUR PROTEST thread here where you are wanting folks to email their FEDERAL/STATE reps and senators.
We worked so many hours on that project, I'd like to see folks utilitize it that were not here when you began that project too for things bigger LIKE ALL THE HAPPENIGNS WITH LDA, IDSA GUIDELINES, etc.
Sorry, I hijacked your post. My apologies TC.
Now, back to PROTEST info.....NOV. 30 is closer!
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posted
Right now, weather.com forcasts 54 degrees F. with 60 % chance of showers for Vall. on Thurs. Nov 30.
Forcasts this far ahead are not nearly as accurate as those 5 days ahead, so keep tuned.
For those taking the train from NYC, still another option, (and more expensive) might be to get off at the White Plains train station where there is a taxi stand, and going to the protest gathering from there. Come with a couple of friends and you can split the fare!
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
And I heard there are going to be some VERY cool guest speakers there. Gotta come see them!
By the way.. bring the kids. They will be making a HUGE contribution for other children who can't be there to help themselves... and will also be able to tell their grandkids THEY were at the big protest that made the history books.
posted
The Lymenuts CD song hits site has come up with close to 100 song verses by now about Lyme and coinfections. Am wondering if you want to look at the site to see if there's anything you might want to copy off for folks to sing at the NY rally. Songlist is summarized on pg 9, plus there are more songs on pgs 9/10 too, including some rousing verses of The ticks go marching one by one, etc, that would be cute with some bass drums.
Posts: 13171 | From San Francisco | Registered: May 2006
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I went to org site, and this was 2nd time I tried email LIA there, and both times my email was REJECTED!
I was going to say there is NO WAY of knowing what was updated, added, or changed from what I saw.
2nd thing, the timesnewroman runs all words TOGETHER for many of us, like me. I suggested changing the front page to ARIAL, 14 pitch for LOW vision folks like myself.
It's easier to print things in ARILA, 14 PITCH to use for directions, and other important stuff. FYI in case you are Lia, or can tell her this.
I suggested she show ** UPDATED/ADDED to whatever changed so everyone can find this EASILY; it isn't now.
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posted
THERE ARE OPNLY 150 PEOPLE SIGNED UP AT THE LYME RIGHTS SIGHT TO GO !!!?
THIS IS THE MOST CRITICAL EVENT TO OCCUR IN ALL THE YEARS I HAVE BEEN HERE!
IF WE ALL DO NOT MAKE EVERY HUMANLY FEASABLE EFFORT TO GO, THE IDSA WILL WIN.
NOONE HERE EXPRESSING ANGUISH OVER THE SUFFERING WE AND THE CHILDREN HAVE FACED RELATED TO THIS DISEASE CAN AFFORD *N O T* TO BE THERE!!!!
PLEASE SIGN UP AND MAKE YOUR PLANS TO COME.
I KNOW TRAVEL IS DIFFICULT, I KNOW IT IS COLD (THO THE FORECAST FOR THE 30TH - fyi -actually -IS MILD)
I KNOW IT IS THE HOLIDAY SEASON, BUT THIS IS WHEN THE GUIDELINES HAVE COME OUT. THIS TIMING CANNOT BE DELAYED!!
(my family is facing great hardship now, but we are going)
LOOK --
IF THESE GUIDELINES ARE NOT ROUUDLY OPPOSED IN GREAT NUMBERS VIA BODIES PRESENT, ALL OUR DAY-TO-DAY-LIVES WILL BE DRASTICALLY EFFECTED IN A SIGNIFICANTLY NEGATIVE WAY.
i have been here a long time, and have heard every chronic sufferer voice their frustrations at the system that opressesd the recognition and treatment of Lyme disease.
ALL of those people effected should be driving, flying, bussing to face off with the IDSA.
we need to see the attendance numbers grow ten times over.
COME!!!!! this is the time to act and be heard.
if you don't, then you are sending a message of acceptance of the crimes of Lyme.
show you do not accept this. BE THERE!
mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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lymemomtooo
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Member # 5396
posted
Let's GO everyone!!!!
Posts: 2360 | From SE PA | Registered: Mar 2004
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