Monday, March 5, 2012

March Madness Campaign

'Unless someone like you cares a whole awful lot,
nothing's going to get better.  It's not.'  ~ Dr. Seuss, The Lorax

Are you someone who cares a whole awful lot about the lack of proper treatment for Lyme sufferers?

Many, many Lyme sufferers are made bed-bound, wheelchair-bound, blind, or worse by this debilitating disease.  Perhaps the worst part is that many are ignored, mocked, and left to suffer and die by their own doctors who tell them chronic Lyme does not exist and that what they need is psychiatric help.  

Help us storm the gates of Congress at this outrage!  Help us demand the current IDSA guidelines on Lyme be overturned.  

Thank you to Lucretia Perilli, Alan Burdge, Lisa Hilton, Tammy Hildebrand, Timothy Grey and all involved in getting our messages much needed Congressional attention.  

Please 'Join' the Facebook Event page 'Lyme Disease: MARCH MADNESS CAMPAIGN' here:  

For those of you without Facebook, here is what it says:

MARCH MADNESS CAMPAIGN – It’s now March 2012 and we are angry and appalled (NOT crazy)!


PHASE 1: On January 4, 2012, the Infectious Diseases Society of America (IDSA) posted this question on their Facebook wall: What would you like to see from your society in the coming year?

Though the question was intended for the IDSA’s professional membership, people stricken with Lyme disease and their loved ones here in the US and abroad took notice, seeing it as one of the few opportunities that we’ve ever had to make our voices heard directly to the IDSA (and the world) regarding the outdated, inaccurate and corrupt IDSA Lyme disease Diagnostic & Treatment Guidelines.

PHASE 2: We continually gathered the comments and created a nearly 300 page document, took up a collection, and had 65 copies printed and bound to take directly to Washington, DC.

PHASE 3: On Tuesday February 21 and Wednesday February 22, Lyme patient activists hand-delivered these copies to US Congressional representatives on Capitol Hill in Washington, DC. Also, the document, in its original book format, is now being posted and shared throughout the internet.

PHASE 4 – MARCH MADNESS!: We need you to call the offices of the US Congressional members listed below. They all now have a copy of the document. The more members you call, the better. The more members you call, the more impact we will have.

Suggested talking points for your calls:

- Rescind the antiquated, inaccurate, and corrupt IDSA Lyme disease Guidelines.
- Push for the passing of Senate bill S 1381: Lyme and Tick‐Borne Disease Prevention,
Education, and Research Act of 2011
House bill HR 2557: To Provide For the Establishment of the Tick‐Borne Diseases Advisory Committee.
- Demand that doctors in every state are no longer threatened with license removal and other penalties for treating Lyme disease patients.
- Insist on better education of the entire medical community in every state regarding acute AND late-stage Lyme disease.
- Demand that a Congressional Briefing be held so that Lyme patients and our advocates get a fair chance to expose the decades-long corruption and special interests surrounding Lyme disease recognition, diagnosis and treatment.
- Be sure to tell your own personal Lyme story and the devastating impact that this illness has had on you and your loved ones.

Here is a link to the IDSA Comments document, which is entitled:

The Devastation of Lives and Lies:
Those with Lyme disease and related chronic infections respond to the
Infectious Diseases Society of America's (IDSA's)
request for comments.

January 4 through February 7, 2012:



If you would like to contact other US Congressional representatives who are not on the list below, please use these helpful links to quickly and easily find their contact info:



Harry Reid (D‐NV), Senate Majority Leader
(202) 224-3542

Mitch McConnell, (R‐ KY) Senate Minority Leader
(202) 224-2541

Eric Cantor (R‐VA), House Majority Leader
Virginia 7th District
(202) 225-2815

Nancy Pelosi (D‐CA), House Minority Leader
California 8th District
(202) 225-4965

John Boehner Speaker of the House
(202) 225-6205

Steny Hoyee Dem Whip
(202) 225-4131

John Larson Dem Caucus Chairman
(202) 225-2265

US Senate Committee on Health, Education, Labor & Pensions
Main Office:
(202) 224-5375

Tom Harkin (IA) *
(202) 224-3254

Barbara A. Mikulski (MD) *
(202) 224-4654

Patty Murray (WA) *
(202) 224-2621

Bernard Sanders (I) (VT)
(202) 224-5141

Robert P. Casey, Jr. (PA)
(202) 224-6324

Kay R. Hagan (NC)
(202) 224-6342

Al Franken (MN)
(202) 224-5641

Sheldon Whitehouse (RI)
(202) 224-2921

Richard Blumenthal (CT)
(202) 224-2823

Richard Burr (NC)
(202) 224-3154
Rand Paul (KY)
(202) 224-4343

Lisa Murkowski (AK)
(202) 224-6665

US Senate Committee on Appropriations
Democratic Subcommittee Members:

Tom Harkin (IA) *
(202) 224-3254

Senator Herb Kohl (WI)
(202) 224-5653

Senator Patty Murray (WA) *
(202) 224-2621

Senator Mary Landrieu (LA)
(202) 224-5824

Senator Jack Reed (RI)
(202) 224-4642

Senator Sherrod Brown (OH)
(202) 224-2315

Republican Subcommittee Members:
Senator Richard Shelby (Ranking) (AL)
(202) 224-5744

Senator Kay Bailey Hutchison (TX)
(202) 224-5922

Senator Ron Johnson (WI)
(202) 224-5323

Senator Lindsey Graham (SC)
(202) 224-5972

Additional Govt. Officials Concerned with Lyme Epidemic:
Scott Brown (R‐MA)
(202) 224-4543

Susan Collins (R‐ME)
(202) 224-2523

Tim Holden (D‐PA)
Pennsylvania 17th District
(202) 225-5546

Chris Gibson (R‐NY)
New York 20th District
(202) 225-5614

Kirsten Gillibrand (D‐NY)
(202) 224-4451

Frank Lautenberg (D‐NJ)
(202) 224-3224

Carl Levin (D-MI)
(202) 224-6221

Joseph Lieberman (I‐CT)
(202) 224-4041

Robert Menendez (D-NJ)
(202) 224-4744

Frank Pallone (D-NJ)
(202) 225-4671

Rand Paul (R-KY)
(202) 224-4343

Ron Paul (R-TX)
(202) 225-2831

Marco Rubio (R-FL)
(202) 224-3041

Charles E. Schumer (D‐NY)
(202) 224-6542

Christopher Smith (R‐NJ)
New Jersey 4th District
(202) 225-3765

Patrick Toomey (R-PA)
(202) 224-4254

Sheldon Whitehouse (D‐RI)
(202) 224-2921

Frank Wolf (R‐VA) - Virginia 10th District
(202) 225-5136

* Denotes members serving on multiple committees

1 comment:

  1. Thank you for all your help and raising awareness to this campaign and to the Lyme cause!