PETITION UPDATE
The Ad Hoc Patient and Physician Coalition against IDSA Proposed Lyme Guidelines
SEP 7, 2019 —
From: CARL TUTTLE <runagain@comcast.net>
To: tickbornedisease@hhs.gov
Cc: (91 Undisclosed recipients)
Date: September 7, 2019 at 8:48 AM
Subject: The Ad Hoc Patient and Physician Coalition; Comments of the IDSA Proposed Lyme Guidelines September 6, 2019
To the Tick-Borne Disease Working Group;
Please follow the link below to see comments to the IDSA Proposed Lyme Guidelines. These comments are endorsed by members around the world because what has been established here in the United States has adversely affected public health globally.
The link provided is from my personal Dropbox storage area.
The Ad Hoc Patient and Physician Coalition
Comments of the IDSA Proposed Lyme Guidelines September 6, 2019
About the Ad Hoc Patient and Physician Coalition: The Ad Hoc Patient and Physician Coalition consists of patients and physicians who are concerned that the proposed Lyme disease guidelines of the Infectious Diseases Society of America (IDSA), American Academy of Neurology (AAN), and American College of Rheumatology (ACR) will further restrict access to care and harm patients by leaving them undiagnosed and undertreated.The coalition consists of over 75 organizations, from 8 countries: the US, Canada, Australia, UK, France, Netherlands, Germany, Belgium (including LymeDisease.org, the national Lyme Disease Association, Bay Area Lyme Foundation among others) and the International Lyme and Associated Diseases Society, which represents clinicians who treat Lyme disease nationwide. (List of signatories attached.)
These comments were authored by Lorraine Johnson, JD|MBA, CEO LymeDisease.org and Dr. Elizabeth Maloney, who represents the International Lyme and Associated Diseases Society. The comments were filed on August 8, 2019 and revised on September 6, 2019.
Page 56
Ad Hoc Patient and Physician Coalition Members As of September 6, 2019
The following 77 organizations have endorsed the Ad Hoc Patient and Physician Coalition Comments of the IDSA Proposed Lyme Guidelines. (List updated Sept. 6, 2019)
Countries represented: United States, Canada, Australia, France, United Kingdom, Netherlands, Germany, and Belgium.
Alabama Lyme Disease Association
Arkansas Lyme Coalition
Arkansas Lyme Foundation
Association Québécoise de la Maladie de Lyme (Canada)
Bay Area Lyme Foundation
BC Lyme (British Columbia, Canada)
Brookfield/Wolfeboro New Hampshire support group
Borreliose-Bund, Germany
Canadian Lyme Disease Foundation
Central Massachusetts Lyme Foundation
Charles E. Holman Morgellons Disease Foundation
Chronic Lyme Disease Support and Protest UK.
ChroniLyme (Lyon, France)
Colorado Tick-Borne Disease Awareness Association
Dean Center for Tick Borne Illness, Massachusetts
Dutch Lyme Association (Lymevereniging), Netherlands
Florida Lyme Disease Association
France Lyme, Association de Lutte Contre les Maladies Vectorielles à Tiques (France)
Howard County Lyme Awareness Group, Maryland
Hudson Valley Lyme Disease Association
Illinois Lyme Association
International Lyme and Associated Diseases Society
Kentucky Lyme Disease Association
Le Droit de Guerir (“The right to heal”), France
Litchfield County Lyme Network (Connecticut)
Living with Lyme, London/Middlesex (Canada)
LivLyme Foundation
Lyme Action Network
Lyme Alliance of the Berkshires
Lyme Association of Greater Kansas City
Lyme Center, Chico, California
LymeDisease.org
Lyme Disease Association (US)
Lyme Disease Association of Australia
Lyme Disease Association of Southeastern Pennsylvania
Lyme Disease Association, Rhode Island Chapter
Lyme Disease Education & Support Groups of Maryland
Lyme Disease UK
Lyme Hope (Canada)
Lyme-int Association (Belgium)
Lyme Newport (Rhode Island)
Lyme Ontario (Canada)
Lyme Stats 57
LymeConnection.org
LymeLight Foundation
Madison Lyme Support Group
Massachusetts Lyme Legislative Task Force
Memphis Tennessee Lyme Network
Midcoast Lyme Disease Support & Education
Military Lyme Support
MSIDS, Inc, Australia
NE Ohio Lyme Foundation
New Brunswick Lyme Disease Association Inc.- LymeNB (Canada)
New Jersey Lyme Resource
New York City Lyme Disease Support Group
OnLyme-Aktion.org (Action Alliance Against Tick-borne Diseases), Germany
Ontario Lyme Alliance (Canada)
PA Lyme Resource Network (Statewide)
PA Lyme Resource Network, Bucks County
PA Lyme Resource Network, Columbia County
PA Lyme Resource Network, Lehigh Valley
Patient Centered Care Advocacy Group
Pennsylvania Lyme Disease Awareness Committee of Chester-Delaware County Farm Bureau (PLDAC)
Penticton, BC area Lyme Group (Canada)
Sam’s Spoons Foundation for Lyme Support & Education
Southern Arizona Lyme Disease Association
Southern Oregon Lyme Disease
Texas Lyme Alliance
Tick Wise Education, Inc. (501c3)
Time for Lyme, ASBL (Belgium)
TxLyme Yahoo Online Support Group (Texas)
Utah Coalition for Lyme Disease
Vernon Lyme Disease Support Group, Vernon, BC (Canada)
VIRAS – Vector-borne Infections: Research, Analysis, Strategy (UK)
VOCAL Ottawa (Voices of Canadians About Lyme)
Wisconsin Lyme Network
York North Lyme (Canada)
______________________
Carl Tuttle
Lyme Endemic Hudson, NH
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For more on the proposed IDSA Lyme treatment guidelines: https://madisonarealymesupportgroup.com/2019/08/22/ad-hoc-patient-and-physician-coalition-from-around-the-world-reject-newly-proposed-idsa-guidelines/
https://madisonarealymesupportgroup.com/2019/08/11/idsa-extends-comment-period-allows-downloads/
