Topic: IDSA Lyme Protest in Philly....IMPORTANT EVENT!
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
PLEASE SHARE THIS EVERYWHERE AND PLEASE ATTEND!
Lyme Activists Target IDSA’s IDWeek Conference
Philadelphia, PA – WEBWIRE – Sunday, September 21, 2014
On October 10th and 11th, 2014 chronically ill Lyme disease patients and supporters from around the United States will gather for a protest at the IDWeek medical conference in Philadelphia.
They will call on the Infectious Diseases Society of America (IDSA) to update its guidelines for Lyme disease to reflect the current state of science and improved standards for patient care.
Protest co-organizer Josh Cutler has been fighting late stage neurological Lyme disease for nine years. This condition affects the brain, the central nervous system, and the autonomic nervous system that regulates blood pressure and other vital functions.
“We are uniting to demand that IDSA stop its misrepresentation of science and update its guidelines for Lyme,” says 34-year-old Cutler, who went from good health and a high paying IT job to near total disability after he was infected with Lyme. “IDSA needs to put our health first, ahead of patents and profits.”
A key concern of protesters is the refusal of IDSA and CDC to acknowledge the epidemic of chronic Lyme disease and the serious threat it poses to public health.
Kenneth Liegner, M.D., who speciallizes in internal medicine, critical care, Lyme disease and related illnesses, suggests that IDSA has neglected to consider a large amount of evidence that chronic Lyme exists and is common. Liegner practices in Pawling, NY near the epicenter of the Lyme epidemic. In a September 2010 letter to the Institute of Medicine, Liegner said:
“Honest review of the worldwide peer-reviewed scientific literature reveals an abundance of evidence for the existence of chronic Lyme disease . . . . The standard of care set by the IDSA 2006 Lyme disease guidelines is one of medical neglect of persons suffering from chronic Lyme disease.”
Another concern among activists and many physicians is the extent conflicts of interests have influenced the IDSA guidelines and Government policies to the detriment of patients.
A review of a Lyme Disease Association report: Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination and Treatment Guidelines shows dozens of potentially serious conflicts of interests among the members of the CDC and FDA committees that set Federal policy on Lyme disease. The same report documents widespread conflicts of interests among members of the committee that produced IDSA’s guidelines for Lyme disease.
According to a report by the U.S. House of Representatives Committee on Government Reform: “The CDC’s policy of issuing annual waivers creates an environment where people do not take the conflict of interest issue as seriously as they should. This policy, in concert with sloppy monitoring of the completeness of members’ financial disclosure statements, allows for a clubby environment where ethical concerns are downplayed.”
A vital issue that affects all Lyme patients is insufficient Federal funding for research, awareness and prevention. FY2013 NIH funding for Lyme, at $20 million, is barely one percent of the $1.8 billion of NIH funding for emerging infectious diseases (Lyme is included in this category), despite the number of new cases of Lyme annually being many times greater than any other disease in that category.
Some researchers have also expressed concern about the quality of federally funded research.
Willy Burgdorfer, discoverer of the bacteria that causes Lyme, had the following comment when interviewed by the director of the award winning documentary Under Our Skin: “The controversy in Lyme disease research is a shameful affair. And I say that, because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing. Serology [testing bodily fluids for exposure to diseases] has to be started from scratch with people who don’t know beforehand the results of their research.”
The IDWeek protest is organized by the Mayday Project Lyme patient advocacy group. Co-founders Josh Cutler and Allison Caruana call on Lyme patients and others touched by Lyme to stand together in Philadelphia and make a difference: “We demand an end to the conflicts of interest by researchers who create guidelines that discourage doctors from providing the best standard of care. Together, we will send a strong message that the handling of the Lyme epidemic by IDSA, CDC and FDA is appalling and shameful and that patients are joining forces to fight back and demand reform.”
About the Mayday Project
The Mayday Project is an advocacy group for Lyme disease patients, formed by volunteers who have been touched by Lyme in many ways. They aim to raise awareness about Lyme disease and related tick-borne illnesses. Mayday supporters advocate for more accurate tests, better guidelines, improved access to treatment, increased education for physicians, and more funding for research.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
We need big numbers. This is the fight that will get us noticed ... in May we made Fox News and the IDSA actually came down to talk to us. We HAVE to follow up with this event in huge numbers! Please post wherever you can!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
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I hope you get them. The New York Times vigil didn't get large numbers. I was there and I plan to go to Philly, as well. I don't get the sense, at least on this site, that these calls to action really get much attention.
At least it appears that way, as there is very little feedback.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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I am not on facebook so I guess I am the last to know..?? Going to do my best to get us there.
Posts: 472 | From New Jersey | Registered: Dec 2007
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Hey everyone, the Mayday Project team is asking that starting today, Oct 8th, you start contacting everyone on this list and asking them to review the science behind Lyme Disease and other tick borne infections. Let them know Lyme patients will not give up or go away until this is done.
Barbara E. Murray, MD, FIDSA, President is on the IDWeek 2014 Committee. Contact Information Office Phone: 713-500-6745 Fax: 713-500-6766 Assistant Information Assistant: Lori Y iPhone: 713-500-6745
Johan Bakken, MD, PhD, FIDSA Phone: 218-249-7990 Email:[email protected] Address:1001 East Superior Street Suite L201 Duluth, MN 55802
David A. Relman, MD, FIDSA, [email protected] Clinical VA Palo Alto Health Care System 3801 Miranda Ave Ste 154T Bldg 101 Rm B4 185 Palo Alto, CA94304 Tel: (650) 852-3308 Fax: (650) 852-3291
Penelope H. Dennehy, MD, FIDSA, Secretary RIH Dept. of Pediatrics 593 Eddy St POB 018 Providence, RI 02903 Phone: 401-444-8360 Fax: 401-444-5650
Cynthia L. Sears, MD, FIDSA 410-955-1725 Main Location The Johns Hopkins Hospital
David A. Relman, MD, FIDSA, Immediate Past President [email protected] Clinical VA Palo Alto Health Care System 3801 Miranda Ave Ste 154T Bldg 101 Rm B4 185 Palo Alto, CA 94304 Tel: (650) 852-3308 Fax: (650) 852-3291
Barbara D. Alexander, MD, MHS, FIDSA DUMC 3035 Durham, NC 27710 Appointment Telephone:919-668-0789 Fax:919-684-8519
Upton D. Allen, MD, FIDSA [email protected] University Ave. Toronto, Ontario, Canada5G1X8
Helen W. Boucher, MD, FIDSA 750 Washington St Boston, MA 02111 Phone: (617) 636-5000
R. Michael Buckley, MD, FIDSA 301 S 8th St Ste 1b Philadelphia, PA 19106 Phone: (215) 829-5354 Fax: (215) 829-7132
Louis B. Rice, MD 164 Summit AveProvidence, RI 02906 (401) 793-2928 (Office)(401) 793-7401 (Fax)
Steven K. Schmitt, MD, FIDSA Cleveland Clinic Infectious Dis9500 Euclid Ave Ste G21, Cleveland, Ohio 44195-0001 (216) 444-3606
Judith A. Aberg, MD, FIDSA, HIVMA Representative BELLEVUE HOSPITAL CENTER 462 1st Ave New York, NY 10016 (212) 562-5555 (Office)
Janet A. Englund, MD, FIDSA, PIDS Liaison Seattle Children'sMA.7.226 - Infectious Disease Clinic 4800 Sand Point Way NE Seattle, WA 98105206-987-2073
Anthony Harris, MD, MPH, SHEA Liaison Anthony Harris, MD 685 W. Baltimore Baltimore, MD 21201 Phone: (410) 706-0064 Fax: (410) 706-0098
Arizona ID Society Timothy T. Kuberski, MD 2601 E. Roosevelt St, Suite 380 Phoenix, AZ 85009 Phone: 602-344-1421 [email protected] ARIDS Web Site
Armed Forces ID Society Patrick Danaher, MD Associate Professor Uniformed Services University Phone: (210) 825-0525 AFIDS Web Site
Bay Area (CA) ID Society W. Lawrence Drew, MD, PhD UCSF-Mt. Zion Med. Center, Box 1629 1600 Divisadero St., Room B-201 San Francisco, CA 94115 Phone: 415-885-7315 Fax: 415-353-9583
Chicago (IL) Area ID Society Joseph Pulvirenti, MD Chairman Infectious Diseases Associate Chairman of Internal Medicine Provident Hospital 500 East 51st Street Chicago, IL 60615 Phone: 312-572-2762 Fax: 312-572-2733 [email protected] Chicago ID Society
Connecticut ID Society Kevin Dieckhaus, MD Chief, Division of Infectious Disease University of Connecticut Health Center 263 Farmington Avenue Farmington, CT 06030 Tel: 860-679-4745 [email protected]
Florida ID Society Jaime Carrizosa, MD Infectious Disease Consultants 5037 Shoreline Drive Sanford, FL 32771 Phone:(407) 830-5577 FIDS Web site
Georgia ID Society Philip Brachman, Jr., MD 2001 Peachtree Rd Suite 640 Atlanta, GA 30309 Phone: 404-355-3161 Fax: 404-355-1353 [email protected]
Greater Washington (DC) ID Society Paige Waterman, MD Walter Reed Army Institute of Research 503 Robert Grant Ave. Silver Spring, MD 20910 Phone: 301-319-9599 Fax: 301-319-9548 [email protected]
Hawaii ID Society William K. Lau, MD Univ. of Hawaii School of Medicine Div. of ID, Dept. of Med. 1329 Lusitania St., Suite 305 Honolulu, HI 96813 Phone: 808-532-2955 Fax: 808-532-2960 [email protected]
ID Association of California Barry Statner, MD 2220 Lynn Rd., Ste 301 Thousand Oaks, CA 91360 Phone: 805-495-1073 Fax: 805-495-5836 Email: [email protected]
Ronald J. Goldman, Executive Director PO Box 66751 Los Angeles, CA 90066 Phone: 310-216-9265 Fax: 310-216-9274 [email protected] IDAC Web site
Infectious Diseases Association
of Puerto Rico Agripino Lugo, MD P.O. Box 96 Humacad, PR 00792 Phone: 787-852-1681
ID Society of Indiana John R. Black, MD MiraVista Diagnostics & MiraBella Tech Clarian Health Partners, Inc. 1633 N Capitol, Ste. 640 Indianapolis, IN 46202 Phone: 317-962-0335 Fax: 317-962-0838 [email protected]
ID Society of New Jersey Sindy Paul, MD, MPH IDSNJ Web site
ID Society of New Mexico Gary D. Overturf, MD Tricore Reference Laboratories 1001 Woodward Place, NE Albuquerque, NM 87102 Phone: 505-938-8661 Fax: 505-938-8505 [email protected]
ID Society of New York (IDSNY) Robert Grossberg, MD President Montefiore Medical Center 111 East 210th Street Bronx, NY 10467 Phone: 718-920-5276 [email protected] IDSNY Website
ID Society of Ohio Denise Signs, MD Northeastern Ohio Medical University [email protected] IDOhio Website
ID Society of St. Louis Aamina Ahktar, MD Private Practice Infectious Diseases, P.C. 10004 Kennerly Rd 368B St. Louis, MO 63128 IDSTL Website Please CC:
Susan Wightman, RN, BSN, ACRN Executive Director Infectious Diseases Division Washington University School of Medicine Box 8051 660 S. Euclid Ave St. Louis, MO 63110 Phone: 314-454-8275 Fax: 314-454-8280 [email protected]
ID Society of Washington Michael Myint, MD Virginia Mason Medical Center Phone: 206-341-0846 Fax: 206-223-6814 [email protected]
Kansas City (MO) ID Society David S. McKinsey, MD 6400 Prospect Ave, Ste 392 Kansas City, MO 64132-1199 Phone: 816-822-8486 Fax: 816-822-0490 [email protected]
Long Island (NY) ID Society Marcia Epstein, MD, FIDSA, FACP North Shore Long Island Jewish Health System 300 Community Dr. Manhasset, NY, 11030 Phone: 516-562-4280 Fax: 516-562-2626 [email protected]
Louisiana/Mississippi ID Society Raymond A. Coghlan Northwest LA ID Consultants 2551 Greenwood Rd. Ste 150 Shreveport, LA 71103 Phone: 318-212-6888 Fax: 318-212-6890 [email protected]
Massachusetts ID Society Daniel McQuillen, M.D. Lahey Hospital 41 Mall Road Burlington MA 01805 Telephone: 781-744-8608 [email protected]
Michigan ID Society Sandro Cinti, MD President University of Michigan 1216 W. Washington St. Ann Arbor, MI 48103 Phone: 734-662-0575 [email protected] MIDS Web Site
Cathie L. Martin, Executive Director 13937 Morgan Hill Rd. Traverse City, MI 49684 Phone: 231-947-2772 Fax: 231-947-3195 [email protected]
North Carolina ID Society David Weinrib, MD Carolinas Medical Center 3822 Woody Grove Lane Charlotte, NC 28210 Phone: 704-355-2480 Fax: 704-355-7626 [email protected]
North Central Chapter, IDSA (MN) Rajesh Prabhu, MD Duluth Clinic 400 East 3rd St. Duluth, MN 55805 [email protected] Web site
Northern California ID Society Stuart Cohen, MD Department of Epidemiology and Infection Control Div of ID 4150 V St. Ste 500 Sacremento, CA 95817 Phone: 916-734-3742 Fax: 916-734-7766 [email protected] [email protected]
Northern New England (ME/NH/VT)ID Society W. Kemper Alston, MD University of Vermont Fletcher Allen Health Care Smith Building, Room 268 Burlington, VT 05401 Phone: 802-847-2264 Fax: 802-847-5322 [email protected]
ID Society of Oregon Melissa Murphy, MD Portland VA Medical Center Phone: 503-220-8262 x51981 Fax: 503-273-5348 [email protected]
Pennsylvania ID Society Robert C. Aber, MD Penn. State College of Medicine 500 University Drive, H176 Hershey, PA 17036 Phone: 717-531-5016 Fax: 717-531-5831 [email protected]
Rocky Mountain Pus Club
(ID Society) George Risi, MD, FACP Fellow, Infectious Disease Society of American
Infectious Disease Specialists, PC 614 W Spruce St Missoula, MT 59802 Phone: 406-327-1666 Fax: 406-329-2993 [email protected]
Tennessee ID Society Kerry Cleveland, MD 1211 Union Avenue, Suite 340 Memphis, TN 38104 Phone: 901-448-5770 Fax: 901-448-5940 [email protected]
Texas ID Society Elizabeth A. Walter, MD University of Texas Health Science Center at San Antonio Phone: 210-567-4823 [email protected] TIDS Web site
IDSA Liaison: Thomas F. Patterson, MD Univ. of Texas Health Science Ctr. Div. of ID, Dept. of Medicine 7703 Floyd Curl Dr., MSC 7881 San Antonio, TX 78229-3900 Phone: 210-567-6680 Fax: 210-567-3303 [email protected]
Virginia ID Society Suzanne Lavoie, MD 6104 Isleworth Dr. Glen Allen, VA 23060 Phone: 804-828-9711 Fax: 804-828-3097 [email protected]
HIVMA @HIVMA The HIV Medicine Association promotes quality in HIV care, advocating for science-based polices that ensure a comprehensive response to the AIDS pandemic hivma.org
IDSA @IDSAInfo News and information from the Infectious Diseases Society of America. Ask questions, get answers: IDSA is your one-stop shop for infectious disease info. Arlington, VA idsociety.org
IDWeek @IDWeek2014 A joint meeting of IDSA, SHEA, HIVMA, PIDS. Advancing science, improving care. Philadelphia, PA, USA
ID in Children @PedSuperSite The official Twitter feed for the Infectious Diseases in Children
Rebiotix Inc. @Rebiotix Rebiotix is a clinical-stage biotechnology company revolutionizing the treatment of challenging GI diseases by harnessing the power of the human microbiome. Roseville, MN rebiotix.com
Healthecareers @Healthecareers HEALTHeCAREERS is the single source for all healthcare recruitment needs, providing unparalleled access to job seekers across all disciplines and specialties. Centennial, CO healthecareers.com
Spectra254 @Spectra254 Spectra254 is a developer of high-power, easy-to-use, affordable UVC light sanitation systems that eliminate 99.9%of pathogens in the air and on surfaces. Danbury, Conn. spectra254.com
SHEA @SHEA_Epi Society for Healthcare Epidemiology of America’s mission is to prevent & control HAIs & advance healthcare epidemiology
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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MAYDAY! MAYDAY! Please read and share! We need ALL Lyme patients to get involved in this Call-to-Action. Tomorrow and Saturday -we need you to call the news stations of Philadelphia, asking them to cover our event.
We have constructed a brief statement to give to those answering the phones at the new stations that stands with our mission for holding this event. This will also help those who have suffer from anxiety. We would appreciate you keeping to the point, as not to overload or frustrate the reporters.
Our statement is; " Hello, my name is......... I'm calling you today about The Mayday Project's Candlelight Vigil, Downtown Marriott, 6-8 p.m. Friday night from 6-9. Saturday we'll be hosting a Lyme Disease Patient Rights Protest in front of the Philadelphia Convention Center, IDSA, ID Week Convention. The IDSA needs to revise their guidelines. They are ignoring current scientific evidence of the existence and prevalence of chronic Lyme disease. Because of their failure to even comply with even their own policies regarding revisitation of current guidelines, people with chronic Lyme disease are suffering and even dying."
Here are the station phone numbers: ABC- 215-878-9700 CBS- 215-977-5300 PBS- 215-351-1200 MY- 215-878-1700 FOX- 215-925-2929 PBS- 215-483-3900 WHYY- 215-351-1200 CW- 215-977-5710
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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posted
I just finished calling the list of TV stations and a number of of the Philadelphia stations are sending reporters to the Vigil! Let's see if we can get them all to cover the vigil and protest and bring more public awareness to our issues.
Now for the newspapers.
-------------------- KarlaL Posts: 694 | From New Lebanon, NY | Registered: Dec 2010
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Thanks for your efforts Karla! I understand the need to call the TV stations to urge them to cover the activities in Philly this weekend. What are we being asked to do with regard to the names of organizations and professionals that are listed in the Mayday Facebook page?
Posts: 2386 | From New England | Registered: Aug 2011
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If they have a phone number ask them to review the science behind Lyme Disease and other tick borne infections and refer them to the May Day Project website . Let them know Lyme patients will not give up or go away until this is done.
If you can get an email address or are able to post, then send the two links below.
posted
Unbalanced news coverage from yesterday's protest outside the IDSA's annual meeting. Unfortunately, the reporter chose not to talk to any LLMD's before going to press.
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