Anyone else out there hear the Midday Magazine report on WAMC at lunch time today interviewing the notorious Gary Wormser as some sort of "expert" on tick-borne diseases like babesiosis and Lyme?...
I am literally speechless...
[...as is anyone who saw the incredible documentary "Under Our Skin" exposing Wormser and IDSA...]
Well, I did something about it-- earlier today I sent the letter below to Alan Chartock, Greg Fry, Katie Britton, and everyone at WAMC; if you agree, email firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com too!....and call these WAMC numbers too:
Main Office: (800)323-WAMC (9262)
Vox Pop Call In: 800-34-TALK-1 (348-2551)
Listener Comment Line: (800) 695-9170
Fax: (518) 432-6974
Newsroom Fax: (518) 432-0991
News Department Managing Editor Katie Britton:
(518) 465-5233 x111
.............................................if you care, that is........
...................................................(if you saw "Under Our Skin", that is, and know Wormser's a sick joke)....
Wake up, folks!...
[again-- I'm not alone on this folks-- join 344 signed on to my http://www.PetitionOnline.com/StopLyme !]
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[email here below I sent earlier today to Alan, Greg, Katie, all @ WAMC; compose your own, make yours polite]
To: firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com
Subject: Alan/Greg/Katie/WAMC-- please don't help Wormser's cover up re: tick-borne diseases...
Hi Alan, Greg, Katie, all at WAMC...
Earlier today on Midday Magazine I heard the following piece:
"Doctor, Researchers Agree on Spread of Tick-Borne Disease"
Of course, we all must be increasingly mindful and careful when it comes to tick-borne diseases; there truly is an epidemic of tick-borne disease out there in Hudson Valley region-- entire area covered by WAMC Northeast Public Radio (all the more reason for this issue to be truly covered fully and fairly)...
[Alan-- I know even you've come down with babesiosis-- hopefully you agree: whole truth should out!]
My only concern is this-- that Dr. Gary Wormser was profiled in the report today as some sort of expert to be respected on the issue of tick diseases, when, as anyone knows who has seen the widely viewed "Under Our Skin" documentary, according to the Center for Science in the Public Interest, Dr. Gary Wormser, lead author of the Infectious Diseases Society of America guidelines, is actually, perhaps more than anyone in the U.S., singlehandedly responsible for those suffering from tick diseases like babesiosis and Lyme disease to be denied insurance coverage for needed antibiotics treatment from their HMO's (recall: "Under Our Skin" documented massive conflicts of interest involved w/Wormser)...
Fact: Wormser has led the IDSA for years to the erroneous conclusion that tick diseases like babesiosis and Lyme can be treated with just a few weeks of antibiotics (exactly HMO's want to hear; not for patients; note as well-- babesiosis is covered in "Under Our Skin" as well).
[please go out and see "Under Our Skin" at a local screening asap; see http://www.UnderOurSkin.com ;
the WAMC post actually also has links to CDC info re: babesiosis and Wormser's press release as well:
http://www.cdc.gov/babesiosis/ (the CDC has been part of cover-up re: needed antibiotics/tick disease);
Recall Under Our Skin blogpost on this April 30th-- "Medical Panel Keeps Lyme Guidelines 'As Is'":
http://underourskin.com/blog/?m=201004 -- points out exactly what Dr. Gary Wormser is all about...
In the future, please consider interviewing these two local Lyme-literate doctors on this issue:
-- Dr. Richard Horowitz of Hyde Park-- of ILADS (International Lyme and Associated Diseases Society)
-- Dr. Steven Bock of the Rhinebeck Health Center ( http://www.RhinebeckHealth.com ).
Fact: "Lyme disease patients' lack of insurance coverage leads to limited courses of antibiotics, often not effective in eradicating the Lyme bacterium, which has the ability to hide inside cells, kill human lymphocytes and certain B cells, and to change into other forms."
[see: http://www.LymeDiseaseAssociation.org/Testimony20091202.pdf ]
Also, yes, it's also true that you could have even interviewed yours truly on this subject; last July I got a resolution passed 22-3 on this issue in the Dutchess County Legislature-- for NYS to follow the good example of Rhode Island on this and enact legislation to make sure that health insurance coverage includes full coverage for tick-borne diseases like Lyme and babesiosis (beyond just a few weeks of antibiotics; the Northern Dutchess News ran a front-page article on my resolution passing 22-3 last July)-- and yes, even just this past May (a few months ago), I actually also got five Republicans in our County Legislature to sign on to a similar letter signed by all 7 members of the Democratic caucus...
A few months ago I also started an online petition on this very issue; over 340 NYS residents have signed on from all over the state; click on "view current signatures" here to see their names/comments:
Recall 80+ folks who came out this past May 12th to free screening organized by yours truly of "Under Our Skin" at the Rhinebeck Town Hall-- with special guest speakers at Q & A session afterwards including Dr. Steven Bock of the Rhinebeck Health Center and Dr. Richard Horowitz of Hyde Park, along with Rhinebeck's Alyssa Knapp of http://www.FoodforLyme.blogspot.com and many others...
[recall Dem CT Att. Gen investigation on this http://www.ct.gov/AG/cwp/view.asp?a=2795&q=414284 ]
[and-- yes, this issue was also point #16 of my gov. campaign-- http://www.petitiononline.com/joel4ny ]
Fact: Dutchess County is now one of the three highest counties in the United States in per capita Lyme cases, as Rep. John Hall, former County Legislator Bill McCabe, and many others have pointed out.
[see: http://www.LymeDiseaseAssociation.org ]
Must-read: 12/2/09 testimony of Patricia Smith President of the Lyme Disease Association before the Pennsylvania House Majority Policy Committee Hearing on Combating Lyme Disease Dec. 2, 2009 in Worcester, PA-- http://www.LymeDiseaseAssociation.org/Testimony20091202.pdf .
Fact is also that current testing for Lyme often unreliable, as "Under Our Skin" film points out:
"The complexities of Lyme disease symptoms cause many misdiagnoses. Borrelia burgdorferi, escapes detection because the tests are not 100% reliable. Misdiagnosis of Lyme disease is rampant. In the 40% to 45% of cases where there is no rash after infection, the early symptoms of Lyme disease are difficult to classify. Diagnostic tests are only 50% to 60% reliable. The disease mimics many other conditions, and some doctors will not diagnose it based on symptoms if test results are negative."
[see: http://generalmedicine.suite101.com/article.cfm/incorrect_diagnosis_of_lyme_disease ;
[also see: http://www.anapsid.org/lyme/lymeseroneg.html ; http://www.lymesite.com/reliable_testing.htm
http://www.docstoc.com/docs/4555403/long-standing-complaints-about-unreliable-tests-for-Lyme-disease ; http://www.associatedcontent.com/article/245897/standard_lyme_disease_tests_not_reliable.html ]
So-- please-- asap-- interview Andy Abrahams Wilson or Kris Newby of http://www.UnderOurSkin.com, Hyde Park's Dr. Richard Horowitz of http://www.ILADS.org , and/or Dr. Steven Bock of http://www.RhinebeckHealth.com (and/or me) on any/all of this-- do not help Dr. Gary Wormser cover up any longer how he is stopping NYS residents from being properly treated for babesiosis and Lyme...
Four-term Dutchess County Legislator, D. #11
324 Browns Pond Road
Staatsburg, NY 12580
Host of "The Real Majority Project" on WVKR 91.3 FM http://www.WVKR.org Fridays 5-6 pm
Host of "Common Sense" on WHVW 950 AM Saturdays 8-10 am
Host of http://www.DutchessDemocracy.blogspot.com
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From http://underourskin.com/blog/?m=201004 ...
Medical panel keeps Lyme guidelines "as is"
April 30th, 2010 | Category: Controversy, Press, Science
Photo: Gary Wormser, MD, lead author of the IDSA guidelines, attributes many chronic Lyme symptoms to "the aches and pains of daily living."
After reviewing 3,000 pages of evidence challenging advice in its 2006 Lyme disease medical guidelines, eight Infectious Diseases Society of America (IDSA) panelists voted to keep the 45-page document "as is."
Dr. Robert Bransfield, the president of a group of community-based Lyme specialist physicians (ILADS) issued this statement in response:
"It's a sad day for the health care system and for everyone who suffers from the Lyme disease epidemic. The IDSA's flawed positions means patients will continue to suffer with incorrect diagnosis and improper treatment."
"By and large, the people on the IDSA panel who made this decision are ivory tower researchers," says Bransfield. "They're not the doctors on the front lines looking into the eyes and faces of these very sick patients, performing exams and then assuming long term responsibility for dealing with patients suffering from chronic Lyme."
Bransfield and ILADS point to a number of discrepancies and other concerns about the vote, including:
-68 out of 69 of the original 2006 recommendations under review were OK'd with unanimous votes. "How can there be such a total consensus with any scientific issue?" asked Bransfield. "It's highly suspect and beyond comprehension."
-If Lyme cannot be chronic, then why did the guideline's authors acquire 200 Lyme disease patents and receive $76 million in Federal funds to study it?
-The original guidelines are not only controversial, but written back in 2006, are considered old and out of date.
-The CDC has also advised for many years that the disease should be diagnosed on clinical grounds and not by unreliable laboratory tests. The Lyme disease tests are inaccurate 50% of the time.
-The IDSA's decision reinforces that doctors have little control when it comes to treating diseases such as Lyme. Researchers and insurance companies remain in the driver's seat of diagnosis and treatment.
In May 2008, the IDSA agreed to re-evaluate its Lyme disease guidelines as part of a settlement agreement for an antitrust investigation by the Attorney General of Connecticut, Richard Blumenthal. The crew of the documentary, UNDER OUR SKIN, covered this investigation as it unfolded, and revealed some of the evidence alluded to in Blumenthal's investigation, including the significant conflicts of interest among the original IDSA guidelines panelists, suppression of scientific evidence by panelists, and exclusion of panel members with opposing viewpoints.
During a telephone press conference on the IDSA's announcement of the ruling, IDSA president Richard Whitley, MD, said he thought Blumenthal had been "misguided by the [Lyme] activists" and that the antitrust suit against IDSA wasn't "justified or warranted."
- To read the IDSA report, click here.
- To read the ILADS response, click here.
- To download a detailed history of the IDSA investigation, click here.
- To read the Attorney General's release on the investigation, click here.
- To read UNDER OUR SKIN's Jordan Fisher-Smith's letter to the IDSA and learn what you can do, click here.
"Shame on you IDSA" says UNDER OUR SKIN's Jordan Fisher Smith
April 25th, 2010 | Category: Call to Action, Celebrities, Controversy, Patient Stories
Jordan Fisher Smith, the eloquent park ranger featured in UNDER OUR SKIN and the author of the acclaimed naturalist book "Nature Noir," has written this open letter to the Infectious Diseases Society of America (IDSA), in response to the society's decision to make no changes to their controversial 2006 IDSA Lyme Disease guidelines.
To the Infectious Diseases Society of America:
Almost twelve years ago, I was bitten by a tick at work, and contracted Lyme Disease and Babesiosis. Because of the job you've done at diminishing the perception of danger about tick-borne disease and pressuring doctors who treat it aggressively out of business, it took a year and a half and a nationwide search to find a doctor who would treat me.
By then I was dreadfully ill, and as a result I lost my job and my 21-year career. In my first year of antibiotic treatment I got worse. I pursued aggressive treatment for another six years, during which time I got steadily, if slowly better. During this time one of my two doctors was forced out of practice as a result of your work. Thanks to my heroic physicians, I am recovered after a nine-year battle with tick-borne disease. And I am now contributing to society, working, and raising my kids.
Your ineffectiveness and the extent of your compromise with the insurance and HMO businesses are noted. You and your work will be forgotten eventually, as we have forgotten the names of the opponents of Copernicus. Shame on you for the suffering you are causing on the way to your eventual obscurity as prideful scientists who called it tragically wrong. The monument to your life's work is an unchecked epidemic.
-Jordan Fisher Smith, recovered victim of tick-borne disease
The reevaluation of the IDSA Lyme guidelines was driven by an antitrust investigation led by Connecticut Attorney General Richard Blumenthal. During his 17-month investigation, Blumenthal found substantial conflicts of interest among the 2006 guidelines authors, who held commercial interests in Lyme-related diagnostic tests, vaccines, and insurance. In addition, he found that this panel had suppressed scientific evidence and excluded opposing views.
Lorraine Johnson, CEO of the Lyme patient advocacy group California Lyme Disease Association (CALDA), questions the integrity of the evaluation, saying that the IDSA "stacked the panel, paid the ethicist, ran the process, and achieved a foregone conclusion which 'validated' their guidelines."
The Connecticut Attorney General Richard Blumenthal is currently reviewing the IDSA Lyme report to determine whether the IDSA has violated the Settlement Agreement.
If you would like to submit your feedback on how the IDSA Lyme disease guidelines have affected you and/or your family, emails can be sent here:
To send a copy to the IDSA leadership:
Richard Whitley, MD, IDSA President: firstname.lastname@example.org
Diana Olson, IDSA VP of Communications: email@example.com
James M. Hughes, MD, FIDSA, IDSA President-Elect: firstname.lastname@example.org
Mark A. Leasure, IDSA Chief Executive Officer: email@example.com
Carol J. Baker, MD, IDSA Lyme disease panel chair: firstname.lastname@example.org
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[here below-- resolution that passed overwhelmingly in bipartisan fashion in our County Legislature last July 13th: 22 to 3 (8 of 11 GOP voting will all in Dem caucus)-- for health insurance coverage for Lyme]
RESOLUTION NO. 209236
RE: MEMORIALIZATION IN FAVOR OF A STATE LAW ENSURING INSURANCE COVERAGE FOR VICTIMS OF CHRONIC LYME DISEASE
Legislators TYNER, GOLDBERG, NASH, FETTES, FLESLAND, KUFFNER, WEISS, WHITE, HORTON, MANSFIELD, MCCABE, MACAVERY and BORCHERT offer the following and move its adoption:
WHEREAS, according to a Poughkeepsie Journal editorial May 1st, "New York leads the nation in the number of Lyme disease cases (more than 27,000 reported in 2007); Dutchess County accounts for roughly a quarter of those diagnoses, and has the third highest number of new infections of any county in the country," and
WHEREAS, according to the same editorial, "caused by a bacterial infection from the bite of a deer tick, Lyme may cause debilitating symptoms affecting a person's skin, nervous system, heart and/or joints," and
WHEREAS, current law does not specifically stipulate that Lyme Disease and other tick borne related pathogens be covered under individual and group health insurance policies or workers' compensation, and
WHEREAS, A.2100, state legislation, would require that Lyme disease here in Dutchess County and across New York be covered under the aforementioned insurance policies, and
WHEREAS, A.2100 also specifically states that long-term treatments of the disease be covered if so recommended by a physician licensed to practice in New York State, and
WHEREAS, Lyme Disease strikes many New Yorkers each year; A.2100 would ensure that their pain and suffering is not complicated by a lack of medical coverage, including long term coverage, for care of the disease, now, therefore, be it
RESOLVED, that the Dutchess County Legislature requests that our state assembly pass and Governor Paterson sign into law A.2100, to make sure that Dutchess County and New York State residents afflicted with chronic Lyme disease are covered under individual or group health insurance policies, and, be it further
RESOLVED, that the Dutchess County Legislature requests that our state senate draft a companion bill to A.2100 and pass that bill, and, be it further
RESOLVED, that a copy of this resolution be transmitted to Governor David A. Paterson, Senators Stephen M. Saland and Vincent Leibell, Assemblymen Joel M. Miller, Kevin Cahill, Greg Ball, Marcus Molinaro, and Frank Skartados.