If you have ever had any doubt that the U.S. government might not be telling you the whole truth regarding illnesses from environmental exposures, this amazing piece of investigative journalism from the Poughkeepsie Journal by Mary Beth Pfeiffer should calm your fears….You’re not crazy or some conspiracy theory nut!  They aren’t telling you the truth!

 “I will certainly miss all of you people – the scientists,’ Phillip Baker, the [NIH] Lyme program officer, wrote a colleague in 2007 at the U.S. Centers for Disease Control and Prevention, ‘but not,’ he said, ‘the Lyme loonies.”

Poughkeepsie Journal, “Chronic Lyme disease: Is it real? Officials say no, but some patients say yes – and demand a say” by Mary Beth Pfeiffer

Here’s the gist of the problem.  Some university guys in the private sector came up with this test for Lyme Disease that says these illnesses cannot be chronic and any doctor who says they can, is a danger to society.  They later won millions in research grants from the US Federal government. “In one case, an official in the CDC was chosen to share a prestigious byline on a chronic Lyme article by a leader in the science group, who received significant funding from the agency.”

According to their test, Chronic Lyme Disease (CLD) does not exist.  They got a medical association, the Infections Disease Society of America (IDSA) to legitimize their test science by making it a position portrayed to be the scientific understanding of thousands of physicians.  The federal government mass marketed it into public health policy as “Evidence Based Medicine”. They got it published in a leading medical journal to lend credibility.

So, as we understand it, based solely on this one test being mass marketed into policy, people claiming severe illness from CLD are unable to get medical treatment from U.S. physicians. Insurers will not pay for treatment of their long term illnesses that “do not exist”.  Physicians who treat CLD are ostracized and harassed by medical boards.

Emails were obtained and yet another article was written regarding how environmental science in the US is sometimes not based on science at all. (and this one is a really good article!) It’s sometimes based on who you know, not what you know.  Retaliation for saying so can be fierce when who those in the know, know, are in key positions in the United States federal government.

This article is about Chronic Lyme Disease.  It could just as well be about vaccines, biocontaminants in water damaged buildings, asbestos, formaldehyde, genetically modified foods, agent orange or any other environmental health threat where money is to be saved or made by feigning ignorance of even the plausibility of causation of chronic, debilitating, inflammatory environmental illnesses.

Those in key positions of the US government aid to keep the denying science in public health policy and provide funding for it to be taught in medical schools via “nonprofit” medical associations — while promoting that people claiming chronic illnesses from environmental exposures are not physically sick.  They and their doctors are bothersome loons who just need to quit bugging their government and go take a chill pill (as the environmentally sick and their children’s lives are being devastated and sometimes lost).  

For those of you who follow the mold issue, this story is quite similar to what has occurred to deny liability for causation of chronic, long term, debilitating, inflammatory illness from exposure to biocontaminants, primarily toxins, in water damaged buildings with the aid of the US government and their well connected private sector medical association friends and government contractors. (and the severely compromised California courts who are aiding to keep some seriously flawed US government, environmental risk assessment policies all under wraps by criminal means – but that’s another story).

Eery similarities between the Poughkeepsie Journal expose’ by Ms. Pfeiffer and the January 2007 Wall Street Journal article: Amid Suits Over Mold Experts Wear Two Hats, Authors of Science Papers Also Serve For The Defense In Mold Litigation by David Armstrong, help to illuminate a disturbing pattern.  

There is a back story here, too.  It took FIVE YEARS for a Freedom of Information request by film maker, Kris Newby, to be fulfilled by the CDC. What arrived were hundreds of whited out documents with many documents not produced.

FOIA request to CDC took five years to fulfill

View some cool “who is connected to who” charts and the CDC FOIA emails by clicking on the red text

The following are some of the quotes in the Poughkeepsie Journal article that tell a story of great disdain and lack of concern for the environmentally ill by what appear to us to be genuine pompous asses in the US government who are paid with YOUR tax dollars to keep you safe from plausibly occurring environmental exposures and long term illnesses. 

We highly suggest the Poughkeepsie Journal article be read in full to grasp the impact of too cozy of relation$hip$ between the well connected $cienti$t$ and phy$ician$ in medical $chool$ and medical $ocietie$ acro$$ the U.$ and $ome of their counterpart$ in the federal government. 

We fully acknowledge there are many in the US government who are trying to do the right thing for the public – in an era where even Associated Press journalists must fear that their communications are being intercepted by the powers that be. 

Some of our favorite quotes from the Poughkeepsie Journal nine page article:

 ‘I will certainly miss all of you people – the scientists,’ Phillip Baker, the [NIH] Lyme program officer, wrote a colleague in 2007 at the U.S. Centers for Disease Control and Prevention, ‘but not,’ he said, ‘the Lyme loonies.’

Baker’s appraisal – culled from 3,000 pages of documents obtained under the Freedom of Information Act and provided to the Poughkeepsie Journal — summed up in two words what physicians and scientists who challenge official policies on Lyme disease are up against.

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On the other: prominent Lyme scientists who authored the treatment guidelines — and reject the term chronic — backed by the might and, moreover, money of the National Institutes of Health and Centers for Disease Control. NIH and CDC officials insist they endorse the guidelines of the Infectious Diseases Society of America.

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But an exclusive Journal review of government emails suggests battles have been won, and minds swayed, through a combination of behind-the-scenes maneuvers and long-standing connections between the scientists’ group and government officials. These ties, some say, have served to keep competing ideas at bay.

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‘Evidence-based’

CDC and NIH officials defended their working relationships with the Lyme scientists as proper in every case and beneficial to public health. “CDC, NIH, and IDSA share a common goal of protecting patients and promoting evidence-based medicine,” said Charles “Ben” Beard, CDC’s bacterial diseases chief for vector-borne diseases. [We call this “Iffy Based Medicine”and we think it’s kind of funny in a black comedy sort of way that the CDC has a “Beard” speak for them!]                                                            

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“These medical associations are very likely to be run by people with a lot of connections with counterparts at the CDC,” said Robert Higgs, a senior fellow at the Independent Institute in Oakland, Calif., a nonprofit research and education organization, who has published on peer review and scientific research. While such an association may not be “intrinsically unethical,” he said, “it creates the potential for unethical action.”

Ethics rules state that federal employees should not give “preferential treatment” to private groups, and officials denied they showed any favoritism. At the heart of the vitriolic battle over Lyme disease are Lyme treatment guidelines of the Infectious Diseases Society that have been posted on the CDC’s web site since 2005 and say that Lyme is a highly treatable disease. Said Beard: “(T)he IDSA guidelines represent the best and most thorough synthesis of the medical literature currently available.” [There’s that CDC Beard again!]

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While symptoms may continue for some, CDC holds they are unrelated to live infection. But physicians who specialize in treating Lyme disease dispute that view. They fault the Lyme test, question whether a maximum of 28 days of antibiotics is enough, and believe some patients suffer persistent infections — chronic Lyme disease — possibly as the organism adapts to treatment.

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“Their argument that they merely advocate ‘evidenced-based science’ is specious and selective,” Pat Smith, president of the Lyme Disease Association, a national Lyme research and education group, said of the CDC. “Decisions about care need to include the perspective of the treating physician and input from the patient.”

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And though 1,200 pages of the documents were completed whited out, the emails demonstrate the strength of ties between government officials who set Lyme policy and oversee research budgets, and scientists in the Infectious Diseases Society, whose Lyme guidelines have dictated the care of Lyme patients in America.

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Connecticut Attorney General Richard Blumenthal, now a U.S. senator, charged in 2008 that the panel was rife with conflicts — with members having “financial interests” in Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies,” he said — and was biased “against the existence of chronic Lyme.”

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NIH’s Baker worked behind the scenes to defeat federal legislation in 2005 that would provide more money for Lyme disease research and establish a Lyme task force. In a Nov. 4 email, he offered pointers to the chief author of the Lyme guidelines, Dr. Gary Wormser of New York Medical College in Westchester County, “that might be of value in making your case” against the bill; a Wormser email called the bill a way “to insinuate the CLD (chronic Lyme disease) advocates into an oversite (sic) position.”

                                                        …………………….

In 2007, Baker and Barbara Johnson, CDC’s molecular biology chief for vector-borne diseases, arranged an invitation-only conference to determine research priorities on the contentious issue of Lyme tests, soliciting a list of invitees from a leading author of the Infectious Diseases Society Lyme guidelines, Raymond Dattwyler. Dattwyler, named as co-organizer of the government-paid meeting, had founded a company in 2001 with a goal of marketing Lyme tests; records show the company received $3.5 million in NIH research grants for Lyme tests since 2007.

CDC’s Beard said the scientist’s “extensive publications” on Lyme testing justified his participation…..The group’s mission was to “promote evidence-based” science on Lyme disease — and with it the society’s own guidelines. Beard said, “CDC employees routinely serve as federal liaisons to medical societies,” adding attendance was ‘considered to be an official duty.’ [“CDC’s Beard” said what?? We’re not aware of them having liaisons with ALL medical societies.]

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CDC has been key to promoting the society’s guidelines; the agency posts a link to them on its web site, accessed by thousands of physicians, and publicly endorses them. Beyond the professional benefits of CDC endorsement, the CDC also provides funding to the scientists.

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The documents show Johnson emailed in 2002 and 2003 with Wormser on grants he had sought from CDC, once telling him, “You should get the funds fairly soon.” Wormser was principal investigator on a $311,000 grant from CDC that year, part of $1.5 million in such grants since 2001, records show. [NIH distributed $112 million in research grants from 2009 to 2012.]

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In 2007, emails show Baker attempted to remove opposing Lyme guidelines from a federal web site known as the National Guidelines Clearinghouse even though they had been approved for posting, along with the Infectious Diseases Society’s. In his email to the clearinghouse administrator, Baker said the guidelines were inconsistent with NIH trials showing that prolonged antibiotic treatment does not work.

“(T)his latest gesture is much appreciated,” the CDC’s Johnson, a microbiologist and Lyme test expert, wrote in apparent response to the proposal, adding, “I am certainly with you.”

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The scientist did not “want to be identified with either side of the controversy,” and, like others, said it was difficult to obtain government research funding for scientists with alternate theories.

Bulk of grants

Indeed, Yale University and New York Medical College, home to eight of 14 [IDSA] guideline authors, placed first and second in research awards, receiving a combined $34 million since 1997, federal records show. Biopeptides Inc., the company founded by Dattwyler, the conference planner, received more than $5 million and placed tenth among 54 institutions that received at least $1 million.

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In an October 2007 email, Durland Fish, a Yale researcher and guidelines author, writes,

“This battle cannot be won on a scientific front. We need to mount a socio-political offensive; but we are out-numbered and out-gunned.” [Out- numbered by whom? Physicians who are stating this is a real problem?]

…..it isn’t known what was in pages that were whited out, including some 700 that, officials said, comprised internal communication that if divulged “would interfere with the agency’s deliberative process.”

                                                       …………………..

In a May 2007 email with “New Lyme book” in the subject line, Baker told several dozen IDSA scientists, “The best use for a book like this is to line the bottom of a bird cage.” In his statement, Baker said the book was filled with “misinformation and false assumptions.”

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“(O)nly individuals with well-documented experience (peer reviewed publications) in the development of diagnostic procedures and/or in assessing their strengths and limitations were invited to participate,” [Baker] wrote. “I have no doubts that all of the right people were invited.” [ALL the right people???? Meaning those who speak for those claiming delibilitating, chronic illness are the wrong kind of people?]

Baker’s alliance with the Disease Society continued after he left NIH in the fall of 2007. In May 2008, he was named unpaid executive director of the American Lyme Disease Foundation, a nonprofit patient-advisory group where four of seven current board members are authors of the contested Lyme guidelines. He maintained, “I do not work for the IDSA, nor am I compensated in any way by the IDSA.” [Question: What else does Baker do in retirement from his government job?  Does he ever provide expert witnessing services over the lyme issue? Who funds the American Lyme Disease Foundation?]

Significantly, the foundation’s web site includes a description of the 2007 conference on Lyme tests. It asserts that scientists “were in agreement” [Huh? We thought they were out-numbered?] that the standard Lyme test, known as the two-tier test, “has generally worked well.” That is a conclusion at odds with the experience of many leading Lyme physicians, who believe many cases of Lyme disease are missed by the test but were not invited to attend.

“It’s a relatively small group who seem to have control,” said Dr. Daniel Cameron, a Westchester County Lyme physician and past president of the opposition Lyme society. “That system keeps most of the funding channeled to the same doctors who are grading the evidence.”

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“The CDC guidelines are part of the problem,” said U.S. Rep. Chris Gibson, R-Kinderhook, and a sponsor of the bill, who said he is routinely “grabbed by the arm and told what a public health scourge” Lyme disease is.

“This,” he said, “is real.”

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 Read the Poughkeepsie Journal article by Ms. Pfeiffer in its entirety, view the links to the emails and view the documentary by Kris Newby at:  http://www.poughkeepsiejournal.com/apps/pbcs.dll/article?AID=2013305190007

From dealing with the mold issue for many years, we understand that all the United States government has to do to save many lives is get the information out to US physicians and health departments that Chronic Lyme Disease is plausibly occurring. This is so people and physicians would know to explore this as a possible cause of idiopathic new onset of symptoms before the illness possibly becomes severe and debilitating. 

We happen to know that up until now, the U.S. government will not do this minor,  life saving, precautionary, act when it comes to warning the public of an environmental exposure possibly causing chronic, systemic, debilitating, inflammatory illness — if it means they have to name a probable environmental cause, even by directive of the Federal Government Accountability Office.

And look out if you ask them to! You can be retaliated against, framed for malicious libel via the use of perjury by government contractors and jailed in this country for asking the U.S. government to remove naysaying, scientific fraud from environmental health policies!

Sharon Noonan Kramer,  Co-author of “American College of Occupational and Environmental Medicine (ACOEM): A Professional Association in Service to Industry” International Journal of Occupational and Environmental Health