CENSORED
TBDWG Testimony- June 4, 2019
July 24, 2019
After several back and forth emails asking the TBDWG why my testimony was not published in the Comments Section on the TBDWG wesite, along with others that had been, and many that hadn't, and having to have HHS legal counsel review my comments before posting, the comments from everyone were finally shared on the TBDWG website.
My testimony was censored in several places, marked as "redacted" by the TBDWG leaders. This is the redacted version, with the censored parts shared below this chopped up rendition of my original work.
Lucy Barnes
TO: Tick Borne Disease Working Group
Elephants In The Room- A long-time employee of National Institutes of Health- the mouthpiece for a group of federal employees and IDSA members and their supporters- publicly stated sick Lyme patients, volunteer educators, non-profit support groups/organizations, labs, legislators and those who treat people with the chronic form of Lyme and tick borne diseases are:
QUOTE- "Disorganized, antagonistic, vindictive, back-biting, fratricidal groups, conspiracy nuts, and any number of certified mental patients acting as self-appointed Movement spokespersons.” [NIH] https://sites.google.com/site/edwardmcsweegan/quotes
And They All Lived Together In A Little Crooked House- For decades, members of the Lyme community have been relentlessly targeted, stalked, mocked, slandered, harassed, discredited and even physically threatened by some of the people paid to oversee the science and research into Lyme and tick borne diseases. Some have been funded with taxpayers dollars while doing so.
QUOTE- "It’s been a busy week in LymeLand. There must have been some kind of nuthouse furlough recently because three Lymee wackjobs have just dumped a load of nonsense into the Internet, which in all fairness is basically what the 90% Internet is—a digital landfill for the mentally ill, the conspiracy-minded, the juvenile, and the criminal." [NIH]
These egregious statements and actions by a group of federal employees, Lyme grant recipients and others have gone unchecked for over 30 years and continue today.
QUOTE- "Below is a list of conference “faculty” for an upcoming meeting of the ILADS, a group of like-minded quacks preying on people who think they have a chronic, incurable bacteria infection otherwise know to the saner world as Lyme disease. If the roof of the conference room was to fall in, it would put an end to a large amount of quackery in the U.S., save many people from financial ruin, and lessen the workload of numerous state medical licensing boards." [NIH]
QUOTE- "... and these LLMDs and ILADS guys are charlatans and quacks, and are a general threat to the health and wealth of their patients. ... he’s just as delusional as the chronic Lyme activists.” [NIH] https://sites.google.com/site/edwardmcsweegan/quotes
QUOTE- "Doctors (and quacks) are in control....right up to the point where they kill, injure or rob someone." [NIH] https://sites.google.com/site/edwardmcsweegan/quotes
Senator Blumenthal, while serving as the CT Attorney General, was also targeted. On May 1, 2008, after conducting a lengthy investigation into the 2006 IDSA guideline authors, he reported he uncovered, in part, the following serious Lyme related problems:
QUOTE- "The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.”
QUOTE- “My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.” [AG Blumenthal]
IDSA panelists were also called out by the AG for basically cheating, lying and chasing away those who don’t ride on the same Lyme train so to speak.
QUOTE- “The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman [redacted], who held a bias regarding the existence of chronic Lyme, to handpick a like minded panel without scrutiny by or formal approval of the IDSA's oversight committee... The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus"...” [AG Blumenthal]
QUOTE- “The IDSA portrayed another medical association's Lyme disease guidelines [American Academy of Neurology] as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.” [AG Richard Blumenthal, CT] https://web.archive.org/web/20170319133146/http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284
In retaliation the federal employee attacked officials multiple times. Examples:
QUOTE- “No, I think Blum [Attorney General Richard Blumenthal, CT] has demonstrated that he’s just another crooked pol ... He’s a media-addicted clown who will temporarily pursue any cause for a few minutes of television time. He’s a bad politician and a bad lawyer.” [NIH]
QUOTE- "Congressman Chris Smith (R-NJ) must have a lousy staff. He’s hosting a forum on Lyme disease and other tick-borne infections for his constituents this week." [NIH]
To date, attempts to get someone to address this unacceptable situation has been thwarted by IDSA, CDC and their supporters. For example, IDSA members actively approach anyone they believe might have some clout and feed them biased, self-promoting information (personally and in writing) in an attempt to quash all opposing points of view and scientific conclusions. Example- every Lyme related bill has been fought using two known methods- hand feeding those who might jump on their wagon, and viciously attacking those who don’t.
QUOTE- “So, yes, I think the new Administration, the new congressional committee chairs, the new OSTP staff, science advisors such as former NIH Director Harold Varmus and incoming FDA Administrator Peggy Hamburg are very aware of the “serious conflicts and scientific misstatements” characteristic of Lyme activists and their quack physicians.” [NIH]
QUOTE- "She sounds a lot like the equally agitated, white, blue-collar, unemployed people who show up at tea party rallies to foam at the mouth.” [NIH] https://sites.google.com/site/edwardmcsweegan/quotes
The biased, out-of-control federal grantors and benefactors over the years have been so anxious to crush any other points of view they’ve resorted to volunteering their services to government employees in order to do harm to others.
[redacted]- Dr. Lawrence Zemel
in Connecticut, for example, in a letter dated 9/14/93, offers advise on how to destroy a Lyme treating doctor’s reputation. Guilty of anything or not, these kinds of actions cost unsuspecting doctors tens of thousands, to millions of dollars in legal fees, with sanctions and the additional losses of their licenses.
[redacted],- Zemel
as noted below, gladly shares his expertise- attacking doctors- with the CT Department of Health staff:
QUOTE- “Have one of your staff investigators pose as a patient, complete with vague symptoms and negative Lyme results but insisting she have Lyme Disease. I would be happy to rehearse that investigator.” … “Examine insurance records of some of the major carriers in the state to see if he is a consistent outlier in terms of duration of home intravenous therapy.” … “Examine records of patients treated over the past few years for Lyme Disease to see if they truly fulfill established criteria for Lyme Disease.”
[redacted]- Lawrence Zemel, CT
There are thousands of examples of public statements made by this group over the years against the Lyme community and its efforts, some supported by federal grants.
QUOTE- “What is it about white, middle-class, college-educated, middle- aged women that compels them to use a common infectious disease as the vehicle for their emotional and psychological problems? Why the endless lies and absurd street theater? Why are the spokespersons and leaders of the Lyme Movement mostly former mental patients, former felons, and belligerent, paranoid egomaniacs?” [NIH] https://sites.google.com/site/edwardmcsweegan/quotes
QUOTE- "Maybe this person is a recent immigrant with an imperfect command of written English. Or maybe he/she is just a nut. Probably the latter." [NIH]
QUOTE- "Wow. Marylanders must be the dumbest people in the U.S. So who’s the audience for this pathetic propaganda?” [NIH]
QUOTE- "... do we cheer for the scum-bag personal injury lawyers or for the deluded patients? I had to go with the scum-bag lawyers— after all, it’s not the fault of the lawyers. They’re just acting out their nature like a shark or a mamba or some other dangerous predator.” [NIH]
This small, but vicious vocal group, includes federal employees who have served as their main mouth pieces. Even today they continue to publish these kinds of statements.
[redacted] - One of them is Edward McSweegan who was employed as the program officer for Lyme disease research at the National Institute of Allergy and Infectious Diseases at NIH. He is also listed as a coauthor on many of his group member’s so-called “scientific” Lyme related publications. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870558/
QUOTE- “As a result of such close interactions, many of us have become better acquainted not only with each other, but also with scientists who actually do the research that is funded by grants from the NIH and other government agencies. As Program Officer for NIAID’s Lyme Disease Basic Research Program, I managed the grants and therefore had personal contact and direct interactions with almost every well-known and accomplished scientist doing research on Lyme disease...”
[redacted]- [Baker]
https://www.aldf.com/pdf/Poughkepse_Journal_Letter_to_the_Editor.pdf
QUOTE- “About 2-3 years before I became Program Officer for the National Institute of Allergy and Infectious Diseases’s (NIAID) Lyme Disease Basic Research Program, the U.S. Congress mandated that NIH establish an NIH Lyme Disease Advisory Panel to facilitate the exchange of information and the development of co-operative interactions between those institutes of the NIH that support clinical studies and basic research on Lyme disease; representatives from the CDC and the FDA also were invited to serve on this panel….”… “Therefore, it should not be surprising to discover that the NIH, CDC, and FDA work closely together on Lyme disease…”
[redacted]- [Baker]
While admitting they have been working closely together, he continues to discredit sick patients.
QUOTE- “To characterize such individuals [Lyme patients] as “loonies” might be too kind of a description.”[NIH]
Sincerely,
Lucy Barnes, Director
Lyme Disease Education and Support Groups of Maryland
The TBDWG rules prohibit having embedded links to supporting information not published on a govt. website. The information/quotes above can be confirmed by outside sites if needed, AND, by way of the federal Energy and Commerce Committee’s website, however, their link is currently broken. Please contact them for an updated link at: cures@mail.house.gov
21st Century Cures: White Papers and Public Feedback 21st Century Cures: Patients - PDF (May 16, 2014) Respondents (Responses 29-32) https://archives-energycommerce.house.gov/cures-whitepapers
[redacted]- Those who should NOT be considered for the TBDWG, or be permitted to disseminate or receive grants include the following who have been, according to their own lists/words, working together and directly involved in this deplorable situation (more names on request).
Henry M. Feder, Jr., M.D.- Univ. of Connecticut; Barbara J.B. Johnson, Ph.D.- CDC; Susan O'Connell, M.D.- United Kingdom; Eugene D. Shapiro, M.D.- Yale Univ.; Allen C. Steere, M.D.- Mass General Hosp.; Gary P. Wormser, M.D.- NY Medical College. Ad-Hoc Members- Gundersen Lutheran— W.A. Agger; Health Canada— H. Artsob; Johns Hopkins— P. Auwaerter, J.S. Dumler; St. Luke's Hosp.—J.S. Bakken; Yale Univ.— L.K. Bockenstedt, J. Green; NY Medical College — R.J. Dattwyler, J. Munoz, R.B. Nadelman, I. Schwartz; Danbury Hosp.— T. Draper; NIH— E. McSweegan; NY Univ. School of Medicine—J.J. Halperin; Boston Univ.— M.S. Klempner; Univ. of Connecticut — P.J. Krause; CDC— P. Mead; Univ. British Columbia— M. Morshed; Robert Wood Johnson—R. Porwancher; Univ. of Connecticut— J.D. Radolf; Maine Medical Center— R.P. Smith, Jr.; Schneider Children's Hosp.— S. Sood; Georgetown Univ., Washington, DC — A. Weinstein; NY State Department of Health — S.J. Wong; Univ. of CT — L. Zemel.
https://www.ncbi.nlm.nih.gov/pubmed/17914043
2000 Guidelines- David T. Dennis (CDC); Thomas J. Rush; Daniel W. Rahn; Patricia K. Coyle; David H. Persing; Durland Fish; Benjamin J. Luft.
https://www.ncbi.nlm.nih.gov/pubmed/17914043
ALDF- Maria Aguero-Rosenfeld. M.D.; Alan G. Barbour, M.D.; Red Pfohl; Robert Proctor; Maria Diuk-Wasser, Ph.D.; Linden Hu; Adriana Marques, M.D.; Scott Samuels; Robert T. Schoen, M.D.; Daniel E. Sonenshine, Ph.D.; Leonard Sigal; Jean Tsao, Ph.D.
https://www.aldf.com/about-us/
Link to TBDWG Comment Section
Censored were the following sections...
[redacted]- Lawrence Zemel, CT
[redacted]- Dr. Lawrence Zemel
[redacted],- Zemel
[redacted] - One of them is Edward McSweegan who was employed as the program officer for Lyme disease research at the National Institute of Allergy and Infectious Diseases at NIH. He is also listed as a coauthor on many of his group member’s so-called “scientific” Lyme related publications. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870558/
[redacted]- [Baker]
https://www.aldf.com/pdf/Poughkepse_Journal_Letter_to_the_Editor.pdf
[redacted]- [Baker]
[redacted]- Those who should NOT be considered for the TBDWG, or be permitted to disseminate or receive grants include the following who have been, according to their own lists/words, working together and directly involved in this deplorable situation (more names on request).
Henry M. Feder, Jr., M.D.- Univ. of Connecticut; Barbara J.B. Johnson, Ph.D.- CDC; Susan O'Connell, M.D.- United Kingdom; Eugene D. Shapiro, M.D.- Yale Univ.; Allen C. Steere, M.D.- Mass General Hosp.; Gary P. Wormser, M.D.- NY Medical College. Ad-Hoc Members- Gundersen Lutheran— W.A. Agger; Health Canada— H. Artsob; Johns Hopkins— P. Auwaerter, J.S. Dumler; St. Luke's Hosp.—J.S. Bakken; Yale Univ.— L.K. Bockenstedt, J. Green; NY Medical College — R.J. Dattwyler, J. Munoz, R.B. Nadelman, I. Schwartz; Danbury Hosp.— T. Draper; NIH— E. McSweegan; NY Univ. School of Medicine—J.J. Halperin; Boston Univ.— M.S. Klempner; Univ. of Connecticut — P.J. Krause; CDC— P. Mead; Univ. British Columbia— M. Morshed; Robert Wood Johnson—R. Porwancher; Univ. of Connecticut— J.D. Radolf; Maine Medical Center— R.P. Smith, Jr.; Schneider Children's Hosp.— S. Sood; Georgetown Univ., Washington, DC — A. Weinstein; NY State Department of Health — S.J. Wong; Univ. of CT — L. Zemel.
https://www.ncbi.nlm.nih.gov/pubmed/17914043
2000 Guidelines- David T. Dennis (CDC); Thomas J. Rush; Daniel W. Rahn; Patricia K. Coyle; David H. Persing; Durland Fish; Benjamin J. Luft.
https://www.ncbi.nlm.nih.gov/pubmed/17914043
ALDF- Maria Aguero-Rosenfeld. M.D.; Alan G. Barbour, M.D.; Red Pfohl; Robert Proctor; Maria Diuk-Wasser, Ph.D.; Linden Hu; Adriana Marques, M.D.; Scott Samuels; Robert T. Schoen, M.D.; Daniel E. Sonenshine, Ph.D.; Leonard Sigal; Jean Tsao, Ph.D.
https://www.aldf.com/about-us/
Last Updated- July 2019
Lucy Barnes
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