Complaint Filed on Behalf of Lyme Patients &
Treating Doctors Everywhere
~~~
Yale University
Eugene Shapiro, Durland Fish
Peter Krause, Linda Bockenstedt
October 8, 2011
Provost Peter Salovey
Office of the Provost
Yale University Medical School
Warner House Room 107
1 Hillhouse Avenue
New Haven, CT 06511
(203-432-4444)
Dear Provost Salovey,
I am writing today to report a highly questionable situation involving several people at Yale University; specifically, Eugene Shapiro, Peter Krause, Durland Fish and Linda Bockenstedt. I am asking that you please address the problems indicated below, and at the very least be sure the representatives and employees of your Institute are adhering to the policies described on Yale’s Office of the Provost website, which states:
“Yale faculty and staff should conduct themselves ethically, honestly, and with integrity in all dealings. They need to be fair and principled in their business interactions and to act in good faith in these matters with others both inside and outside the community.”
These individual’s interests and actions are conflicting with and compromising the University's core missions, and are also damaging to the patients Yale University serves, as well as people nationwide. Harassment, bias, conflicts-of-interest, and the denial of medical services by some of your people has progressed to the point law enforcement officials and members of Congress have had to intervene over the years to help protect the public from their actions. Since the situation has not improved substantially, and/or has digressed recently, I am asking that Yale administrators investigate and address these employees, and take a close look at Yale’s overall practices and policies as they relate to these individuals.
As you may know, Shapiro, Krause, Fish and Bockenstedt are members of the 2006 Infectious Diseases Society of America (IDSA) Lyme disease guideline panel (4 of 14 members from Yale). IDSA panel members were investigated by the Attorney General in Connecticut due to the increasing problems patients were experiencing with diagnosis, treatment and reimbursement for medical expenses. In May 2008, Attorney General Richard Blumenthal (currently US Senator) released a public statement regarding the members seated on the IDSA panel, indicating serious problems existed.
"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.”
Shapiro, Krause, Fish, Bockenstedt and colleagues failed, in the initial and review efforts, to create impartial, conflict-free, evidence-based guidelines. Moreover, the errors of the members of the guidelines panel were compounded by the review panel, which had an obligation to provide an unbiased review and right these transparent errors. Today, the conflicts still exist, the bias has been more pronounced, and retaliatory actions against sick and disabled patients, volunteer organizations and health care professionals has increased.
Small self-serving groups that Yale employees belong to, or direct, are allowing members to harass and degrade others, both publicly and privately, with some of the abuse coming directly from Yale personnel. For example, an article interviewing Fish states- “He proceeds down the list, name by name [of health care professionals]: "Totally bogus." "He killed one of his patients." "They tried to shut him down." Words like "crackpot," "wacko," "buffoon" and "fraud" pepper his discourse.” Yale’s employees should be held accountable for their direct and indirect involvement in and participation with what is totally unethical behavior.
An appropriate starting place for an investigation would be their association with the American Lyme Disease Foundation (ALDF), of which three Yale employees (Shapiro, Krause, Fish) are Board Members (3 of 7 total), and the Lyme Disease Ad-Hoc Committee (all 4 Yale employees are members of this small group) that publishes on Lyme disease issues. Members of the IDSA Panel and these two small groups, although they are few in number, overlap, with one seeming to be an extension of the other. They all hold and promote the same views and apparent mission- to discredit the competition in any way possible, while keeping their personal and financial interests in tact.
Yale’s policy states, “When conflicts of interest do arise, however, they must be recognized, disclosed, and either managed, reduced, or eliminated.” I am asking that you investigate and act accordingly, in line with your policy, on the above and other related issues.
Yale University has received millions of dollars to research Lyme disease over the years, with more than $300,000 in federal funding being awarded directly to Shapiro to perform research on Lyme disease. Bockenstedt has been awarded over 6 million in funding for Yale projects, with most recently a little over ¼ million going to Bockenstedt at L2 Diagnostics, LLC. Admitting he coached people over the years on “how to cheat” to avoid sanctions from government agencies, Durland Fish also received (along with Krause) over $300,000 for Lyme-related research. Fish benefits from federal Lyme-related grants, while publicly displaying extreme bias and hatred for others in the Lyme disease community, and doing so without sanctions from Yale University, which also benefits financially and in other ways.
When researchers already proven to have conflicts-of-interest are so obviously cynical and biased against issues they are suppose to be researching with an open mind, it shines a highly questionable light on their research results, and the authors scientific opinions, as well as Yale’s appropriate use of funds for projects. Shapiro, Krause, Fish, Bockenstedt and Yale University profiting from Lyme-related research and resulting products (patents, etc) on one hand, while its employees are blatantly abusing and discriminating against patients and a host of health care professionals on the other hand, is totally unethical.
According to section XX.E (b) of Yale’s Conflict of Interest and Conflict of Commitment policy- “No outside activity or financial interest of any member of the University community will be permitted to compromise the integrity of teaching, research, clinical care, and scholarship at Yale, to detract from the fulfillment of that member's fundamental obligations to Yale, or to compromise the welfare of Yale students.”
I am providing attachments indicating these employees and others have compromised the integrity of Yale, not only by their actions, but by their involvement and association with these small groups of like-minded people.
Yale University has regulations, very wisely so, addressing discrimination issues in their community, yet some of its employees are joined at the hip with people who have absolutely no respect for people or authority in general. Your policy states:
“The Yale community is diverse — in race, background, age, religion, and in many other ways. The personal actions of each community member establish and maintain the culture of tolerance and respect for which we strive. While principles of free speech remain paramount at Yale, faculty and staff should respect the rights and dignity of others regardless of their differences, and must conscientiously abide by the principles of nondiscrimination adopted by the University. Harassment along sexual, racial, or political lines has no place in our community.”
Tolerance and respect can not be established when Yale’s employees are closely involved with people/groups publishing libelous statements, such as- “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 are the spokespersons and leaders of the Lyme Movement mostly former mental patients, former felons, and belligerent, paranoid egomaniacs?” Or statements such as, "The host of this intellectual catastrophe is xxxx, (another Hungarian? Does anyone else miss the Berlin Wall?)". These attacks have been ongoing for over 15 years and are from the same sources.
As for Yale developing relationships with outside organizations and professionals nationwide, it is not difficult to see these types of published comments are not building any bridges in the scientific or medical world (names removed to prevent further abuse). "Xxxxxx is the immediate past president of that online gang of private practitioners who dabble in quackery and wackery. Quackery being the medical use of worthless potions and procedures, and wackery being the belief in and dissemination of wacky ideas."
Yale’s employees involvement, and worse yet, doing nothing to stop this abuse, sullies its image and is also not in accordance with its policies, which states:
“The fundamental premise of this policy is that each member of the Yale community has an obligation to act in the best interest of the University and in furtherance of the University's mission, and must not let outside activities or outside financial interests interfere with those obligations.”
A recent Lancet Journal article (9/2011) is the latest in a series of public and private attacks on sick patients, volunteer support groups and health care professionals. Those attempting to report this type of unacceptable conduct to authorities in the past have been stalked and harassed unmercifully. Patients with legitimate concerns about this behavior have been intimidated (bullied) and warned to not report the offenders (Example-Attachment #1.) Many have been tormented and some even threatened if they dare speak up. (Example- Attachment #2 & 3.)
The unethical behavior/actions and intimidation that has transpired over the past 15 years while this group of people have been working together to promote their personal agenda must cease and desist immediately. The retaliatory harassment must also be stopped.
Rather than reiterate many of the problems here, I am attaching a letter recently sent to the Lancet Journal (Attachment #4.), complete with references. Please review it and let me know if Yale University condones this sort of behavior from its employees and if not, what they plan to do to stop it.
Please note, I am not asking for you to address the scientific debate surrounding Shapiro, Krause, Fish and Bockenstedt’s stance that there is no such thing as “chronic Lyme disease”. The growing number of patient casualties I deal with on a daily basis, and the overwhelming scientific literature already indicates otherwise. Additionally, Shapiro’s solution, for example, of calming “parent paranoia” and simply giving patients what he feels they really want, “affirmation, sympathy and concern”, instead of a prescription for antimicrobials for known and unknown tick-borne bacterial infections in an endemic state, has contributed to a growing number of seriously sick, disabled and dying patients, which is being addressed in the scientific arena.
I am asking that you and your Institution set-aside the scientific debate for now and work on putting a stop to the ongoing abuse of people in the Lyme community so the unbiased scientific research can move forward, sick patients can be treated respectfully, and medical professionals can treat their patients without fear of retaliation from Yale employees and their colleagues/coauthors.
To summarize, I request that you:
1. Enforce the professional standards and ethics Yale University espouses with the offending parties and others as appropriate.
2. Sanction health care professionals and researchers who accept funding for tick borne diseases, then maliciously publish (or allow others to publish) against patients afflicted with the diseases and those assisting them.
3. Investigate whether Yale employees bias and conflicts of interest inhibits their ability to objectively research and treat tick borne diseases in afflicted patients.
4. Immediately instruct your employees to cease and desist with the abuse of patients, volunteer support groups and health care professionals.
5. Report your findings and the actions taken as a result, so I can assure sick patients this issue has been adequately addressed by Yale University authorities.
If you have any questions, please contact me using the email address below. I await your reply and appreciate your time. To note- references can be accessed by clicking on the underlined words throughout this document. Several attachments (1-3) are below. The examples used throughout this document only scratch the surface of the severity and sheer number of actual problems associated with this situation, but we have to start somewhere.
Sincerely,
Lucy Barnes
631 Railroad Avenue
Centreville, MD 21617
Attachment #1.- Email from a group member, Edward McSweegan, to a patient, addressing the patient’s request for information. The request was made of the Institute, yet it was intercepted by members of these various “groups”. The patient never received an official response to the inquiry, only this email. Edward McSweegan was once a Lyme disease program officer for the NIH, working with grants for Lyme research, until he was sanctioned and removed from that position for attacking Lyme patient groups. The NIH grant task then went to Phillip Baker, who is now current Executive Director of the American Lyme Disease Foundation (ALDF), which has 3 Yale employees on its Board of Directors (3 of 7 total Board members from Yale). Warning- Offensive language has not been edited out. [Edited by LB for public viewing]
From: Edward McSweegan <emcsweegan@verizon.net>
Subject: <no subject>
Date: October 12, 2007 1:31:14 PM PDT
To: (Name removed to protect patient from further abuse)
Hey, what the f*** is wrong with you?
First, you try to investigate Dave Whelan at Forbes. Then you call Hopkins about me? Did you think that Mark or Paul [Auwaerter] wouldn’t tell me some nut had called concerned about one of two typos in the acknowledgment section of a journal article?
Here’s some free advice: get some f***ing therapy before someone starts investigating you.
E.M.
P.S. Stay the hell out of my websites.
Attachment #2.- A member of the group, McSweegan, threatens patient Mary DeRose after she writes a rebuttal to his unfavorable review of her newly released book, in The Capital Newspaper, Annapolis, MD. In retaliation, McSweegan threatened to contact DeRose’s college, as seen in the email sent to her (below). He followed up with his threats, and shortly thereafter the patient was hit with another severe “blow”, the same kind that has happened to other patients who have tried to help people or have spoken out in some way.
McSweegan email to DeRose (MM Drymon): “I doubt the Congress has any interest in investigating what I do in my house after work. What I do at work has been investigated. Check with Senator Grassley’s office if you’re curious. If I was doing anything illegal or inappropriate, be assured that I can indeed be fired. I’m not a federal judge. I don’t have a lifetime appointment. Good luck with converting that ABD to PhD. Mind if I send a copy of your letter to your committee members? I still know a few profs at the U. of Maine, including a dean.”
DeRose was warned by others who have been stalked and harassed in the past to contact her Dean immediately and tell him to expect communications from McSweegan, which she did. The following day, true to form, McSweegan called DeRose’s PhD advisor to discredit her. DeRose later sent an email to a patient (LB) concerning the anonymous complaint filed with child protective services shortly after McSweegan contacted DeRose’s college. Several patients, mothers with sick children, have had anonymous complaints filed against them in the same manner (for treating children for Lyme disease).
DeRose wrote to volunteer patient support group leader: “It’s a long complex story but the CPS complaint made accused: my husband of sexual abuse and me of crackpot medical treatments for our daughter [I was sick when I was pregnant with her- hence a possible connection to the autism], so I'm pretty much cleared. My husband, however, was thrown out of our house with 20 minutes notice when the temperature was 7 degrees outside.
He ended up trying to sleep in his car but after about two weeks he gave up on trying to live with these false accusations. The CPS counts on your being so shamed and humiliated that you eventually just give in to whatever they say. He decided to kill himself instead.
My kids are 12 and 16-the oldest is just old enough that they can't take him away. It is my autistic 12 year old daughter that is at risk. She does not interview well because of her autistic mind and is bewildered by all this. In fact she never wants to be interviewed or have her body examined again now.
To quote: "All complaints are strictly confidential" but I now understand why he [referring to McSweegan] uses this tool. Once CPS gets involved all sense of due process is thrown out the window. Case workers can, after about half a day of interviews, make life altering decisions that can destroy a family for years to come. I can now fully understand the other women’s plights that he stalked.
My husband, who is a PTSD Vietnam vet to start out, has ended up attempting suicide and is now in a mental institution with his previously manageable mental illness converted into permanent schizophrenia. Last paycheck: last Thursday- income for foreseeable future $0. My 16 year old is now under suicide watch also and our daughter is just about destroyed. It seems that if you are accused and guilty you are guilty and if you are innocent you are also guilty.”
Attachment #3- Retaliation for attempting to report this ongoing situation in the past.
Quote from, “The Wacky World of Lyme Disease” (aka, the “Hit List”)
“What do you do about people like this? You can’t sue them; they don’t have enough money to make it worthwhile, and a defense of emotional or mental incompetence would probably be compelling. She thinks I exhibit “bizzare behavior” and “could be dangerous” so I just may have to content myself with stopping in Centreville to punch her in the face the next time I drive over to Rehoboth. Would that be considered bizarre behavior or just proof of being dangerous? Maybe I could just show up at the next meeting of her support group…
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 are the spokespersons and leaders of the Lyme Movement mostly former mental patients, former felons, and belligerent, paranoid egomaniacs?”
Source- https://sites.google.com/site/edwardmcsweegan/hit-list
Attachment #4- Letter to the Lancet
Lancet Editor Richard Horton
Lancet Infectious Diseases Editor John McConnell
IDeditorial@lancet.com
Lancet North American Senior Editor Maja Zecevic
Re: Antiscience and ethical concerns associated with advocacy of Lyme disease
Volume 11, Issue 9, Pages 713 - 719, September 2011 doi:10.1016/S1473-3099(11)70034-2. Dr Paul G Auwaerter MD a, Johan S Bakken MD, PhD c, Prof Raymond J Dattwyler MD d, Prof J Stephen Dumler MD b, Prof John J Halperin MD f g, Edward McSweegan PhD h, Prof Robert B Nadelman MD e, Susan O'Connell MD i, Prof Eugene D Shapiro MD j, Prof Sunil K Sood MD k, Prof Allen C Steere MD l, Prof Arthur Weinstein MD m, Prof Gary P Wormser MD e
Source:http://www.thelancet.com/journals/laninf/article/PIIS1473-3099(11)70034-2/fulltext?_eventId=login OR https://sites.google.com/site/idsaonlyme/antiscience-article
October 1, 2011
Dear Editors,
I am contacting you regarding the above referenced article ‘Antiscience and ethical concerns associated with advocacy of Lyme disease’, which states in its introductory paragraph- “The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.” Specific organizations reported in the Lancet article as being a “threat to public health” are further identified in the body of the article: “Many of these physicians are represented by the International Lyme and Associated Diseases Society (ILADS), located in Maryland, USA. Two of the most vocal patient-activist organisations are the Lyme Disease Association (LDA) in New Jersey, and the California Lyme Disease Association (CALDA), USA.”
I will, for now, disregard the inaccurate statements in the article regarding Lyme and tick borne diseases, a subject for another day. However, I feel it is important to address the fact the Lancet, with this article, may have inadvertently facilitated the continuing persecution of sick and disabled people and the doctors and patient groups that selflessly serve them. There has been an ongoing series of unethical attacks on patients by a small group of doctors supportive of or associated with the Infectious Diseases Society of America (IDSA), which includes some of its members, board members, long-time colleagues, and coauthors of this organization’s controversial Lyme disease guidelines.
Some of the authors of the Lancet article and other similar works have collaborated both publicly and privately in ways that adverselyaffect patients, including the exclusion of stakeholders of diverse viewpoints in policy and guideline determination. Those hurt by their actions include sick patients; mothers and grandmothers- many with sick children; chronically ill and disabled volunteers working from home and in local communities; brothers, fathers, and husbands reaching out in their neighborhoods; non-profit organizations; and a host of dedicated health care professionals who have kindly taken on the task of helping a growing and suffering population that has been harassed, ignored or abandoned.
Setting the Record Straight- Volunteer patient advocates are, for the most part, dedicated, hard working citizens making a positive difference in the lives of those who suffer. Many are simply trying to survive the every day struggles of dealing with a disease(s) that was originally misdiagnosed or inappropriately treated, causing ongoing or permanent damage to multiple organs and systems. Volunteers often have sick family members to care for, some with children unable to attend school for years and/or other pressing obligations, yet they find time to make significant contributions.
The Lancet authors complaining, "(a)ll this activity has led to the creation of a cadre of doctors and activists with their own institutions, research, and conferences, a dedicated pool of patients...”, which was meant to be derogatory, is actually true. As with all diseases, the more people working to prevent chronic illnesses, disability and death, or discover better diagnostic tools, or even a cure, and in the process can educate the public, the better. Stating these volunteer’s efforts pose a “threat to public health”, or that they are involved in an “antiscience movement”, or promote “pseudoscience” is far from accurate, makes no sense, and would not be in the individual or groups’ best interest.
Members of the Lancet article’s referenced organizations must, on a regular basis, carefully review the latest scientific research and clinical findings, and support new research if they are to regain their own health and continue on their mission to prevent others from suffering in the future. Patients’ lives depend on the science, consequently, organizations have a duty to promote best practices, provide access to unbiased and conflict-free scientific and medical viewpoints, and support patient and doctor autonomy. Anything less would be a disservice to all.
The Actual Facts- The Lyme Disease Association, Inc. (LDA) is an all volunteer, national non-profit 501(c)3, which is dedicated to Lyme disease research, education, prevention and patient support. Contributions to the LDA are tax-deductible, with a remarkable 95%-98% of the donations going directly to programs. The organization provides a free 24-hour phone information line, a free online doctor referral system, and has a staff of dedicated volunteers assisting as they are able.
LDA partners with various organizations, such as the EPA, to assist with educating health care professionals, government employees (including the military) and the public. LDA representatives have been invited to Washington DC to educate the Senate HELP Committee and speak with various House and Senate committees and members. They have educated many state legislators across the country, and provide in-service programs for nurses and teachers. LDA has a long list of corporate partners, scientific and professionaladvisory board members, a large umbrella with dozens of affiliated, associated and supporting Lyme-related organizations, and celebrity partners. In 2008, LDA President Pat Smith was personally honored with a Citizen of the Year Award. LDA affiliated support group leaders nationwide also receive a variety of awards for their volunteer services.
Over $5 million dollars has been raised by LDA, which helps fund nationwide tick-borne disease research projects, including scientific studies related to testing, treatment trials, mapping genomes of Borrelia strains, endocrine studies, tick-borne diseases in the GI tract, brain imaging, PCR studies, neuropsychiatric disease in children and adults, natural tick control measures, identifying organisms in ticks, immune complexes, infection rate of mammals, protein arrays, and more. Many of the scientific advances, made possible wholly or in part by LDA efforts, have been published in more than 20 peer-reviewed journals.
Recognizing the health of our children is a number one priority, the LDA, along with celebrity author Amy Tan, established a special fund in 2004 for uninsured and disadvantaged children. Lyme Aid 4 Kids provides up to $1,000 per child to cover the costs associated with diagnosis and treatment, and can be used by any physician nationwide. To date, LDA has awarded over $205,000 for the program. LDA provides free literature (approaching 2 million pieces) and a comprehensive website (18 million visits per year) that has helped educate countless people over the years. DVDs, books, tapes, power point presentations, video clips, maps, tick-removal kits, graphs, public service announcements, children’s video resources, and many educational tools have been created or sponsored by the LDA.
LDA, in conjunction with the Columbia University College of Physicians and Surgeons, and the International Lyme and Associated Diseases Society (ILADS) have, to date, presented at least 24 national and international scientific conferences for health care professionals, including offering CME credits. This year’s scheduled speakers include scientists, researchers and health care professionals from Johns Hopkins School of Medicine, A.I. Dupont Hospital for Children, Virginia Commonwealth University, University of Pennsylvania, University of California Berkeley, University of New Haven, George Washington University, Columbia University Medical Center, and a variety of medical centers, hospitals and private practices. Some of these happen to be the Lancet article authors’ affiliated institutions.
As in previous years, the highly successful LDA scientific conference has booked full in advance. Speakers this year are traveling to the conferences from Canada, Nova Scotia, Germany and at least 17 US states to share relevant and up-to-date scientific discoveries and clinical findings with health care professionals involved in the day-to-day care of patients.
The long-awaited Lyme and Tick-borne Diseases Research Center at the Columbia University Medical Center in NY was established on April 30, 2007 through a joint effort of Columbia University, Time for Lyme, Inc., and the Lyme Disease Association. The Centerrecently announced the purchase of a special freezer for the creation of a tissue bank, funded by the Lyme Disease Association.
The California Lyme Disease Association (CALDA), also a 501 c 3 non-profit, has an active outreach program to educate physicians and nurses by hosting booths at professional conferences and organizing medical conferences in collaboration with local health agencies. Its many members educate the public by setting up displays and distributing information at regional health fairs and community events. CALDA has worked cooperatively with public, private and government agencies over the years, providing support for education and advocacy efforts. The organization raises money for research and provides grants to health care professionals interested in tick borne diseases. CALDA provides the public access to educational literature, posters, and a comprehensive website.
The founder of CALDA, Phyllis Mervine, has served as its President since 1990, including as the editor-in-chief of the popular “Lyme Times”, a national publication geared toward educating both medical professionals and patients since 1989. CALDA members also share the latest news and information on tick borne disease by way of its popular blogs. CALDA is committed to evidence-based medicine and supports patients and professionals in crafting evidence-based health care policy.
The two organizations, with all 50 US states represented, actively support state and federal legislation designed to raise Lyme disease awareness, increase prevention efforts, and provide funding for improved diagnostic tools. In fact, some of the article’s authors received grants made possible in part by the efforts of these organizations, something they failed to mention in the referenced Lancet article. This omission is not terribly surprising, since nine of the Lancet article’s thirteen authors were also authors/editors of the controversial Infectious Diseases Society of America (IDSA) 2006 Lyme Disease Guideline Panel.
Some of these authors, along with their ardent supporters, have a history of trying to denigrate, silence or thwart efforts of those who do not support their “no chronic Lyme disease” theory. They feel after patients have received the IDSA recommended treatmentfollowing a tick bite, no additional testing or antibiotic therapy should be administered for ongoing, progressing, or recurring symptoms. Insurers often misuse the cost-effective IDSA guidelines to support decisions to deny patients coverage.
Doctors Exposed for Wrong Doings- In response to the growing number of chronically ill patients denied treatment and insurance coverage over the years, the Attorney General of Connecticut conducted an investigation into the Lyme disease guidelines development process. The investigation found members of the IDSA Lyme Disease Guideline panel were “biased” and riddled with “conflicts of interest”. AG Richard Blumenthal (currently U.S. Senator Blumenthal) stated on May 1, 2008, "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.”
The Institute of Medicine (IOM) later referred to the Attorney General’s investigation in its report, portraying the IDSA Lyme disease guideline development process as an example of how not to develop guidelines in the future. It was disappointing and disturbing for sick patients to see such a blatant disregard for human health displayed before, during and after the questionable IDSA Guidelinedevelopment process was exposed, and to discover official intervention was required in order to protect the public’s health.
Money Talks, Patients Suffer- Conflicts of interest have contributed to stagnation in Lyme disease research, which has been tightly controlled by several of the IDSA Lyme disease guideline authors (also Lancet article authors) and their colleagues for the last two decades.
Collectively, these researchers’ university labs have received over $130 million dollars in grants since 1990. As a result of the authors’ grant work (taxpayer funded), patients and doctors have been hampered by tests failing to detect as many as 75% of those infected.Research outcomes based on faulty testing have been used as a basis for preparing less than adequate diagnostic and treatment guidelines, and as a result, to deny treatment. Flawed testing also contributed to a short-lived vaccine’s removal from the market, and subsequent lawsuits were initiated on behalf of patients allegedly harmed. Problems stemming from the distribution of grant awards have contributed to a decades-long war that victimizes innocent patients and obstructs health care professionals from caring for them.
Over half of the grants were given to New York Medical College (3 authors of Lancet article) and Yale (1 author of Lancet article), including to support this group’s commercial interests in tick-borne disease vaccines, tests and other products. For example, New York Medical College researchers founded 5 test/vaccine companies in the last few years, claiming to address Lyme disease “by developing new, improved diagnostic tests and, in a truly ingenious approach, a vaccine…”
Justification for their decades long involvement with Lyme disease is stated on their website- “the battle against the insidious and debilitating infection continues unabated…”. The fact Lyme disease is described as “insidious” or debilitating when it is to the authors financial advantage, yet in the Lancet they criticize patients they allege refer to Lyme as “insidious” when it disables them, indicates the doctors/authors do understand the seriousness of the problem, however, their focus is not totally on patient health or welfare, but on what appears to be personal interests, which are compromising their medical and scientific judgment.
The lack of support for the author’s position in the scientific and medical community is evident, first by the fact some have resorted to publicly and privately attacking patients and doctors rather than addressing the scientific facts. Secondly, those reviewing the Lancet article references will note 68/70 citations consist of the author's own and/or related organizations products, random newspaper articles, websites they condemn, public documents, or non-Lyme related references.
Attacking Patients- The Lancet article, rife with false-hoods and innuendos, seems to be an extension of the ongoing disdain for patients, doctors and labs displayed in other public and private venues by supporters of the “no chronic Lyme” theory. Rather than basing the Lancet article on the science, as mentioned, it appears the authors once again gleaned information from patient online chat rooms, as noted in their reference section- “Obtained from popular Lyme disease websites…”, and then used the random comments to further belittle and criticize patients.
For example, articles referring to patients as “disorganized, antagonistic, vindictive, back-biting, fratricidal groups, conspiracy nuts, and any number of certified mental patients acting as self-appointed [Lyme] Movement spokespersons” serves no useful purpose. It only incites those suffering from a sometimes progressive, debilitating illness to respond; or, as is seen all too often, end it all. After being harassed, discriminated against (race, affiliation with groups, ethnic origin, sex, and age), threatened and denied medical carefor years on end, this is to be expected. The only patients not responding to the proverbial sharp sticks poking them through the walls of locked cage doors, bless their hearts, are the ones who didn’t survive this long ordeal- may they rest in peace.
For the Lancet to provide a platform to anyone with such self-serving and less than honorable motives simply enables the unrelenting abuse of patients and those attempting to assist them. Please see the attached document with a sampling of insensitive, racist, and offensive comments that have inundated and understandably provoked suffering patients over the years (“X-rated” language has not been censored), or click here. It is a sad day when doctors misuse their power, even sadder when those working with them do nothing to stop patients from being abused.
Checking Facts- Please review the laudatory work performed every day by caring, concerned people scattered across the country(links below). They deserve the highest praise for their efforts, not the continued harassment and denigration that has been lobbied against them for years. Once your journal has checked the facts, it will be clear this small group of like-minded doctors/authors/colleagues has an agenda and is using the Lancet to persecute patients, while seeking support for an ill-informed and highly unpopular, biased position.
I respectfully request that you do not enable this unethical patient persecution in the future. Society looks to doctors to establish and enforce the professional standards of practice. It is my hope Lancet editors and others will take a leading role in safeguarding patients by encouraging professional competence, promoting effective communications, and discouraging the blatant maligning of sick patients these doctors have taken an oath to protect.
Sincerely,
Lucy Barnes
Volunteer Lyme & Tick-Borne Disease Educator
After The Bite
631 Railroad Avenue
Centreville, MD 21617
Email- AfterTheBite@gmail.com
DISCLOSERS: Lucy Barnes is a chronically ill Lyme patient and volunteers to educate and support the growing number of children and adults who suffer from Lyme and tick-borne diseases. She is not a member of any of the referenced organizations, but has assisted some of their members at various times over the past 25 years. Her personal views are not necessarily the same as of any of the referenced organizations or other patients.
REFERENCES: Over 160 reference links have been provided. They can be easily accessed by clicking on the underlined words throughout this letter and attachment.
Lancet Article’s Referenced Organizations- Website Links
LDA www.LymeDiseaseAssociation.org
CALDA www.LymeDisease.org
ILADS www.ILADS.org
Lancet Letter Attachment 1- Partial List of Lyme Disease Related Quotes- Names have been removed to protect the innocent. ** The original X-rated language has NOT been removed**
Section 1- Sources- Relative Risk, and The Wacky World of Lyme Disease
Small sampling of published quotes directed at sick patients and volunteers- as referred to in the Lancet article.
"Disorganized, antagonistic, vindictive, back-biting, fratricidal groups, conspiracy nuts, and any number of certified mental patients acting as self-appointed Movement spokespersons. Now they just may have provided the medical community with a legitimate reason for considering “chronic” Lyme disease as a psychiatric manifestation."
"...a howling hurricane of noisy nonsense, psuedoscience, quackery, and good old-fashioned ignorance." [“pseudoscience”, as referred to directly in the Lancet article by its authors]
"And that’s a bit odd—white, middle-aged women being the main victims of a chronic infection that causes myriad symptoms that can only be held in check by an endless supply of antibiotics and the constant care and attention of an understanding “Lyme literate” doctor."
"Yet this statement seems emblematic of the Internet-connected nuts who think they are plagued with a permanent infection that limits their social and financial lives to sitting in front of their computers and trolling the Internet for Lyme- related information 18 hours a day."
"... most of the chronic Lyme complainants seem to be white, middle-aged women."
"Boy, that LymeNut discussion board gets a little bit wackier every day. Its managers must be following the lead of Iranian mullahs and Chinese Politburo members in defining how to control the media... LymeNut members... Quack therapies and quack doctors are relentlessly defended against common sense and common decency." [Referred to in the Lancet article as one of the authors references- ““Obtained from popular Lyme disease websites…”]
"Wow. Marylanders must be the dumbest people in the U.S. So who’s the audience for this pathetic propaganda?”
“Indeed, I found her to be one of most deceitful, despicable, deluded people I have ever had the misfortune to meet. (And, in 50 years, across 32 states and 26 countries, I've had plenty of opportunities to meet people. Xxxxx still takes the prize.)” [Quote by one of the Lancet article authors with a well-publicized, 16 year history of attacking patients, doctors and organizations.]
"So what are the village idiots of LymeLand bitching about today?”
"Persumably, she “found out” from her LLMD, who must either be GP horribly ignorant of infectious diseases or a con artist looking to turn one imaginary Lyme patient into five billable Lyme patients."
“I guess she's too busy trying to rewrite reality to do any real work. Or maybe she was kicked in the head too many times by the mythical Icelandic horse, Freyfaxi.”
“I’m guessing xxxxxx is either the pathological liar she appears to be or she’s a moron. Evidently, xxxxx is dumber than the average TV viewer and newspaper reader.”
"Once again, the Internet helps some ignorant fool to diagnose himself."
"First, xxxxxx, you’re an idiot." ... "Second, xxxxx, you’re an idiot."
"Patients with imaginary infections being treated by quacks and crooks using inappropriate drugs and methods of treatment. What a world is Lymeland."
"I know I keep saying this, "Just when I think the denizens of Lymeland can't get any dumber....they do."
Directed at volunteer Lyme-related organizations (and people associated with them), the same organizations referred to by the authors in the Lancet article.
"... long list of well-known Lyme quacks, activists and organizations"
“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?”
“The xxxxx Lyme group’s xxxxxx is again letting her training as a scumbag lawyer get the better of her judgment."
“What do you do about people like this? You can’t sue them; they don’t have enough money to make it worthwhile, and a defense of emotional or mental incompetence would probably be compelling. She thinks I exhibit “bizzare behavior” and “could be dangerous” so I just may have to content myself with stopping in Centreville to punch her in the face the next time I drive over to Rehoboth. Would that be considered bizarre behavior or just proof of being dangerous? Maybe I could just show up at the next meeting of her support group…”
"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."
“For all her effort (a 5-page, single-spaced letter), all she and her colleagues got back was a clear repudiation from NIH. The National Academy of Sciences—of which the IOM is a part—has been has been giving the government advice since Lincoln was president. Xxxxxxxx and her Lymee agitators are not going to change that with another redundant accusation… even if it is on congressional stationary.”
"These are little more than “for profit lies” repeated and propagated by activists in need of warm bodies and doctors in need of cash-carrying patients."
"This is quickly becoming redundant. Lyme activists can bitch to each other all they want..."
"What are they going to do after having been bit (again) by Maryland’s mysterious madam of mayhem?" "... bogyman xxxxxx"
"Fortunately, they can’t seem to keep their diabolical plots from leaking out, not to the NYT or a congressional committee, but to middle-aged mental patients who sit around on the Internet all day looking for fantasies to blame for their personal problems. ... Get off the Internet and get some therapy."
"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..."
"Boy, this xxxxxx character is a real wackjob. She can’t seem to get anything straight. She may be the Sarah Palin of LymeLand."
"... 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."
"I found this fascinating piece of medical crap in a publication called XXXXXX . It’s a newsletter put out by some women who think they have chronic Lyme disease. XXX is full of nonsense written (badly) by various Lyme disease quacks and charlatans."
“Speaking of nuts, this local newspaper article reads like it was dictated by xxxxx … Her juvenile online comments about scientists and academic physicians, and her online lectures about Lyme disease suggest she’s a horribly ignorant and ill-mannered 13-year-old hillbilly, or maybe just a liar. Is it possible to be both?”
Directed at doctors treating sick patients- many, as the authors referred to and stated in the Lancet, are members of the International Lyme and Associated Diseases Society (ILADS).
“I don’t understand where these so-called LLMDs come up with this stuff. Are they morons or just liars?” As for ILADS, it’s a bunch of quacks and crooks masquerading as a legit medical society."
"...the hands of some clumsy, incompetent “Lyme Literate” doc."
“Interestingly, her usual pamphleteering partner, xxxxx--What a bigger penis--xxxxx also has some difficulties..."
"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." [Lancet article source- doctors list]
"And speaking of the current ILADS president, here’s part of a letter he just fired off to the IOM about their ongoing study of Lyme disease. It’s really an amazing compilation of lies. Maybe it’s the result of treating so many people who think they have a chronic infection that can’t be eradicated except by walletectomy."
"What’s the Hindu word for ‘quack’?"
"It’s the cheap and easy answer for charlatans and the gullible."
"The host of this intellectual catastrophe is xxxx, (another Hungarian? Does anyone else miss the Berlin Wall?)"
"Again, more nonsense from a psychiatrist wanting to practice infectious diseases. ... Doctors (and quacks) are in control….right up to the point where they kill, injure or rob someone."
"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."
"Xxxxxx is the immediate past president of that online gang of private practitioners who dabble in quackery and wackery. Quackery being the medical use of worthless potions and procedures, and wackery being the belief in and dissemination of wacky ideas."
“Why else would they give xxxxx xxxxx a stump from which to hawk her quackery?"
"Well, like all ads, this one is full of crap. ... It’s the same rehashed, cut-and-paste whining as the earlier polemics by these two obsessive-compulsive propagandists."
“Instead they seem to be based on belief, anecdote, a touch of quackery, and good old-fashioned greed."
“…as a matter of public health and public education, mention a horrible little piece of poisonous propaganda… …this piece of disease porn… Dirt, greed and politics can be found among the advocacy groups and LLMDs … It can be found among the LLMDs who sit on Lyme advisory boards and troll for patients at advocacy meetings.”
Now in California with access to xxxxx pool of “chronic” Lyme disease patients (said to number 1,800) she’s probably making a killing. And maybe she’ll eventually kill someone."
"As for “medical fraud,” well, there’s plenty of that among the private practice quacks who prey on people who think they have “chronic” Lyme disease."
"... 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.”
Directed at politicians involved in health care policies, the same politicians referred to in the Lancet article by its authors.
"[Senator xxxxx] may have other motives; people in Washington usually do."
"Congressman xxxxxx (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."
"I doubt xxx has much more time for this nonsense; he’s busy losing a Senate race in Ct. Still, the idea of calling, faxing or emailing him is tempting. Frankly, I’d like to tell him—as Jon Stewart often tells Fox Noise—to go f*** himself. Though I suspect all I’d get for my trouble would be a long, citation-filled deposition stating why he cannot comply legally, morally, or anatomically."
“No, I think xxxx 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.”
"Control of infectious disease research now passes from medical experts to a vast lumbering bureaucracy and an ignorant, but easily frightened and confused Congress."
"Secondly, the panel was selected by the IDSA and that sleazeball lawyer in Ct. now trying to become a sleazeball senator."
Section 2- Sources- Click Names/Links
Auwaerter- John Hopkins
“Those who advocate for “Chronic Lyme Disease” often use “specialty Lyme research laboratories” that diagnose the infection using unvalidated methods.” [The competition]
“Enter Paul Auwaerter, clinical director of infectious diseases here, who has taken to the dais at national meetings for two years in a row for live debates about Lyme.”
“But watch for long-term alternative treatments for so-called “chronic Lyme disease,” especially long-term antibiotics, says Paul Auwaerter, M.D., clinical director of Johns Hopkins infectious diseases.”
“Alternative practitioners… They treat this so-called Chronic Lyme Disease…”
“Auwaerter said he agrees with the new IDSA guidelines.”
Dattwyler- New York Medical College
"The doctor at Southampton Hospital didn't evaluate you properly," he began, then stopped, correcting himself: "Nah, the doctor was a jerk."
“There is a lot of misinformation in the lay press and on the Internet, and misdiagnosis is rampant.” Luckily, Shapiro says, Lyme disease is fairly easy to diagnose and cure. .. “I have an additional problem as a pediatrician because this is the perfect disease for parental paranoia,” he says.
“If you had a headache, nobody would walk into an office and say, "Ah, ha! Your measles antibody is positive. You've got measles." But God forbid you should have a positive antibody for Lyme disease. You know, you walk across the street and say, it's Lyme disease. People are ready to attribute anything to Lyme disease.”
“The anxiety is as large a problem, or larger, than Lyme disease itself,” he says.
“Some of these Lyme disease support groups really put a lot of pressure on us. … Most of these patients had already been treated for an average of something ridiculous, like 4 months.”
“Do you know who this is? Right, Christy Brinkley. Now Christy Brinkley was deathly afraid, and she lived in a big estate on Long Island. She was deathly afraid of getting Lyme disease. So she employed these guinea hens. .. They spread out on her property to try and eat the ticks. Supposedly she got Lyme disease anyway, the poor thing. [laughter]”
“So all we're doing is talking about preventing a little rash. This isn't AIDS that we're talking about or preventing, folks. It's not a big deal if you get Lyme disease. It's easy to treat and cure.”
“Q: Dogs frequently pick up ticks. Do they get Lyme Disease? A: Yes, they do get Lyme disease, but as with humans, I think it's grossly overdiagnosed. But they do get it and the vets in our area find Lyme disease to be a lucrative disease.”
“Q: How do you convince people who are committed to the diagnosis of Lyme disease, that Lyme disease is not the cause of their non-specific symptoms, especially after they have the support of their own physician, confirming this diagnosis. A: I have a whip! [laughter]”
"So it doesn’t matter what the test result is in someone who walks in with aches and pains and fatigue for six months. That ain't Lymedisease, whether the test is positive or negative."
Halperin- Overlook Hospital- Atlantic Neuroscience Institute
"There are a lot of people being labeled chronic Lyme with very little evidence of it. They don't have Lyme and so they won't respond to a zillion months of antibiotics."
“But what I'm not willing to do is to participate when I'm when my my when my reputation is besmirched and I'm am accused of having conflicts of interest that don't exist, I'm accused of being in the back pocket of insurance companies and things like that... those are not conducive to me being able to function along side patient advocates and other clinicians…”
“Most doctors say, “'It's a virus. Go home and get some rest.' That's scary, because there's a special antibiotic that can cure patients in 24 to 48 hours if the infection is caught early."
“Dr. Dumler says he is uncomfortable with advertisements for the vaccine, which emphasize the consequences of untreated or chronic Lyme disease, because such cases are fairly rare and can usually be treated successfully with antibiotics.”
Nadelman- New York Medical College- Lyme Disease Diagnostic Center
“It is the responsibility of all physicians and medical scientists to stand up to antiscientific, baseless and unethical attacks on those who support an evidence-based approach to caring for patients.”
Bakken- St. Lukes Hospital- University of Minnesota Medical School
"Chronic Lyme disease is a misnomer that is often applied to patients with nonspecific presentations who may or may not have a history of infection with Borrelia burgdorferi, the agent that causes Lyme disease." Dispelling the chronic Lyme disease myth. Kemperman MM, Bakken JS, Kravitz GR.
O’Connell- Southampton General Hospital
'Not everything is hunky-dory, but we have to work from the best available evidence.'
"Dr O’Connell also cast doubt on much of the Lyme information on the Internet. She condemned alternative treatment strategies as dangerous and she felt organisations such as ILADS were unscientific."
Sood- Cohens Children Medical Center- North Shore University Hospital- Southside Hospital
“It is the responsibility of all physicians and medical scientists to stand up to antiscientific, baseless and unethical attacks on those who support an evidence-based approach to caring for patients.”
Steere- Massachusetts General Hospital- Harvard Medical School
"There is more fiction to Lyme disease than fact, and only experts like myself know how to tell the two apart." Allen Steere, 1998 Dutchess Co.
"[I'll talk] only about Lyme arthritis, not all features of Lyme disease- which is too big a topic. . . . [Let me] just be a rheumatologist." Allen C. Steere, San Francisco, April 1999, interview- Jean Hubbard of Lyme Times, April-June 1999 edition.
"Let me read you another part," he said, "so that you understand: 'What do I do to be well again? My life has been turned upside down by "Lyme." I . . . haven't been able to work in 5 years. I've been divorced and have claimed bankruptcy due to mounting medical bills. Currently I am also trying to take care of my mother who lives with me and is suffering from pancreatic cancer, on top of all this I feel terrible." Steere put down the letter and stared at me for a long moment. "What I suspect is that she doesn't have Lyme disease but some kind of psychiatric illness," he said.
“In its classic form, this narrative begins with a vulnerable, naïve, or needy person (often a patient, quite often a woman) and an authority figure (typically a doctor, healer, hypnotist, or priest, but invariably a man) who is believed to possess personal charisma, special skills, powerful medicines, or expert knowledge that brooks no skepticism.” “The patient believes whatever is said, does whatever is said, and –strangest of all –physically experiences whatever is said.”
Weinstein- Washington Hospital Center- Georgetown University Medical Center
“It is the responsibility of all physicians and medical scientists to stand up to antiscientific, baseless and unethical attacks on those who support an evidence-based approach to caring for patients.”
Wormser- New York Medical College
“To me it seems disingenuous to make these allegations when they are so absurd," Wormser said.
"By launching this investigation against a respected medical society, the attorney general sought to politicize science and substitute his judgement for that of medical professionals," Wormser said.”