Complaint Filed on Behalf of Lyme Patients &
Treating Doctors Everywhere
~~~
Massachusetts General & Harvard Medical School
Allen Steere
President, Massachusetts General Hospital
55 Fruit Street
Boston, MA 02114
617-726-2000
MGHPatientAdvocacy@partners.org
Jeffrey S. Flier
Dean, Faculty of Medicine
Harvard Medical School
Harvard University
Office for Professional Standards and Integrity
Harvard Medical School
Gordon Hall, Suite 210
Boston, MA 02115
conflict_support@hms.harvard.edu
October 26, 2011
Dear Dr. Peter L. Slavin and Dean Jeffrey S. Flier,
I am contacting you today regarding a Professor of Medicine at Harvard Medical School, Dr. Allen C. Steere.
I am concerned by his involvement in and association with a small group of doctors and their combined unethical behaviors and actions, which are not only abusive and harmful to patients in the communities you serve, but that bring into question the integrity and reliability of your prestigious University, Hospital and Medical School nationwide.
According to your patient rights policy and stated mission, you believe people have “the right to be treated in a caring and polite way” and you state you are “committed to maintaining the rights, dignity and well-being of all patients”.
Unfortunately, Dr. Steere is not in sync with these polices. Although there are a number of situations where professionalism and dignity are lacking, the latest action by Steere and his small group of colleagues, an article published in September 2011 in the Lancet Journal, basically summarizes the overall picture, albeit a watered down version of what has been occurring elsewhere.
I contacted the Lancet editor (Attachment #4) in hopes his staff would address this deplorable situation from the Journals’ perspective; however, the actual source of the ongoing attacks on patients, volunteer organizations and health care professionals must also be addressed, which is why I am contacting you.
Dr. Steere’s long-time involvement in, leadership of, and association with this small group of doctors (many authors of the Lancet Journal article), combined with their collective bias and conflicts of interest, has been detrimental to the patient, medical and scientific communities for decades. Additionally, Steere’s group has a history of not producing what many consider to be quality work products, hence the reason for the many objections over the years. In the eyes of countless people, nearly every thing Steere and his group touches or are associated with at this point reeks of conflicts, bias and unprofessionalism- something that certainly taints Harvard by way of sponsorship and association.
Attempts to address and correct this situation have been initiated in the past, however, as a result, retaliation against sick and disabled patients, doctors and others escalated in a most vile manner. (See Examples- Attachments #1, #2 & #3- and the Lancet article attachment.)
The unethical acts and behaviors displayed by Steere’s small group encompass many years and have been portrayed in various venues. As you may know, Steere was exposed for wrongdoing connected to his serving on the Infectious Disease Society of America (IDSA) panel during the development of its 2006 Lyme Disease Guidelines. IDSA panel members and the resulting guideline development process were investigated by the Attorney General in Connecticut due to 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 statementindicating serious problems existed with Steere and others in his tight-knit group. In part he stated:
"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.”
Accepting no responsibility for his actions, Steere, along with some of his IDSA panel members and colleagues, have engaged in a series of retaliatory attacks, specifically targeting people they believe prompted the Attorney General’s investigation, as is evident in the latest Lancet article.
I am also concerned over the use of research funding (government and private) that Steere and others utilized and profited from (separately or together) in regards to Lyme and tick borne diseases and related products. These endeavors rarely, if ever, produced beneficial outcomes for patients or were able to advance the science in a meaningful way and should be closely scrutinized.
The idea that researchers and doctors such as Steere feel it is permissible to accept funding to study a particular disease, then turn around and abuse and attack people who have the disease and those associated with the education, prevention and support of those with the disease, is highly problematic and totally unacceptable.
Steere’s conflicts of interest, proven bias and obvious detestation of those with Lyme disease, which he and Harvard profits from, calls into question any existing and future body of scientific work stemming from both Steere and Harvard. This situation should be investigated thoroughly and changes made accordingly to protect the public’s health.
Steere’s connections with Baxter, SmithKline, Medimmune, Imugen, L2-Diagnostics, GlaxoSmithKline, ATTC, Novartis, and Viramed over the years brings into question his true goals and motives and indicates his conflicts of interest are wide-spread and run deep. After thirty years of researching Lyme disease and profiting from it, Steere’s contributions to the Lyme Community include:
1. Lyme-related vaccines that were removed from the market after lawsuits were filed by patients allegedly harmed. The vaccine research reportedly took four years (and the futility continues today), wasted millions of dollars, originally spanned ten states, and involved 11,000 patients.
2. Testifying against doctors treating Lyme patients.
3. Testifying against sick and injured patients for insurers in Workers Compensation cases.
4. Publishing Lyme disease was caused by a virus and no treatment was necessary, prior to knowing what actually caused the infection or how it should be treated. Although this happened in the early years, the same basic theories are still used today by Steere and his small group.
5. A waste of grant funding awarded to Steere over a span of eight years (at Harvard facilities alone), totaling more than 4 million dollars, to determine what he and others already knew- that tests on synovial fluid were unable to be used to accurately determine active Lyme arthritis infection. Almost 30 years earlier (1977) Steere published on patients infected with Lyme disease- “Neither cultures of synovium and synovial fluid nor serologic tests were positive for agents known to cause arthritis.” He most recently published (2011) after proving PCR tests were not reliable, “If arthritis still persists and if the results of polymerase chain reaction testing for B burgdorferi DNA in joint fluid are negative, the patient is treated with antiinflammatory agents.” This statement assumes the infection is not present- false assumption- and allows Steere to stick to his old theories, which contributes significantly to patients being denied antimicrobial therapy for a potentially serious infection known to cause chronic illness, disability and death.
6. Developing and promoting a restrictive “standard of care” that has been referred to as an ongoing “Tuskegee Experiment” by countless physicians and patients.
7. Admitting the science is unsettled and collecting grants under that pretense, yet making official recommendations (followed by insurers) for patients that are so extreme and inflexible that even an occasional vitamin tablet and/or nutritional managements to improve a patient’s general health and immune function is considered taboo.
8. Producing and promoting tests and testing methods reported to miss up to 75% of those infected.
9. Supporting and using a failed surveillance reporting system even the CDC admits misses 10 people for each one counted.
10. Positioning himself up to be the final word, the Almighty, no matter how many times he has been proven wrong. Steere’s quote: "There is more fiction to Lyme disease than fact, and only experts like myself know how to tell the two apart"- A. Steere, MD, at the 1998 Dutchess Co. meeting.
Although patients have suffered immensely under the rule of Steere and his recommendations, he was awarded a Gold Metal signed by none other than Steere’s long time friend and colleague, Edward McSweegan, who is well known for his blatant, racist, and vile attacks on Lyme patients and others over the years. (See attachments #1, 2, and 3) "For discovering the pathogenesis of Lyme disease, and for translational research--from bench to bedside": Announcement of Gold Medal for Allen C. Steere- Albert B. Sabin Vaccine Institute, signed by Edward McSweegan of the National Institutes of Health, on September 24,1998.”
McSweegan was the Lyme disease program officer for NIH and worked with Lyme disease grants until he was removed from that position for attacking patient groups. Knowing this, fifteen years later Steere continues to work/publish with McSweegan and collectively they attack patients and others (example- Lancet article) in an effort to discredit, harass and eliminate them.
Steere’s personal and professional involvement in some of the most highly controversial and failed Lyme related endeavors over the years would indicate to even the uniformed consumer he is behaving unethically, is unable to produce quality, trust-worthy Lyme-related work products, and is perhaps shamefully involved in promoting his and his group’s own interests over those of patients while attacking those he is suppose to, as a doctor, be dedicated to helping.
Please note, I am not asking for you or the Harvard staff to address the scientific debate surrounding Steer’s stance that Lyme disease is “over diagnosed” or his position that treatment of Lyme (other than his own recommended treatment) with any other antibiotic, prescription, OTC medication or supplement “is notrecommended for patients with chronic (⩾6 months) subjective symptoms”. The growing number of patient casualties and published literature already confirms Steere’s methods are responsible for disastrous results in a growing number of people. In fact, Lyme patients circumstances are so deplorable with Steere and his colleagues in charge that legislative bills had to be introduced to protect health care professionals from disciplinary action by medical boards for treating Lyme patients.
Rather than addressing Steere’s controversial theories, I am asking that you and the appropriate Harvard staff focus on putting a stop to the ongoing abuse so the unbiased scientific research can finally move forward, sick patients can be treated respectfully, and medical professionals can treat their own patients without fear of retaliation from Steere and his colleagues/coauthors.
In lieu of reiterating some of the concerns surrounding the latest Lancet article by Steere, et al., my private letter to the editor is attached. It provides more detailed information, and includes over 150 references. Please review the Lancet letter and its attachments, and let me know if you will be addressing this unacceptable situation to prevent it from recurring.
The ongoing abuse by Steere and his colleagues, which has been allowed to continue unchecked, combined with the patients inability to be treated for a potentially serious disease, and the health care professionals inability to treat their own patients as they deem necessary, incites others to try to seek relief, causing this ongoing back and forth war. Those in power cannot allow their employees and associates to put desperately sick people in a locked cage, refuse them the basic necessities in life (access to health care) and then poke the patients with sharp sticks while they are suffering. That practice is inhumane and totally unethical.
Please help me stop this from continuing- help me stop this war perpetrated by Steere and a handful of his people so we can all move forward. I am sure Harvard University would not allow cancer patients or diabetics to be attacked or abused in this fashion, so please take appropriate actions to protect us too.
To summarize, I request that you:
1. Enforce the professional standards and ethics Harvard University and Medical School espouses with the offending party, Dr. Allen Steere, and others as appropriate.
2. Sanction Steere and those who maliciously publish against sick patients and anyone attempting to assist them.
3. Investigate whether Steere’s stated bias and malicious acts inhibit his ability to objectively research, publish and/or recommend diagnostic methods and treatment protocols for tick borne diseases in afflicted patients.
4. Investigate the use of funding awarded to Steere (directly or indirectly) at Harvard and other locations, and retract/void any research conclusions and papers stemming from, and affected by his obvious bias, multiple conflicts of interest and unethical behavior.
5. Immediately instruct Steere to cease and desist his attacks on patients and their volunteer groups, as well as health care professionals.
6. Report your findings and the actions taken as a result, so I can assure patients and others this issue has been adequately addressed.
If you have any questions, please feel free to contact me using the email address below. I await your reply and very much appreciate your time and effort. The attachments are included with this letter, and please note the underlined words in my letter above provide links to additional references.
Sincerely,
Lucy Barnes
631 Railroad Avenue
Centreville, MD 21617
Attachment #1. Example of attacks/abuse- Email from Steer’s coauthor and colleague (McSweegan) to a patient, addressing her request for information. The request, made of the Institution, was intercepted by another coauthor. The patient never received an official response to the inquiry, only the email below. Warning- Offensive language has not been edited out. [Update- Edited by LB to partially eliminate language]
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 [Klempner] 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 Steere’s small group threatens a patient after she writes a rebuttal to his unfavorable review of her newly released book and reports his abusive actions to her Congressional representative. In retaliation, Steere’s coauthor on the Lancet article threatened to contact the patient’s college (email below) to interfere with her attempt to get her degree. He followed up with his threat, and shortly thereafter, the patient was hit with another severe blow, the same kind that has destroyed other Lyme patients with sick children who are involved with educating and supporting people with Lyme disease.
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.” [McSweegan]
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 or his group, which she did. The following day, true to form, McSweegan called DeRose’s PhD advisor in an attempt to discredit her. DeRose later sent an email to a patient (LB) concerning the anonymous complaint filed with child protective services shortly after Weinstein’s colleague contacted DeRose’s college. Several mothers (volunteers helping others) with sick children have had anonymous complaints filed against them in the same manner in the past- with unsubstantiated charges related to abuse because the child’s doctor was treating the child for Lyme disease.
DeRose wrote to volunteer patient support group leader (LB): “It’s a long complex story but the CPS complaint made accused: my husband of sexual abuse and me of crackpot [Lyme] 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, McSweegan’s “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
Original 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.”