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Maternal-Fetal Lyme Transmission: Federal $$ & Research Support / Webinar

 
BACKGROUND
Congress recently increased annual funding for research on Lyme and related tickborne diseases at NIH by $29 million to a total of $63 million. Most of this is discretionary, although $10 million of it is mandatory for research specific to Lyme disease. In addition to this historic increase, there are opportunities for funding and research support for studies on maternal-fetal transmission of Lyme disease and the impact of pregnancy on immune response.

To stimulate researcher interest, NIH has issued a series of notices to encourage investigators to apply for grants and has asked stakeholder organizations for help getting the word out. This is an extraordinary opportunity for established investigators to build a new foundation of research for a long-overlooked problem. This is also an excellent opportunity for early-stage investigators to learn more about this field of research and receive guidance from NIH research program officers.

While it is widely accepted that Lyme disease is spread by a tick bite, it is less well known that the agent of Lyme disease, Borrelia burgdorferi, can cross the placenta, both infecting, and causing harm to, unborn children. CDC and NIH have recently acknowledged this crucial fact. Despite this, the dearth of published research on this topic has left patients, healthcare providers and caregivers to navigate a vast field of unknowns related to diagnosis, treatment and prevention, with virtually no current science to guide them.

In December 2020, a recently formed advocacy group, Mothers Against Lyme, met with officials and program officers at NIH to discuss the need for this research. The message from NIH was that plenty of funding is available, but the amount is dependent on investigator-initiated applications.


 
CURRENT OPPORTUNITIES
Following is a list of related notices of special interest and funding opportunity announcements.  In addition to tickborne diseases, these notices cover a broad range of research related to maternal-fetal medicine, obstetrics, and perinatal infectious diseases.

  • National Institute of Allergy and Infectious Diseases (NIAID)
    • NOT-EB-21-001: Small Business Initiatives for Innovative Diagnostic Technology for Improving Outcomes for Maternal Health https://grants.nih.gov/grants/guide/notice-files/NOT-EB-21-001.html
    • This multi-center notice includes a section from NIAID that calls for:
      • Development and validation of diagnostics for gestational Lyme disease, which can adversely impact maternal health and pregnancy outcome.
      • The development of technologies that detect and monitor normal dynamics of the maternal immune system during pregnancy as well as identifying clinically relevant immune dysfunction metrics for the prediction of pregnancy complications (e.g., infections, preeclampsia, sepsis) that lead to maternal morbidity and mortality.
  • National Institute of Child Health and Human Development (NICHD)
    • NOT-HD-19-021: Advancing the Understanding, Prevention, and Management of Infections Transmitted from Women to their Infants https://grants.nih.gov/grants/guide/notice-files/NOT-HD-19-021.html
      • The purpose of this funding opportunity announcement is to stimulate investigations, including translational, epidemiologic and clinical studies and trials that improve the understanding, prevention and clinical outcomes of non-HIV infections transmitted from women to their offspring during pregnancy, labor and delivery, and breastfeeding
    • PAR-20-298: Development of the Fetal Immune System https://grants.nih.gov/grants/guide/pa-files/PAR-20-298.html
      • The purpose of this funding opportunity announcement is to understand the contribution of specific elements of maternal molecular and cellular factors that can control and effect the development of the fetal immune system.
  • Department of Defense (DOD)
    • Funding for research on maternal-fetal transmission of Lyme disease is available through the DOD Congressionally Directed Medical Research Program for Tickborne Diseases, which is currently funded at $7 million annually.
    • DOD Tick-Borne Disease Research Program Funding Opportunities for FY 2021https://cdmrp.army.mil/pubs/press/2021/21tbdrppreann
      • This notice includes a call for research on understanding the potential role of maternal-fetal transmission and the ability to prevent TBDs by this mode of transmission.

 
WEBINAR FOR RESEARCHERS
If you are interested in learning more, please consider attending the webinar: Lyme Disease and Pregnancy: State of the Science and Opportunities for Research Support

Thursday, April 29 from 5:00 – 6:30 pm EST. There is no charge to attend. This webinar is hosted by Mothers Against Lyme & Project Lyme. You will learn about the urgent need for this research, the state of the science and research gaps, and opportunities for funding and research support. You will also be able to interact directly with research program officers from NIAID and NICHD.

NOTE: Thanks to Bruce Fries – President, Patient Centered Care Advocacy Group & Advisor for Research and Public Policy for Mothers Against Lyme – for this information, and thanks to both groups for their work on this issue. Patient Centered Care Advocacy Group is an LDAnet partner organization.




NIH Guideline Committee Changes Ivermectin Rec for COVID & FLCCC Responds

On January 14, 2021, The National Institute of Health (NIH) COVID-19 Treatment Guidelines Panel issued a change in position and are no longer recommending “against” the use of ivermectin for the treatment of COVID-19. This “permission” was issued 8 days after Drs. Paul Marik and Pierre Kory, founding members of the Front Line Covid-19 Critical Care Alliance (FLCCC), along with Dr. Andrew Hill, researcher/consultant to the World Health Organization, presented their data on ivermectin before the Panel, showing significant benefits of ivermectin in prophylaxis, early treatment and late-stage disease.

The NIH Panel stated that there is insufficient data to recommend either for or against the use of ivermectin for the treatment of COVID-19, and that more clinical trials are needed. The FLCCC responded to the Panel in a public statement, dated January 18th, expressing gratitude for the Panel’s neutral stance on ivermectin. However, they questioned the Panel’s caution and criticism of the existing evidence, especially in the midst of escalating hospitalizations, and deaths from COVID-19.

In their response, FLCCC stated that both monoclonal antibodies and convalescent plasma therapies are also regarded as neutral, and are used widely in COVID-19 treatment in the U.S., but are inferior to ivermectin in 3 critical ways:

1) Ivermectin is the ONLY one of these 3 therapies that has multiple randomized controlled trials (RCT’s) and a meta-analysis of RCT’s that demonstrate statistically significant reductions in mortality rates; shorter durations of hospital stay; profound reductions in the infectivity rate in both pre-and post-exposure prophylaxis studies; faster times to clinical recovery; and faster times to viral clearance.

2) Ivermectin is the ONLY one of these 3 therapies that is globally available, low cost, given orally, requires no special shipping or handling, and is safe to use in nearly all clinical situations.

3) Ivermectin is the ONLY one of these three therapies that can be widely used in both early outpatient treatment as well as in prevention.

NIH Panel also stated that some clinical studies showed no benefits or worsening of disease after ivermectin use; however FLCCC objected, showing evidence of flawed studies. NIH Panel also listed “limitations” preventing them from making a stronger recommendation. FLCCC disagreed with these limitations. (See Public Statement)

FLCCC concludes: Ivermectin is one of the safest, low-cost, and widely available drugs in the history of medicine. The evidence in favor of ivermectin includes approximately 32 controlled trials, 20 of them RCT’s. Similar meta-analyses of these trials have been performed worldwide, concluding that ivermectin is a highly effective therapy for COVID-19 and/or should be widely adopted for use.

FLCCC:Why does the Panel’s opinion diverge from these other expert meta-analyses? Further, why does the Panel’s opinion diverge from the expert peer reviewers (two of whom we were told were FDA employees) that has now accepted our manuscript and its conclusions for publication? …Patients do not have time to wait, and we as healthcare providers in society do not have that time either. We plead with the Panel to rapidly re-review and re-consider the current strength of their recommendation.”

Read Public Statement (January 18th, 2021) –
FLCCC Alliance Response to the NIH Guideline Committee Recommendation on Ivermectin use in COVID-19 dated January 14th, 2021

 




NY Supreme Court Judge Orders Hospital: Give Patient Ivermectin for COVID-19

According to “TrialSite News” on January 21, “Apparently, a judge just ordered the Millard Fillmore Suburban Hospital to allow an 80-year old woman to be treated with Ivermectin.  A New York Supreme Court judge ordered hospital to allow her to be treated with Ivermectin for COVID-19.  Ivermectin, which had been administered in the ICU with noticeable symptom improvement was discontinued when the patient was moved to another unit in the hospital. Family members took legal action after the doctor in the new unit disallowed the use of the drug, and the woman’s health condition again declined. Family members immediately involved lawyers and legal action to resume treatment. Judge, Henry J. Nowak aligned with the family.

Ivermectin is approved for fighting parasites and lice. NIH states that in general, the drug is well tolerated and is currently being evaluated as a potential treatment for COVID-19. However, is not yet approved for use by the US Food and Drug Administration (FDA).

The National Institute of Health (NIH) COVID-19 Treatment Guidelines Panel recently issued a change in position on Ivermectin

NIH COVID-19 Recommendation:

  • The COVID-19 Treatment Guidelines Panel (the Panel) has determined that currently there are insufficient data to recommend either for or against the use of ivermectin for the treatment of COVID-19. Results from adequately powered, well-designed, and well-conducted clinical trials are needed to provide more specific, evidence-based guidance on the role of ivermectin for the treatment of COVID-19.

Read full article here

 




CDC Nat’l Framework: Strategy for Vector-Borne Diseases Prevention & Control

First announced at the HHS Tick-Borne Disease Working Group’s (TBDWG) September 22 meeting, the Centers for Disease Control (CDC), in a Capitol Hill Announcement, presented plans to join with five federal departments and the Environmental Protection Agency in developing the National Public Health Framework for the Prevention and Control of Vector-Borne Diseases in Humans (Framework). The CDC acknowledges that over the past 15 years, the number of vector-borne disease cases has dramatically increased due to expanding vector ranges and the proliferation of emerging pathogens. The Framework will address Americans’ continually increasing risk for contracting vector-borne diseases, which are a growing public health threat that the U.S. has not sufficiently responded to.

National Public Health Framework for the Prevention and Control of Vector-Borne Diseases in Humans (CDC.gov)
Framework Schematic (CDC.gov)

Vision & Mission
The vision of the Framework is to achieve “a nation where vector-borne diseases are no longer a threat to human health and well-being” with a mission “to protect people from illness, suffering, and death due to vector-borne diseases” (CDC.gov).  The CDC’s website outlines the following goals of the federal alliance:

  • Better understand when, where, and how people are exposed to and get sick or die from vector-borne diseases
  • Develop, evaluate, and improve tools and guidance for the diagnosis and detection of vector-borne diseases
  • Develop, evaluate, and improve tools and guidance for the prevention and control of vector-borne diseases
  • Develop and assess drugs and treatment strategies for vector-borne diseases
  • Disseminate and support the implementation of effective public health and vector control products, tools, and programs to prevent, detect, diagnose, and respond to vector-borne disease threats – (CDC.gov)

Strategy & Stakeholders
The strategy, authorized by the Kay Hagan TICK Act of 2019, establishes priorities and lays a framework for critical vector-borne disease prevention and control activities. However, in their statement, the CDC acknowledges that the federal government cannot tackle the complex challenges presented by vector-borne diseases alone, and therefore outlines a multidisciplinary set of stakeholders including state, tribal, local, and territorial health departments; vector control agencies; healthcare providers; academic and industry partners; policy and decision-makers, including Congress and elected community leaders; public health partners, such as nonprofit organizations and associations of medical, entomological, and vector control professionals; and the public (including patients).

Participating Federal Agencies & Departments 
Other federal agencies and departments participating in the Framework include Food and Drug Administration (FDA), National Institutes of Health (NIH), Department of Defense (DOD), Department of Agriculture (USDA), and Department of The Interior (DOI).

The CDC’s brochure for the National Public Health Framework for the Prevention and Control of Vector-Borne Diseases in Humans states that, “To protect the nation and save lives, success depends on continued collaboration, support, leadership, and excellence in innovation and program implementation.”

Learn More About the Framework 
To learn more read the CDC’s brochure, A National Public Health Framework for the Prevention and Control of Vector-Borne Diseases in Humans from the CDC website.

Click here to review the National Framework fact sheet from the CDC website.




NIH Grants 1.9 Million for Vaccine to Prevent Lyme

Ticks with blades of grass in a jarWest Virginia University researchers received a $1.9 million grant from the National Institute of Allergy and Infectious Diseases, an institution of the National Institute of Health (NIH), for a vaccine to prevent humans from contracting Lyme disease.

Mariette Barbier, assistant professor in the School of Medicine’s Department of Microbiology, Immunology and Cell Biology, is leading the five-year project, along with Timothy Driscoll, assistant professor of biology in the Eberly College of Arts and Sciences, and Heath Damron, assistant professor and director of the WVU Vaccine Development Center.

Barbier and her team will try to develop a vaccine effective against the various species of Borrelia (the Lyme disease bacteria). They will be using RNA sequencing to examine how pathogens respond in both infected ticks and mice, and identify relevant antigens during infection.

Driscoll will be studying the proteins made by Borrelia during the black-legged ticks life cycle. “In vaccine development, what we try to do is identify those proteins and target them in hopes of clearing the pathogen out, killing it, essentially. If a protein is essential for survival, it makes it harder for the pathogen to change it and evade the immune system,” says Driscoll.

Barbier has studied bacterial pathogens, including Pseudomonas aeruginosa, which requires iron to grow and infect their host. “We figured out which antigens could be used to formulate a vaccine, and found the Achilles heel to the bacteria to use against it,” Barbier said. “We focused on one system, which is the iron acquisition system of Pseudomonas.”  Since Borrelia does not require iron, she is driven to find what would be required of Borrelia.

Barbier said. “If it doesn’t use iron, what else can we use against it? By bringing in the expertise of others, we’re going to crack the problem.”

Read more about the project here (eurekalert.org)

Click here for Project Info on NIH site

Read about another recent NIH-funded Lyme Vaccine study here




NIH awards $3.5 Million for Novel Lyme Disease Vaccine Study

syringeWith a new $3.5 million grant from the National Institutes of Health (NIH), Utpal Pal, PhD, professor in Veterinary Medicine at the University of Maryland (UMD) will be partnering with Matthias Schnell, director of the Jefferson Vaccine Center at Thomas Jefferson University to develop a novel “next-generation” Lyme disease vaccine.

Pal, a tick immunobiologist, and Schnell, whose lab studies rabies virus as a platform for vaccination, will adapt the rabies virus platform to fight Lyme disease.  The inactivated rabies virus, which helps the body produce antibodies to fight rabies, will be repurposed to produce other types of proteins that can fight Borrelia burgdorferi, the Lyme disease bacteria, a technique found effective for other viral vaccinations. 

This study will test the four already identified vaccine candidate proteins, as well as the three major types of rabies vaccine platforms– using live attenuated virus, inactivated virus, and the shell of a virus with viral proteins on the outside but no virus inside to trick the body.  Pal is also studying both Borrelia proteins and the tick proteins that keep the Borrelia alive so it can be tramsmitted to humans. 

Read more about this project here – (prweb.com)

Click here for Project Info on NIH site

Utpal Pal, PhD lectured at LDA’s 2018 Annual Scientific ConferenceImmune Evasion of Lyme Disease Agents

Read about Pal’s previous research – UMD Research Isolates Bb Protein that Disables Immune System

 

 




Contentious 9 Hour WG Meeting: Persistent Infection a Religious Belief? WG Co-Chair Says Yes

Pat Smith, LDA PresidentPat Smith Describes Pre-Meeting Effort to Minimize Lyme.
Below in For the Record are the written comments LDA President Pat Smith, a public member of  HHS TBD Working Group read  (slightly compressed)  into the record at the Working Group (WG) meeting on July 8 about the potential WG Chapter report for which she was responsible, the only one addressing patient issues. 89 written comments/deletions to the report had been suggested before the meeting by Working Group members. Working Group Co-Chair Dr. David Walker and Member Eugene Shapiro were responsible for moving to delete entire sections of Lyme material from the report, many of which called for the removal of much of the Lyme material and the de-emphasis of Patient Access to Care in the Chapter. 

 

Co-Chair Says “almost religious belief that it’s a persistent infection”

 

David Walker, MD, of the Tick-Borne Disease Working Group
David Walker, MD,
Tick-Borne Disease Working Group

At the meeting itself, Working Group Co-Chair, Dr. David Walker, and Member Eugene Shapiro made and seconded many motions to remove material from the proposed draft report including the two sets of guidelines, shared decision making, access to care, Lyme treatment trials, and cost of Lyme disease. There was also a discussion in which Shapiro and Walker wanted to remove Lyme mouse model studies and other animal studies that showed persistence that were included in the draft report, saying animal models were really not a good use for this infection.

Dr. Walker said there is “emphasis on belief…almost religious belief that it’s a persistent infection” and at various times said they probably didn’t have Lyme to start with. After many hours of this discussion, no other WG members would second the motions for removal.

For the record: The importance of today’s meeting and our Chapter review can’t be overstated.  My Access to Care, Education & Training subcommittee including healthcare providers and patients, with expertise in the problems associated with patients’ access to care including physician education, submitted a 75-page subcommittee report and additional 45 citation pages documenting these problems to get help for a body of patients neglected especially those who develop the most serious stage of Lyme and to prevent acute patients from reaching that stage.  Patients looked to this WG created through legislation initiated by, written by, and pushed through Congress by Lyme patients/advocates.  In 2019 through now, 78% of comments to the online WG mailbox were about TBD/Ticks, 70% of those TBD comments were on Lyme disease and 81% of those were on chronic/persistent/PTL, not acute. 

Before the January 2020 Working Group meeting, WG members were instructed to read each subcommittee report. Subcommittee co-chairs presented reports at that meeting.  In my subcommittee case, since I had not had an active co-chair for a while, a subcommittee member stand-in, not permitted to vote or ask questions, was allowed to present with me a PowerPoint, including Subcommittee rationale and recommendations later discussed, modified, and voted upon.

Then, writing groups of 2 WG members each were solicited for each Chapter to be written for the WG report to Congress.  The WG was definitively told that all information for the WG report had to be taken from the Subcommittee reports. I asked if newly published information, for example, could be used, was told, yes, but then the WG would have to approve that new material.  Recently activated WG alternate member Captain Scott Cooper and I volunteered to write the Chapter we’re presenting today. 

As directed, we pulled language from the subcommittee reports, submitted our Chapter for review and was told “well organized, appropriate to audience level, and it flowed logically,” but we needed to “rebalance” the chapter as there was too much information on Lyme disease and access to care than other tick-borne diseases and education.  Suggested rebalancing included removing a factual table from CDC which listed TBDs for 3 years, in descending order of reported case numbers, as the table could “inadvertently diminish the importance of other tick-borne diseases because their numbers are much lower.”  It was OK that we led with burden of disease (cost, quality of life, & productivity), compelling reasons for Congress to act. However, we should remove those items from our Chapter report background and put them into the background for the entire WG report, despite the fact they were developed specifically for our patient issues.  Bottom line: minimize Lyme, reduce access to care.

We incorporated additional other TBD material from subcommittee reports into the Chapter and shortened the Lyme portion. We didn’t remove the table, since it factually portrayed reported case numbers, nor did we remove our background material germane for our specific patient issues.  After another review submission, we were told the Chapter was “starting to become balanced” but now it was too long.  We needed to shorten it. We again shortened to include removing the redundant list of recommendations upfront, already elsewhere in the Chapter. 

All WG Chapter Writers had a deadline to post draft Chapters to a WG private Share Point site. WG members had a May 22 deadline to submit comments there on all chapters.  All Chapter language was now up for grabs, we were told, even the language we took from the already discussed Subcommittee reports, not just new language. I objected, since that seemed to contradict process discussion at the prior meeting.  Significantly, I objected to the lack of process transparency, which was directing these online SharePoint discussions to be behind the scenes–not WG members in public holding transparent discussion with all WG members, embodying the intent of a FACA Working Group.  Time went by with no response to my objection, so I reluctantly decided to proceed with filing for resolution through a FACA complaint, but I was subsequently informed my concerns were heard, and all discussion would now be in public, as we are doing today so I did not proceed with the complaint.

While working in the private SharePoint site, I stumbled across an unknown person who had direct access to all Chapters and material in the site.  Research showed me this individual was from NIH, not either the NIH Working Group member or alternate—another NIH employee, an attorney. Upon questioning the individual’s identity and purpose, I was informed NIH requested that that individual be allowed access to our SharePoint documents and was given access.  It appears that government employee WG members have rights public members do not have, are not aware of, and do not have to be informed of.  Since public members are considered special government employees, I requested to federal officials that I be permitted to have a patient advocate attorney in SharePoint to review for patient perspective. I was informed my request was denied by WG legal counsel. 

These items coupled with others such as a WG member who did not attend being allowed to vote by proxy through the co-chair, without knowledge of the WG, and the unexplained delay in releasing these draft Chapters to the public prior to this meeting for their review and comments before the WG vote are concerning, and refusal to provide the public with government inventories as agreed to at the April meeting.  I questioned those practices, which in my opinion, exhibit a disregard for the public, in particular, the patient community.   History coupled with these practices reinforce the sentiments of many in the public that they are again being deceived by their own government.

As we move forward on our Chapter section now, note that our printed report has 12 pages with internal citations to address the decades-long problems of hundreds of thousands of Lyme patients plus other tick-borne diseases patients. Additionally, there are 7+ printed pages of comments from SharePoint made by WG members on our Chapter, a number of which call for removal of much of our documented material on Lyme disease─ a disease under-reported by a factor of 10 according to CDC studies and CDC testimony by Lyle Peterson to a Senate Committee, (1) meaning about 350,000 cases annually. According to NIH, Lyme is a disease that makes up 82% of tick-borne diseases, (2) and there were 74 Lyme deaths in 2017. (3) Thus, our Chapter focuses on the tick-borne disease whose patients comprise the largest burden of disease, Lyme disease. That is balance.  Captain Cooper, I now turn further Chapter discussion to you.

(1) CDC Vector-Borne Diseases Director, CDC Lyle Peterson to the Senate Aging Committee September 5, 2019

(2) NIH says Lyme 82% of tick-borne disease cases

(3) NIH says 74 deaths in 2017.  NOTE: I had accessed this info prior and printed out the information. Link no longer goes to the page. NIH asked at the meeting where I got that death data as they could not find it anywhere. I have sent it to them.




TBD Working Group Meeting Summary/Public Comments Now Available – June 4, 2019

hhsThe federal Tick-Borne Disease Working Group (TBDWG) held their ninth meeting in D.C. on June 4, 2019 with a focus on developing the next report to be drafted for the HHS Secretary and Congress. The report will include an update on federal tick-borne disease activities and research findings.

Read Meeting Summary and Written Public CommentsJune 4, 2019 TBDWG Meeting

Still pending: Archived Webcast, Slide Presentation




LDA Provides Input to National Institutes of Health Strategic Plan Development

The National Institutes of Health put out a request for information in February 2019 for stakeholders to submit specific comments that were to be submitted through an online form.  The NIH is developing a strategic plan to advance tick-borne disease (TBD) research and development over the next five years and beyond.

The Lyme Disease Association, Inc. submitted the following letter in response to the request. No comments will be made back to the responders. NIH encouraged organizations (e.g., patient advocacy groups, professional organizations) to submit a single response reflective of the views of the organization/membership as a whole when possible.

The Tick-Borne Disease Working Group under HHS in Washington, DC, submitted a report to Congress in November of 2018 that made the following recommendation:

Recommendation 8.1: NIH: Create an NIH tick-borne disease strategic plan, with public input during creation and implementation, to address tick-borne diseases, including all stages of Lyme disease. Include in the strategic plan the coordination of research funding across NIAID, NINDS, NIAMS, and NIMH to increase knowledge of pathogenesis, improve diagnosis, and develop and test new therapeutics for tick-borne diseases. Update every five years.

Click here for Lyme Disease Association letter to NIH

NIH request for Information

https://grants.nih.gov/grants/guide/notice-files/NOT-OD-19-077.html




Institute of Med.: Lyme Wrkshp Rept.

The Institute of Medicine (IOM) released its Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases: The Short-Term and Long-Term Outcomes Workshop Report, on April 20, 2011.

In a move designed to protest the National Institutes of Health’s (NIH) use of the IOM to conduct a workshop NIH was charged with organizing, the Lyme Disease Association (LDA), Time for Lyme (TFL), and the California Lyme Disease Association (CALDA), pulled out of the IOM workshop process and did not submit their commissioned scientific paper to the IOM committee. The three groups raised strong objections to the IOM process which:

1. permitted bias on the workshop committee and lack of transparency.
2. failed to satisfy the intent or objectives as delineated in Congressional Appropriations language.

On September 29, 2010, Congressman Christopher Smith (NJ) introduced for inclusion in the Congressional Record, “The Patient Perspectives on the Research Gaps in Tick Borne Diseases,” which he stated was written by “three of the Nation’s largest Lyme disease advocacy organizations [LDA, CALDA, TFL], who represent tens of thousands of patients.”

Links are provided below to review the IOM workshop proceedings, Lyme group actions, the Congressional report and the IOM workshop report.

September 20, 2010 Lyme Disease Association Press Release- Non Compliance Causes Lyme Patient Groups to Withdraw from Scientific Meeting 

September 29, 2010 Congressional Record 111th Congress Report- “The Patient Perspectives on the Research Gaps in Tick Borne Diseases”.
http://thomas.loc.gov/cgi-bin/query/z?r111:E29SE0-0367:

October 5, 2010 Lyme Disease Association Press Release- Research Gaps in Lyme Disease Exposed in the Congressional Record

April 20, 2011 IOM Workshop Report
http://www.nap.edu/catalog.php?record_id=13134