This webpage displays the written comments received by the Tick-Borne Disease Working Group for the March 2020 meeting. The opinions expressed in each comment displayed on this webpage belong solely to the author of the comment and do not necessarily reflect the opinions of the Department of Health and Human Services (HHS) or the Tick-Borne Disease Working Group. Any information provided in the comments displayed on this page has not been verified by HHS.
Anonymous
https://www.webwire.com/ViewPressRel.asp?aId=258007
Lucy Barnes
Lyme Disease – 40 Years
Over 40 years- still no accurate tests (74.9% of infected patients missed); still no successful prevention methods (with over 1,500 published studies and billions spent); still no successful treatments; and restrictions regarding alternative treatments have been recommended against by the IDSA and CDC.
Tick attachment times are skewed, as is the one dose doxy protocol (both send dangerous messages).
Nearly everyone who is ill struggles with obtaining insurance coverage (almost non-existent).
Recommendations by the IDSA & CDC consist of referrals to psychiatrists and OTC medications for devastating, ongoing and worsening symptoms caused by an infectious disease.
There are still hugely inaccurate reporting practices (30,000 was actually 300,000 per year).
IDSA guideline authors and the CDC still deny chronic Lyme exists and refuse to address it (even with over a thousand studies proving otherwise).
No studies, testing, or treatment protocols have been developed for sexually transmitted or congenital Lyme disease.
Serious concerns about blood, tissue and organ donations.
Lack of CDC sponsored public awareness campaigns (last press release from CDC was in 2016- B. miyamotoi). No additional CDC press releases in the past decade.
Human vaccine has failed miserably with no hope of a new one in the future that would be safe and effective. Billions of dollars wasted and continuing.
Actions by IDSA, CDC and supporters are mostly punitive. Dozens of Lyme treating health care professionals have been targeted, investigated and often charged simply because they treat Lyme disease patients. Volunteer Lyme patient advocates, labs and patients have been brutally attacked and some even threatened by government officials and others over the years.
Government/IDSA meetings, conferences, committees, working groups, etc. are purposely stacked against having view points that don’t “tow the line”.
Several hundred lawsuits filed by plaintiffs who have been injured in large part due to the IDSA/CDC guidelines and the failed Lyme vaccine. One suit still in the works for over $50 million dollars against the CDC regarding Lyme testing. Another ongoing suit has multiple patients up against IDSA Lyme guideline authors, insurers and the IDSA for serious injuries.
Conflicts of interest with IDSA and CDC are through the roof; too numerous to mention here.
Lack of appropriate studies. Funding continues to go to the same people with the same preconceived, failed notions. No diversity, no new theories. Examples…
- NIH clinical trial is observational only. Approved in 2001- continuing for ten more years (12/31/30). Sample size- only 500 people with new cases of Lyme disease may be accepted in the study. Treatment includes only medications approved by the Food and Drug Administration, given according to accepted dose schedules that we’ve known have been failures over the past four decades. All diagnostic tests and treatments will be administered according to standard medical practice for the disease. No experimental procedures will be offered under this protocol. https://www.clinicaltrials.gov/ct2/show/NCT00028080
- Xenodiagnosis- Hu & Wormser. Previous study already determined infected patients did pass Lyme disease to uninfected ticks. Repeat of original study, original players. Estimated enrollment- 240 people. Beginning July 24, 2015- to estimated ending date of December 1, 2021. https://clinicaltrials.gov/ct2/show/NCT02446626
Corona Virus – Four Months
In Four Months: Tests have been developed by multiple companies and government labs both here and world wide and are currently in use. Lab tests do not require approval by the FDA. FDA states if paperwork and documentation are not completed the tests can still be utilized.
Multiple Virtual Town Hall Meetings- government sponsored- to help educate doctors and labs. Internet and communication programs are at capacity attempting to get messages out to the public, government officials and people world wide 24/7. Daily detailed official briefings.
Strong warnings from the government- tests may produce false negatives and antibody tests are of “limited value”.
Four Months – IDSA Coronavirus Guidelines Produced (Updated Regularly) Over 60 pages. Seven Recommendations. Multiple grafts and charts. Over 70 references. Guidelines are open to treatments that have not been tested by putting patients in an ongoing clinical trial to gather data to form conclusions later. Guidelines are “posted as a living document that IDSA will update in response to rapidly emerging evidence. Regular, frequent screening of the literature will take place to determine the need for revisions based on the likelihood that any new data will have an impact on the recommendations. If necessary, the entire expert panel will be reconvened to discuss potential changes.” Infectious Diseases Society of America Guidelines on the Treatment and Management of Patients with COVID-19 Published by IDSA, 4/11/2020. [https://www.idsociety.org/practice-guideline/covid-19-guideline-treatment-and-management/]
Produce Studies As You Go Plan- “The panel expressed the overarching goal that patients be recruited into ongoing trials, which would provide much needed evidence on the efficacy and safety of various therapies for COVID-19, given that we could not make a determination whether the benefits outweigh harms for most treatments.”
Lyme Disease- Slower than dirt. Coronavirus- Faster than a speeding bullet.
References & Additional Information
In Less Than Four Months- New IDSA Coronavirus Guidelines- An expert panel of infectious diseases clinicians, pharmacists and other specialists convened by the Infectious Diseases Society of America has released guidelines for treatment and management of patients with COVID-19 with seven recommendations regarding the use of investigational treatments. [https://www.idsociety.org/practice-guideline/covid-19-guideline-treatment-and-management/]
FAQ- Do tests need to be validated by the FDA? Tests, including serology tests, being offered prior to or without an EUA under a policy outlined in the Policy for Diagnostic Tests for Coronavirus Disease-2019, have not been reviewed or authorized by the FDA. As stated in the guidance, all such tests should be validated by the developer prior to being offered for clinical use. The FDA has provided regulatory flexibility regarding the independent check by FDA for antibody tests that are limited in their clinical applications, but still expects all developers to validate their tests prior to offering them for limited clinical uses. https://www.fda.gov/medical-devices/emergency-situations-medical-devices/faqs-diagnostic-testing-sars-cov-2
Can I offer my new test for testing patients before it has been approved by FDA? Commercial manufacturers that develop a test kit and laboratories that are planning to test patient samples with validated tests for clinical use prior to completion of an EUA should refer to the Policy for Diagnostic Tests for Coronavirus Disease-2019, which recommends, among other things, including information along the lines of the following statements in test reports:
- This test has not been reviewed by the FDA.
- Negative results do not rule out SARS-CoV-2 infection, particularly in those who have been in contact with the virus. Follow-up testing with a molecular diagnostic should be considered to rule out infection in these individuals.
- Results from antibody testing should not be used as the sole basis to diagnose or exclude SARS-CoV-2 infection or to inform infection status.
- Positive results may be due to past or present infection with non-SARS-CoV-2 coronavirus strains, such as coronavirus HKU1, NL63, OC43, or 229E.
FAQ- I am developing a test. Do I need to have all of my validation and documentation completed before engaging with the FDA? We encourage you to reach out to us at [email protected] to begin pre-EUA discussions, even if you do not have your validation and/or documentation completed. We can work with you on the best approach for completing your validation, documentation, and submission of your EUA request.
Testing Limitations- Serology tests that detect antibodies may detect different types of antibodies. The most common are IgM and IgG. A positive result from an appropriately validated serology test that detects IgM is likely to indicate that someone currently has or has recently had the virus. But a serology can yield a negative test result even in infected patients (e.g., if antibody has not yet developed in response to the virus) or may be falsely positive (e.g., if antibody to a coronavirus type other than the current pandemic novel strain is present). Thus, antibody tests by themselves are of limited value in the immediate diagnosis of a patient where COVID-19 infection is suspected.
Are antibody tests used to diagnose SARS-CoV-2 infection? FDA is not aware of an antibody test that has been validated for diagnosis of COVID-19 infection. While FDA remains open to submissions of these tests for such uses, based on the underlying scientific principles of antibody tests, we do not expect that an antibody test can be shown to definitively diagnose or exclude COVID-19 infection.
Lyme Disease
CDC currently recommends a two-step testing process for Lyme disease. Both steps are required and can be done using the same blood sample. If this first step is negative, no further testing is recommended. If the first step is positive or indeterminate (sometimes called “equivocal”), the second step should be performed. The overall result is positive only when the first test is positive (or equivocal) and the second test is positive (or for some tests equivocal). Before CDC will recommend new tests, they must be cleared by the Food and Drug Administration (FDA). https://www.cdc.gov/lyme/diagnosistesting/index.html
Six CDC News Releases in 10 days
https://www.cdc.gov/media/archives.html?Sort=Article%20Date%3A%3Adesc#search-press-releases None on Lyme Disease
https://www.cdc.gov/media/archives.html?Search=Lyme%20Disease&Sort=Article%20Date%3A%3Adesc&Public%20Health%20Category=Healthcare%20Associated%20Infection&Release%20Type=Press%20Release One Lyme disease press release in 2016- No others in the past decade.
https://www.cdc.gov/media/releases/historical-news-releases.html
Treatment trials for post-Lyme disease symptoms revisited. “Based on this analysis, the conclusion that there is a meaningful clinical benefit to be gained from retreatment of such patients with parenteral antibiotic therapy cannot be justified.” Mark S. Klempner, M.D.,1 Phillip J. Baker, Ph.D.,2 Eugene D. Shapiro, M.D.,3 Adriana Marques, M.D.,4 Raymond J. Dattwyler, M.D.,5 John J. Halperin, M.D.,6 and Gary P. Wormser, M.D.7https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4075423/
National Institute of Allergy and Infectious Diseases (NIAID) Studies https://www.niaid.nih.gov/clinical-trials/lyme-disease-studies
Lucy Barnes, Director
Lyme Disease Education & Support Groups of Maryland
Susan R. Green
I am an attorney and also a Lyme survivor. In December 2017, I attended the first meeting of the tick-borne disease working group. I addressed this committee regarding the impediments to access of care. In my statement, I documented how, after contracting Lyme disease, I had been denied adequate treatment to address my condition.
I witnessed first-hand the persecution of physicians who were on the front lines battling Lyme disease. As a malpractice attorney, it was alarming to me to see a group of physicians being singled out and held to a standard of care that was narrowly determined by one group while ignoring other available standards. These physicians were held to a standard far stricter than their peers, a standard that was nearly unattainable. I began defending their licenses against spurious charges put forth by medical boards.
In 2017, I testified before the access to care committee 45 minutes, detailing the perils facing our doctors and the resulting lack of access to care for Lyme patients. Not a word was included in the report to congress.
We now face another pandemic whose virulent nature is so severe that it has an alarming death rate. Regretfully, what i complained about in 2017 has not changed.
Early on in this pandemic, the drugs Plaquenil and Zithromax, drugs commonly known to the Lyme community, were singled out for their efficacy in treating early disseminated covid-19. The anecdotal reports and clinical evidence demonstrated in early infection were resoundingly positive. The CDC warned physicians of the need for trials to study Plaquenil and directed doctor not to prescribe it. They went onto extol the potential risks and dangers of the drug, despite the fact that this medication has been around for decades and has been dispensed like candy for the treatment of Rheumatoid Arthritis, Lupus and Babesia.
We witnessed governors, the CDC, NIH, doctors following the CDC directives; pharmacies and insurance companies agreeing to deny access to medications that were perhaps the one chance that patients had for a positive outcome.
I have stood before many a legislative body promoting laws to protect patients only to be told by those legislative bodies that it is not the province of the legislature to practice medicine directing doctors as to what they must do. When outsiders come between the relationship of physician and patient, they are engaging in the unauthorized practice of medicine. Only the physician sees the patient, takes a history, performs an examination, is aware of comorbidities and yet somehow your local pharmacist feels that they have more entitlement to dictate medical care then that trained physician.
The time of covering up interference in that sacrosanct physician-patient relationship is over! Lyme patients have suffered this interference for decades without recourse! Today however, the spotlight is on the covid-19 virus. The world has seen how governmental bodies have conspired to interfere with their relationship with their physicians.
This is not what medicine was meant to be and is an affront to the privacy and the rights of every citizen. I asked you then and i appeal to you now! unfetter the hands of the physicians risking their lives and their licenses on the front line of battling Lyme and other pandemics and let them determine within the sanctity of the physician/patient relationship, the best course of treatment for a positive outcome so that we can prevent unnecessary deaths and suffering.
On May 30, 2018, President Trump signed into law a Right to Try bill authorizing patients with a potential terminal illness to utilize treatments that were in development phase. The FDA approved Plaquenil and Zithromax for trials in the treatment of Covid-19. Despite this law and despite the FDA approval, many have been prevented from access to the medication. Citing trials and risks, the CDC sat on physicians, discouraging them from utilizing the medication. This was disingenuous and caused countless lives to be lost.
In the long run, patients need to be informed! There must be good informed consent, but once that is done the patient/physician relationship must prevail, free from the interference of government and commercial interests. It is my extreme hope that my comments will finally make it into the report to congress so it can consider real change and patients will finally be able to rely on the wisdom and care of their physicians. In conclusion, I am sad to say that my warning of 2017 went largely unheeded! If anything, the Covid-19 pandemic demonstrates greater interference and abused rights of the American patient. I ask this committee to focus on access to care and to remove the impediment that patients face in obtaining the right to try medications and protocols that may be life-saving or life altering for them.
Susan R. Green
Legislative Counsel, NatCapLyme
IDSA
The Infectious Diseases Society of America (IDSA) is writing to provide input to the Tick-borne Disease Working Group in preparation for its April 27 meeting at which it will review the work of the Public Comment and Federal Inventory Subcommittees and the chapters being developed for the 2020 report to Congress. IDSA strongly urges the Working Group to ground all its recommendations in the best available scientific evidence.
IDSA is the largest infectious diseases medical society in the United States, representing more than 12,000 physicians, scientists, public health practitioners and other health care professionals specializing in infectious diseases. Our members care for patients of all ages with serious infections, including tick-borne diseases. IDSA members focus on the epidemiology, diagnosis, investigation, prevention, and treatment of infectious diseases in the U.S. and abroad. We have sincere concern for patients who suffer from both short- and long-term effects of Lyme disease and other tick-borne diseases, and our goal is for all patients to achieve the best possible outcomes. We would be happy to serve as a resource for any issues surrounding tick-borne diseases.
IDSA supports the recommendations of the following eight subcommittees discussed at the March 3-4, 2020 Working Group meeting:
Rickettsiosis; Ehrlichiosis and Anaplasmosis; Babesiosis and Tick-Borne Pathogens; and Alpha-Gal Subcommittees – IDSA has routinely expressed strong support for more funding and research into epidemiology and prevention, as well as the underlying causes of the increasing burden of tick-borne diseases. IDSA has also repeatedly advocated for more research to develop improved diagnostics for Lyme disease and other tick-borne diseases. Tests that can more accurately indicate the presence of infection, especially in the earliest phases of the disease, and that can distinguish between past and current infection as well, will provide the information to help health providers better manage patients.
Training, Education, Access to Care, and Reimbursement Subcommittee – IDSA urges that any curricula for clinicians-in-training and continuing medical education be based on well-designed clinical and experimental studies on Lyme disease and other tick-borne diseases reported in peer-reviewed scientific journals in order to produce the best outcomes for patients and to prevent unnecessary harm.
Pathogenesis and Physiology of Lyme Disease; Clinical Aspects of Lyme Disease; and Tick Biology, Ecology, and Control Subcommittees – IDSA continues to support additional funding and research to better inform the diagnosis, pathogenesis, and management of Lyme disease, as well as to further investigate non-tick bite transmission. IDSA also supports clinical trials and epidemiology studies to better understand early and persistent Lyme disease. Finally, IDSA supports funding to boost public health infrastructure for tick management, expansion of tick surveillance, and implementation of One Health efforts.
We encourage the Working Group to continue to adhere to the standard of only using evidence from well-designed studies reported in peer-reviewed scientific journals and to not allow anecdotal evidence or research from poorly-designed studies and ad hoc reports to be used as citations either in the reports or in any other documents produced by the Working Group. We strongly urge that any recommendations in Working Group documents be supported by the best and most current research available. Relying on anecdotal evidence to support prolonged antibiotic treatment or other therapy for the treatment of Lyme disease is inappropriate, ineffective, and has been shown to cause harm to patients.
IDSA thanks the Working Group for its attention to tick-borne diseases and looks forward to the opportunity to help inform and advance evidence-based policy that will best serve the interests of patients and public health.
Andrea Jackson
The Tick-Borne Disease Working Group, TBDWG, is NOT striving to meet its mandate and is not working towards creating recommendations and reports that are in the best interest of Lyme patients. We are watching and do understand what has been done to thwart what should be and should have been the un-manipulated progression of Lyme Disease medicine. 45 years of corruption and manipulation of Lyme Disease medicine is 45 years too many. Those corrupting and manipulating Lyme medicine have benefitted from and counted on the disabling nature of Lyme disease. Now there are too many of us to be ignored and as we have grown in numbers, we will likewise grow in a combined-strength which will enable us to reach the public and inform them of this 45-year history of disease-manipulation for personal profit and political gain. The outrage over the 4 decades of Lyme-medicine corruption and manipulation will soon be realized by the world.
Lyme DOES destroy whatever organ or system it invades and eventually the immune system. This may not be known by many YET, but it is a FACT KNOWN by those manipulating Lyme and any practioner who understands Lyme and the immune system. It will soon be known to many throughout the world as the U.S. CDC’s “No Test, Bad Test” agenda has resulted in MILLIONS across the world having gone undiagnosed for Lyme disease while the illness has ‘quietly’ or ‘not so quietly’ made them immune compromised and now at risk for Corvid-19. Due to the nature of undiagnosed Lyme’s impact on the immune system, many will not have symptoms until they have a serious illness (like the coronavirus which has reached pandemic numbers across the world). The CDC has promoted failed Lyme testing and bad guidelines that the rest of the world has adopted, and that has caused those millions of immune compromised to be now at-risk and likely to become sick with Lyme symptoms if they survive corvid-19.
Governments and people across the world are learning that the U.S. CDC and other health agencies have not performed well and they will be primed to learn of more evidence of its failings, due to circumstance (the pandemic is made much worse due to CDC’s Lyme agenda that has resulted in millions becoming immune compromised and at risk) or continued CDC failings (i.e. producing coronavirus testing in a “non-clean” room/setting and leaving the country and world without valid testing for weeks or months). Soon the world will be looking at the TBDWG-federal-agencies’ performance & will learn the following.
The CDC & other federal agencies base their support of false “Lyme myths” on statistics contrived from testing now proven to give false negatives to 71%. Always known low to anyone who did not take the CDC’s word for it & who used some logic (the CDC test is an antibody test & Lyme makes you stop producing antibodies), the CDC-Lyme test’s giving 71% false negative has recently been proven by Bay Area Lyme, a very reputable organization who even used the CDC’s standard of an EM rash and exposure criteria in their study. For decades, the CDC pushed doctors to not test unless in a state labeled as “high incident states” & required that if they did test, they must use the 71%-false-negative test. ALL the Lyme statistics used to push Lyme myths have been based on this failed testing. The TBDWG agencies reps refuse to re-educate the doctors and public that they have ensured believe: Lyme is rare and easy to cure, only occurs in a few areas, does not exist in a persistent form, can’t be passed from mother to child or between partners, and does not require long-term antibiotics to address in its persistent form.
The #CDC refused to re-educate doctors, saying it will “confuse them” and that acute cases are more prevalent and what matter - not the millions of persistent cases they ENSURED have become VERY sick due to CDC’s ‘No Test, BadTest’ agenda. Furthermore, all the agencies refuse to address the need to study Lyme being passed from mother to child or between partners because they say that these cases would be rare. That notion is again based on EXTREMELY artificially low reported cases due to the CDC’s No Test, Bad Test agenda. Millions potentially infecting others IS A VERY BIG DEAL!
The Federal bureaucrats put Shapiro onto the TBDWG in a “patient vote” even though he is known to work against patient interest, support ridiculous Lyme myths that no person with adequate medical training would, and is a named defendant in the biggest medical corruption case in history, which has 4 insurers settling (allegedly having paid a handful of “researchers” and the IDSA to make Lyme tests fail and alter Lyme guidelines so the health insurers would not have to pay claims). The feds of the TBDWG have even voted on Shapiro’s behalf (only feds doing this), demonstrating that he was put in a patients’ vote to ensure the fed-bureaucrat control over Lyme medicine that has resulted in 45 years of corruption and manipulation at the cost of the health, finances, and lives of millions. (The CDC also defends its pushing of IDSA guidelines (another defendant) for several decades and said that to inform doctors of the problems with those guidelines or to just present them with new guidelines will confuse them.)
The CDC and other federal agencies push that epidemiology studies should come before testing development and treatment studies when they have been pushing that for decades and have yet to be satisfied and ignore good and valid studies that don’t perpetuate their myths. They continue to vote down subcommittee recommendations that will end the suffering of Lyme patients and advance Lyme medicine. The TBDWG fed-bureaucrats have repeatedly used faulty logic to deny subcommittee recommendations. They seem to believe Lyme patients can not see through the false-logic they present as reasoning or they assume we can’t do anything to stop them, since we haven’t been able to for 45 years.
TBDWG Perpetuating Myths
In the TBDWG’s March, 2020 meeting, although they finally had a brave and moral member speak out about the falsities that have been encouraged (or worse) by the CDC & others for decades, the federal agency representatives voted in many cases to perpetuate false “Lyme myths” rather than stop the 45-year-derailment of Lyme medicine by these falsehoods. In the TBDWG’s January 28, 2020 meeting, Dr. Sam Donta articulately presented the falsities of the “Lyme myths”, myths that the CDC and other agencies have promoted for DECADES. Truths Dr. Donta and other have proven & documented as true:
- Lyme Disease is NOT rare and easy to cure;
- CDC-Lyme testing is abysmal with a 71% false-negative rate and results in 1.) MANY patients (millions!) going undiagnosed for years and decades (resulting in their becoming much more impacted by this illness which disables at least 40%, but likely many more- one of the facts conveniently (for some) hidden due to the decades of CDC telling doctors not to test and if do requiring a failed-test) and 2.) MANY patients being told they no longer have Lyme disease due to a false-negative test result from a test that is now proven to give false negatives to 71% (see Bay Area Lyme’s article “New Study Shows Less Than One-Third of Lyme Disease Test Results Are Accurate….”);
- Persistent-Lyme disease cases ABSOLUTELY occur and in great numbers;
- Long-term antibiotic treatments the CDC has discouraged for DECADES are absolutely appropriate for persistent cases (conveniently not included in the meeting summary is Dr. Sam Donta’s discussion of studies which are cited as evidence that long-term antibiotics do not work -these very flawed studies have been cited for years and anyone with a very basic understanding of science (or logic) can see that they are flawed, for instance providing a course of 6 or 8 weeks of antibiotics and then surmising that the failure of the flawed courses to bring about improvement equates to “if 2 months of antibiotics doesn’t help, more certainly won’t.” Dr. Donta explained that he had protested that the studies were very flawed and their results and conclusions would be meaningless and the researchers still carried out the studies, which are now used to support a false-theory that harms persistent-Lyme patients and has resulted in the persecution of doctors who have been ridiculed, ostracized, villainized, and had licenses taken;
- Other Lyme-myths are also unfounded (illogical) and research is greatly needed to understand these mechanisms of Lyme transmittal, such as the congenital transmission of Lyme disease (from the mother to child) and sexual transmission of Lyme disease between partners (Lyme is a spirochete, just as is syphilis (sexually transmitted). Fed-bureaucrats act like the numbers of cases from these transmittals are small and therefore of no importance, but the ability of MILLIONS transmitting to MILLIONS of OTHERS Is by no means a small number of cases.
The March, 2020 TBDWG meeting was filled with example after example of federal representatives ignoring the evidence that Dr. Donta and many others have presented. They ignored the sound medical evidence that is known and was just presented to them in January, & that fills the subcommittee reports, and made their lame justifications prior to voting against recommendations that would actually benefit Lyme medicine advancement and improve the lives of Lyme patients.
Lyme Surveillance & Testing
Also in the January, 2020 and March, 2020 TBDWG meetings, the CDC representative appeared to be “passing the buck” for very low case-reporting by stating that CSTE is responsible for reporting Lyme case numbers. CSTE, the Council of State and Territorial Epidemiologists, is not a government agency and the country’s government agency in charge of the public’s health should be responsible for disease surveillance (it shouldn’t take DECADES to acknowledge an issue with surveillance and in this case, the lack of diagnosis due to flawed surveillance dictated by the CDC). CTSE has always been constrained by the flawed surveillance agenda and criteria that was stipulated by the CDC. CTSE has no control over the Lyme case definitions and CDC Lyme agenda of “No test and bad test.” The CDC ensured the numbers of Lyme cases reported over the last 45 years were low and false – with their ‘No Test, Bad Test’ policy.
CDC’s No Test and Bad Test Agenda: Perpetuating the Myths & Falsifying the Stats
All the perpetuated “Lyme myths” that have caused the devastation of Lyme patients’ lives is due to CDC’s ‘No Test, Bad test’ policy/agenda. CDC has admittedly pushed doctors to only test in states labeled as “high incident (for Lyme) states”. The required CDC test is patented by employees (who benefit from its use (through their finances and resumes?). This is a perfect example of technology transfer GONE WRONG! You don’t put those owning a technology in charge of medical policy! This REQUIRED CDC test has always been suspected to fail often, at rates of 40 to 60% false negatives. A Bay Area Lyme study recently published shows the CDC Lyme test to give false negatives to 71%! So, doctors are told not to test except in the states where Lyme was first documented and then labeled as “high incident states” and then doctors were required to use a test that gives false negatives to 7.1 out of every 10 people!
How does this NOT ensure that states labeled as “low incident states” remain labeled as “low incident states”? How does this not ensure that millions of people with Lyme have gone and do go undiagnosed in every state? At a false negative test rate of 71% and lack of testing due to doctors being pushed not to test, ANY AND EVERY STATISTIC published by the CDC or others is also absolutely false!
Another criteria for testing pushed by the CDC has been the required presence of the EM rash. The myth that an EM rash is present in a given percentage of Lyme patients is based on CDC propaganda and failed CDC testing. Before it was known that the CDC test gives false negatives to 71%, the EM rash was thought to be present in 40 – 60% of cases. Its MUCH less than that since there are MANY more patients with Lyme disease than every known and most of those did not present with an EM rash. The presence of an EM rash should never have been used as a hard-requirement for Lyme diagnosis and its certainly clear now that MANY don’t present with the EM rash, but yet again, the TBDWG will not adapt education.
The presence or absence of Lyme disease in treated patients, said to no longer have active Lyme disease, is again based on failed CDC testing. The testing of treated Lyme patients has doctors concluding 7.1 out of every 10 patients no longer have Lyme - when they do! The CDC statistics are all based on the CDC failed-test results, which are much less valid than is chance. The CDC does not know where Lyme Disease occurs or where it does not. They do not know who has Lyme and who does not. THE CDC HAS ENSURED MILLIONS GAVE GONE AND GO UNDIAGNOSED for the last 45 years.
The CDC publishes that there are 30,000 newly documented Lyme cases per year but claims they expect there are ten times that number at 300,000 new cases per year. But how many actual new and persistent cases are there when 1.) CDC testing is now proven to give false negatives to 71% and 2.) MANY patients do not know to get tested or have doctors that are unwilling to test due to CDC’s ‘No Test, Bad test’ agenda (doctors told not to test in MOST states or told not to test if there is no EM rash). If the tests didn’t fail, would the CDC’s 30,000 new cases per year be 103,448 documented new cases and their 10-fold estimated case number be 1,034,482 new Lyme cases per year? (And over 1 million per year for how many of the last 45 years?) At over a million new cases per year, this number does not capture the many that are never tested due to CDC’s ‘No Test, Bad Test” policy. This has been the case for over 40 years. Lyme cases have been GREATLY underestimated and many forced to endure significant illness, excruciating pain, prejudice, and very bad treatment by doctors due to CDC’s ‘No Test, Bad Test’ policy!
Number and Importance of Persistent Lyme Cases
Over the last 45 years of CDC’s ‘No Test, Bad Test’ agenda and propaganda, how many MILLIONS have gone undiagnosed? Furthermore, since the CDC Lyme test tells 71% that they do not have Lyme when they do, how many who have undergone a short course of antibiotics have been told they no longer have active Lyme when they do? Dr. Sam Donta, an expert who Lyme patients believe is much more qualified to determine the future course of Lyme medicine and politics than the bureaucrats of the CDC and other federal agencies, said that Lyme testing fails, persistent Lyme occurs, and long-term antibiotics are needed for persistent Lyme treatment. Even the CDC admits that persistent Lyme occurs but they also stated in the March, 2020 meeting that “acute Lyme is what matters and there are many more acute cases than persistent cases,” and refuse to re-educate doctors or the public with facts many now acknowledge as true, including them.
Even the most dim-witted person can see that after 45 years, if a test fails to accurately diagnose a disease by such a HUGE percentage, before AND after treatment, and if millions of cases go undiagnosed, there are going to be MANY more persistent cases than acute cases. Also, sure, it is important to stop acute cases, but as several million Lyme patients can attest, until the CDC and other agencies FULLY acknowledge and tell doctors the Lyme myths they pushed for 45 years are NOT TRUE, then it doesn’t matter how much attention is placed on acute cases, they will ALL end up transitioning to persistent cases. If the CDC and other agencies would “come clean” and finally divulge how devastating and disabling Lyme is (disables at least 50%, and that’s with millions not knowing they are disabled by Lyme as they were told their Lyme tests were negative and they suffer only from another illness (that was caused by Lyme)), there would be PLENTY of money provided to advance Lyme medicine for BOTH ACUTE AND PERSISTENT CASES. The CDC falsely-contriving that ACUTE CASES MATTER MORE THAN PERSISTENT makes no sense - they DON’T “matter more” - and an agency “of the people” should not be sacrificing one group of people for another, particularly when the sacrificed group is larger, those in the smaller group will be joining those in the larger sacrificed group, and none of those in either group going will benefit from such illogical and ignorant agendas so far perpetuated by that and other federal agencies.
Result of CDC No Test and Bad Test Agenda & Propaganda
The CDC No Test, Bad Test policy has ensured MILLIONS of people have become extremely sick and disabled with no understanding or support from the public, the medical community, or private and federal disability. Patients having gone years or decades and having seen 30 to 40 doctors before finally receiving a diagnosis is not rare AT ALL. By the time they do receive a diagnosis - they have become disabled and their finances and relationships have been decimated, their organ and specific system illnesses are very advanced, and their immune dysfunction has become so advanced that they have multiple other illnesses, immune diseases, and immune-based pain (that most doctors do not realize can even happen and relief for that pain, the CDC has also ensured will be supported by no medical professionals or relieved by any pain medicines (they have ensured the states have reduced pain medicines below the amount required for pain relief)).
Summation
The federal bureaucrats & those who have helped them keep Lyme Disease medicine from advancing and ensuring millions to go undiagnosed while becoming very sick, immune compromised, & disabled (1/2) -you have no idea who you have turned us into: Survivors. We will eventually be writing the history.
Andrea Jackson
Weld County, Colorado
Lorraine Johnson
COVID-19 Patients Can’t Wait (and neither can chronic Lyme disease patients)
COVID-19 is changing the world as we know it. It will change the world for those with chronic Lyme disease too. U.N. Secretary-General Antonio Guterres now warns that with COVID-19, the world faces its most challenging crisis since World War II in terms of human suffering, deaths, and economic disruption. Patients need treatments and they need them now. The grindingly slow pace of traditional research won’t do. What we need is guerilla research that is fast, agile and “good enough” for now. Research innovation is long overdue. It will benefit all patients everywhere, including those who have Lyme disease.
In a recent Forbes interview about COVID-19, I said “It is important right now to take the gloves off clinicians and give them access to all available tools. Patients are dying and can’t wait for clinical trials.” My comment to Forbes about the need to act quickly drew some heat. Some people countered that we need evidence BEFORE we can treat and that physician reports of what treatments they see working in hospitals are mere anecdotes. Sound familiar? Since 2006, that’s what the Infectious Disease Society of America has been saying in its guidelines to deny treatment to Lyme patients who remain ill. The COVID-19 pandemics is shining a spotlight on the need to act in the face of uncertainty. Same issue, different disease.
Evidence-based Medicine, COVID-19 and Chronic Lyme Disease
Evidence-based medicine is the combination of scientific evidence, clinical judgement, and patient preferences. Researchers tend to focus on the evidence piece of the puzzle. They insist that treatment be validated in randomized controlled trials before anyone can use it.
That’s fine for researchers who aren’t sick with the disease. But for patients and the doctors who treat them, the question is what treatments are worth trying? Specifically, are the risks of any given treatment worth it, given the potential benefits? The answer to that depends in part on how sick the patient is and what their treatment alternatives are. For patients without treatment options, like those with COVID-19 and persistent Lyme disease, the amount of risk that they are willing to take on typically depends upon the severity of their illness or the degree to which their quality of life is impaired.
Real-world data collected at the bedside by clinicians, their institutions, or patients provides valuable information. Yet, it can’t demonstrate cause and effect. It can’t tell us whether a patient got well because of a particular treatment. This patient might have had a milder form of the disease, had a better immune system, or the doctor might have only given the treatment to certain patients.
To demonstrate cause and effect, randomized controlled trials (RCTs) are required. The problem with RCTs, Dr. Rob Califf, former head of the FDA explains, is that “they take too long, cost too much, and don’t apply to most people.” In a crisis, barriers like these cost lives.
Anecdotes vs Evidence: The Hydroxychloroquine Controversy
This issue of how much evidence is enough for a doctor to act has taken on new urgency and importance with the mounting death toll for COVID-19. It has erupted in full force over the innovative use of hydroxychloroquine (HCQ) (also known as Plaquenil), sometimes in combination with azithromycin (H&Z). (Doctors sometimes use these drugs to treat persistent Lyme disease, although not necessarily in combination.)
The tone of the debate around H&Z is heightened by its political overtones. President Trump has been pounding his podium saying that he has a “hunch” that the therapy could be a “game changer” and has encouraged people to use it, asking rhetorically “what can it hurt?” Meanwhile, Rachel Maddow on MSNBC derides the treatment as “scientifically unproven” and notes that (like all medical treatments) there may be side-effects, some serious. COVID-19 highlights the tension between doctors in the trenches battling illness and researchers sitting in ivory towers focusing on abstract concepts that don’t land in the real world with patients whose lives are at risk. The clinical experience of doctors is an essential form of scientific knowledge that is being dismissed by researchers who don’t bear the consequences of failing to intervene when people are sick. These researchers don’t have the burden of telling the families who have suffered a loss that they didn’t do everything they could to help. We see the divide between academic researchers and physicians who treat in Lyme disease every day, but the story has not resonated with the media or the public in the way the COVID-19 crisis does.
COVID-19 underscores the importance of clinical innovation to save lives. New therapies may take a year or so to develop. In contrast, doctors can repurpose FDA-approved drugs off-label for use with COVID-19 today. Some doctors have reported success treating COVID-19 with HCQ or H&Z—reports which researchers dismiss as mere “anecdotes.” A survey of over 6,000 doctors found that azithromycin (41%) and hydroxychloroquine (33%) are among the three most commonly prescribed treatments for COVID-19.
In a recent article, Dr. Perry Wilson, Associate Professor at Yale School of Medicine called out the false dichotomy of framing the HCQ debate as “evidence vs anecdote”:
"The bottom line is that we don't need to abandon evidence-based medicine in the face of the pandemic. We need to embrace it . . .and . . .realize: Evidence-based medicine is not just about randomized trials; it's about appreciating the strengths and weaknesses of all data, and allowing the data to inch us closer and closer toward truth. . . . We don’t have the luxury of waiting for randomized controlled trials. We need to act on the data we have. As more data come in, we can revise those estimates of efficacy, iteratively and transparently."
Wilson’s piece garnered over 129 comments about whether doctors should provide treatment that “might work” before the evidence is settled. One clinician put the need for doctors to act in stark terms: “This is war. In war, we do not wait for a RCT to see if a particular new weapon will work. If it works and kills the enemy - good. If it does not work, bad luck. If it works adversely, bad luck - the soldiers were going to die of enemy fire anyway. In the case the new weapon is in fact, an old weapon established as effective against another type of enemy, so no harm in trying it.” This is the approach many Lyme doctors take.
These arguments should sound familiar. Lyme patients and their treating clinicians have been saying this for years. We make these arguments in the context of Lyme disease in my subcommittee’s report on the federal Tick-Borne Disease Working Group (TBDWG), which spell out the need to make decisions in Lyme disease when science is uncertain.
Shared Medical Decision-Making: Doctors and Patients Take the Helm
Putting aside the political theatrics in the H&Z controversy, the full spectrum of the debate on what to do when science is uncertain is represented on the President’s own COVID-19 team. Trump’s encouragement of the use of H&Z has been branded as anti-science. At the same podium, his advisor Dr. Anthony Fauci, (the director of the National Institute of Allergy and Infectious Diseases) calls the treatment unproven. Dr. Deborah Birx, (the Coronavirus Response Coordinator) says that the decision does not belong to either President Trump or Fauci, but rather belongs to the individual patient and their doctor. This is known as shared medical decision-making.
We see this same range of views in the treatment of persistent Lyme disease, with ILADS physicians being accused of using “unproven treatments” and the IDSA asking patients to wait until the science is in. But the Lyme disease treatment research boat has not set sail for over 15 years, when the last clinical trial for treating persistent Lyme disease was funded. Unlike COVID-19, Lyme disease is a research-disadvantaged disease—with very little government or industry interest in developing new treatments. If COVID-19 research is a fire hose full blast right now, then Lyme disease research is a parched desert. The sad fact is that without incentives for research, Lyme disease is unlikely to achieve scientific certainty any time soon and patients who are sick today need treatment.
In his article, Wilson says that where the evidence is not yet in and the patient outcome is uncertain, the “key to evidence-based medicine during this epidemic is being transparent about what we know and what we don't. If we want to use hydroxychloroquine, that is a reasonable choice, but we need to tell the public the truth: We're not too sure it will work, and it may even be harmful.”
If that sounds like the calls in the Lyme community for shared-medical decision-making with patients, it is. This is one of the recommendations contained in my subcommittee’s report on the federal Tick-Borne Disease Working Group made that was adopted and will be submitted to Congress as a call to action.
Recommendation 7.1: Recommend Federal government websites and educational materials and seminars for clinicians, the public, and public health departments, which discuss Lyme disease, provide information that the state of the science relating to persistent symptoms associated with Lyme disease, is limited, emerging, and unsettled; and increase public awareness that there are divergent views on diagnosis and treatment. Consider that shared medical decision-making may be appropriate in some circumstances.
Lyme disease has always played David to the IDSA’s Goliath in terms of power. The urgency of COVID-19 has moved the debate about the need to act when patients are ill and science is unsettled and the importance of shared medical decision-making into the mainstream. Shining the COVID-19 spotlight on these issues may help Lyme disease patients obtain the treatment they need.
The COVID-19 Research Renaissance
The COVID-19 crisis is transforming the speed and way that research is conducted. One physician commented to the article by Wilson’s saying, “this pandemic can be a real eye-opener. . .[on] the need to revolutionize regulatory infrastructure and come up with innovative solutions for the benefit of our patients.” This is a call for research to enter the 21st century and begin using big data tools, including the use of research registries.
Clinician and institutional registries are being used to capture data about COVID-19 cases. For example, a preprint of a study of over 4,000 patients at one New York center from March 1 to April 2 was published within just seven days! That study analyzed associated with patients who were diagnosed, admitted, or became critically ill during that month.
This is why we launched the MyLymeData patient registry, which has enrolled over 13,000 patients. Patient have long recognized the need to accelerate research and to recognize all forms of data as useful. Data from the registry has helped determine the ground truth for Lyme patients.
There has also been a virtual explosion in the number of research trials being conducted for COVID-19. More than 160 COVID-19 treatments and vaccines are either under development or consideration. These include antivirals, antibiotics, anti-inflammatories, antibody-based treatments, and vaccines. They include drugs currently being developed as well as FDA-approved drugs that might be repurposed for treating COVID-19. And, over 300 clinical trials are listed on ClinicalTrials.gov as of April 4, with more listed every week.
COVID-19 is accelerating changes in the way trials are being conducted and the use of innovative research tools, like big data. For example, Yale, Rush University Chicago, and the University of Washington have proposed a trial called INSPIRE that will use real-world evidence in a national registry. The study is unique because it would allow data to be entered about treatment outcomes by many different stakeholders, including patients, emergency rooms, institutions, clinicians, and lab test sites. This proposed study was presentation at the NIH Collaboratory (which focuses on creating a rapid cycle learning research system).
Another study presented at the NIH Collaboratory called HERO seeks to enroll over 15,000 healthcare workers (who are at high risk of contracting COVID-19) to track their symptoms and challenges dealing with COVID-19. It will also use 40 clinical research networks—institutions like Kaiser for example—to see if using HCQ in healthcare workers prevents them from contracting the illness.
A recent commentary in the New England Journal of Medicine correctly points out that “it is a false dichotomy to suggest that we must choose between rapid deployment of treatments and adequate scientific scrutiny.” COVID-19 is showing us that we do not need to settle on a single evidence-building approach. Instead, we can and must use all the tools at our disposal to solve this problem at the same time. These tools include:
- Encouraging frontline clinical innovation on a patient to patient basis,
- Using registries to capture results of innovative clinical approaches where possible, and
- Conducting multi-site clinical trials, including RCTs, to evaluate treatment outcomes.
COVID-19 has ushered in a brave new world of research and heightened debates around the role of the doctor and patient in making health care decisions when evidence is uncertain. As COVID-19 is showing us, the full range of evidence encompasses patient experience, clinical experience, registry-gathered data of outcomes, and randomized controlled trials all exist along a continuum. Valuing one does not mean devaluing the other forms of evidence. This type of innovation is a good model for Lyme disease. When the IDSA says “let’s wait for the evidence,” patients need to push back. Because COVID-19 patients can’t wait, and neither can patients with Lyme disease.
Lorraine Johnson, JD|MBA
Chief Executive Officer, LymeDisease.org
References
Mary Beth Pfeiffer, This Coronavirus Patient Dodged A Bullet With Hydroxychloroquine. Is She A Harbinger Or Outlier? Forbes, March 22, 2020.
F. Perry Wilson, MD, MSCE, Hydroxychloroquine for COVID-19: What's the Evidence? Medscape, March 25, 2020.
Alex Philippidis,Vanquishing the Virus: 160+ COVID-19 Drug and Vaccine Candidates in Development, Genetic Engineering and Biotechnology News, April 13, 2020.
Rafel, Jesse. COVID-19 Clinicaltrials.gov Summary as of April 4, 2020.
NIH Collaboratory, April 3, 2020: Innovative Support for Patients with SARS-COV-2 Infections Registry (INSPIRE): Participant-Centered, Rapidly-Deployed, Digitally-Enabled Research (Harlan Krumholz, MD; Bala Hota, MD, MPH; Graham Nichol, MD, MPH)
Benjamin N. Rome, M.D., and Jerry Avorn, M.D., Drug Evaluation during the Covid-19 Pandemic, NEJM, April 14, 2020.
Winifred Mauga
Lyme Disease Conundrum
Another year, another decade; Lyme disease is still wrecking families, finances and futures with more adverse events...
Will your endeavors lead to outcomes favorable for the most vulnerable and sickest stakeholders? Are any of you concerned about your children's futures?
Or will a poor response by the tick borne disease working group be associated with an even higher infection rate and no valuable cure?
To date, members have failed to send a clear message about the seriousness of tick-borne sepsis. It is far more than a slight cognitive decline, a relapsing fever or an arthritic knee?
Right? lyme is a systemic demise with high resistance to many treatments. Borrelia sepsis is a chronic wasting disease causing disability and untimely deaths.
Loss of public confidence is evident. Uncertainty about this serious epidemic needs addressing. Communication and Transparency is paramount between government agencies.
First, please define the many ways Lyme disease wrecks our immune system.
Second, revisit Dearborn and the diagnostic testing standards which were used to fraudulently sell LYMErix.
It's unethical that humans are denied adequate treatment, community support, compassionate medical care or insurance coverage. It is a crime against humanity.
Lyme and Vector-borne diseases do not discriminate. They are crippling babies in utero, maiming innocent children, victimizing elderly, sickening our military service members and disabling untold numbers of citizens. Where will this madness end?
People deserve an efficient, timely and complete public health initiative to overcome this insidious disease.
TBDWG members need to contemplate decisions and attain the highest fiduciary standard possible.
Many lives depend on the outcome.
Let your words be anything but empty.
Respectfully,
Winifred Mauga
Jessie Mejia
Below are my questions for submission.
- If it's not Lyme Disease then what is it? (We have such advancements in discovering all these other disease's and rare pathogens such as COVID-19, but yet, nobody can figure out Lyme, or Co-Infections, or how to diagnose any of them)
- Will there be medications available that can reach the inner prostate or testis that can kill out-right with no immune system help; Lyme Disease and Co-Infections? When?
- I've been infected with this since Oct. 2006 and it stopped all forward progress for me. I graduated college in Aug 2007 with a Bachelors Degree in Math and couldn't even use it. I've spent soo much money on supplements, doctor visits, and medication co-pays. In light of how many people yearly get infected, why is this not declared a national emergency?
- Is Rickettsia Helvetica (aka The Swiss Agent) also being looked at as a possible serious Co-Infection? Where are the tests?
- Why do we know so little about this? And if we know a lot why haven't we had any major break through's yet?
- If I was cured I would use my second chance to become a research doctor in Lyme and Co-Infections. What are my chances that you will help make that happen?
- Their starting to sound like the over 100 doctors that I saw in the last 13 years, nothing but excuse givers. Enough Talk-More Action! What is taking soo long?
Thank you,
Jesse Mejia
Whittier, CA
Phyllis Mervine
Government Must Acknowledge Two Standards of Care
In my ideal world, a contingent of informed patients would always have a fair share of the seats at the table. The two standards of care for the diagnosis and treatment of Lyme disease would be as obvious as the nose on your face and I would feel less like Sisyphus rolling a boulder up a hill, over and over again.
But, this is life.
Sometime in 2020 we expect the Infectious Diseases Society of America (or IDSA) to publish their new Lyme disease diagnosis and treatment guidelines. There will then officially be two diametrically opposed standards of care again. The flexible, patient-centered one from ILADS works reasonably well; the IDSA’s rigid academic one fails in half the cases. Will the CDC inform the medical community? We’ve asked them to again and again for years, with no results. The CDC likes researchers better than front line clinicians.
After the IDSA published a draft of its new guidelines 9 months ago and invited public comment, LymeDisease.org’s CEO Lorraine Johnson and Dr. Betty Maloney, of ILADS (International Lyme and Associated Diseases Society) formed an Ad Hoc Patient and Physician Coalition and prepared a comprehensive response. You can access it on our website, lymedisease.org. Soon, other groups publicly endorsed it. In November 2019 a French group became the 89th group and 12th country to join the Coalition. Because you see the IDSA guidelines hurt European patients, too.
This year’s Training, Education, Access to Care, and Reimbursement Subcommittee of the Working Group and the 2018 Access to Care, Services, and Support to Patients Subcommittee urged the Working Group to address the problems presented by having two standards of care.
They said all state and Federal government web pages and all educational materials that discuss Lyme disease or tick-borne illness need to inform health care providers and the public that the science is unsettled, that there are two divergent diagnostic and treatment approaches, and that shared medical decision-making may be appropriate.
These changes are important so that patients have the opportunity to get better. The time has come to stop calling treatment “adequate” if it fails in half the patients, as the IDSA recommended treatments do. Individual variation, severity of illness, treatment response, and coinfections must be taken into account. Physicians must inform patients of treatment options so that they can make the difficult choices and get on with their lives. It can be done and it’s past time to begin. Forty years and counting.
Phyllis Mervine
President and Founder, LymeDisease.org
Carl Tuttle
Providing comments in support of the Change.org petition calling for a congressional investigation into the mishandling of Lyme disease.
Through recent events with Coronavirus we are witnessing what the Lyme community has endured for the past three decades: Faulty/misleading antibody tests, inadequate treatment, no medical training and absolutely no disease control whatsoever; a public health disaster.
Our public health officials got away with mishandling Lyme disease because Lyme does not cause dead bodies piling up in the morgue in New York City but at the same time, no one is counting the number of lives ruined by Lyme disease.
So how will our public health officials find a way to maintain the status quo of a dysfunctional system in Lyme diagnosis after this massive tragedy is over?
What is the status of Direct Diagnostic Tests for Lyme Disease Dr. Ben Beard of the CDC?
Persistent infection after extensive antibiotic treatment has been identified through the use of direct detection methods in academic centers1 and autopsy findings yet the average patient cannot obtain these tests to justify how sick they are with their chronic active infection.
There has been a deliberate avoidance of direct detection methods in order to hide the truth that Lyme disease is a life-altering/life threatening infection capable of destroying lives, ending careers while leaving its victim in financial ruin.
So once again I ask the question Dr Ben Beard of the CDC; What is the status of Direct Diagnostic Tests for Lyme Disease?
Carl Tuttle
Lyme Endemic Hudson, NH
Reference
1Seronegative Chronic Relapsing Neuroborreliosis. https://www.ncbi.nlm.nih.gov/pubmed/7796837
Kathleen Wallace
My concern is MCS or Multiple Chemical Sensitivities as a result of tick-borne disease.
The current COVID19 pandemic brings this concern into even sharper focus; sanitation requirements for the virus are not tolerable for people with Multiple Chemical Sensitivities. The sheltering in place that more of our neighbors are experiencing and the isolation - is nothing new to sufferers of this medical condition.
Since I spoke to you earlier this year, Syracuse University's Maxwell School of Citizenship and Public Affairs has taken notice of Multiple Chemical Sensitivities. A study through the Community Link Program in April, surveyed people with Lyme Disease, and among the interesting responses, 71% say they suffer from Multiple Chemical Sensitivities.(1)
The Maxwell School has the #1 nationally ranked public administration program, and hundreds of its graduates are in key positions in Federal government agencies. Continuing collaborative efforts could increase efforts on behalf of MCS sufferers, whether the result of tick- borne disease, or as research is indicating, from 9/11(2) and Gulf War survivors.(3)
It is time to acknowledge, study and research the syndrome of Multiple Chemical Sensitivities.
I offer my expertise and knowledge of living with Multiple Chemical Sensitivities as we make a difference together.
Thank you kindly for your time and consideration.
Kathleen Wallace
Upstate New York Lyme Disease Association
References
- Molly Akers, Syracuse University's Maxwell School of Citizenship and Public Affairs. How Diagnosis and Treatment of Lyme Disease Impacts Long Term Effects of Tick- Borne Illness April 2020
- Senate subcommittee chaired by Senators Joe Lieberman and Hillary Clinton on Clean Air, Wetlands, and Climate change hearing. Impacts on Air Quality of the September 11th Attacks and Possible Health Effects in the Area of the World Trade Center. February 11,2002. Dr. Steven Levin of the Mount Sinai School of Medicine. Alison Johnson, chair of the Chemical Sensitivity Foundation testimony at the World Trade Center air quality hearing held in lower Manhattan by U.S. EPA Ombudsman Robert Martin on February23,2002.
- Research Advisory Committee on Gulf War Veterans' Illness. Gulf War Illness and the Health of Gulf War Veterans : scientific findings and recommendations Washington D.C. November 2008 website: http://www.va.gov/RAC-GWVI.
Kathleen Wallace
Upstate New York Lyme Disease Association
