https://www.linkedin.com/pulse/cdcs-profile-plummets-while-15-government-authorities-luche-thayer by Jenna Luche-Thayer July 4, 2017
CDC’s Profile Plummets While 15 Government Authorities Act on Persistent and Disabling Lyme Disease
How is it that 15 government authorities have adopted policies recognizing Lyme disease as a serious illness, easily incurred through common outdoor activity, that may have systemic and chronic disabling complications? These authorities acknowledge that delayed treatment may be ineffective once the disease is systemic, that a delay in diagnosis may result in severe and chronic complications and prolonged antimicrobial treatments may be required. They acknowledge it may result in loss of livelihood and severe financial hardship.
When did other federal agencies decide that CDC Lyme information was insufficient? Was it due to some failing rationale created to tamp down public fears of the epidemic for which the CDC has no clear strategy to control or cure?
Why are CDC views regarding Lyme now the minority among federal authorities and yet still ‘the rule’ for insurance reimbursements and treatment protocols? Is it because many of the CDC officials who are decisions-makers for Lyme disease policies are members of the Infectious Diseases Society of America (IDSA)? Is there is a connection to the fact that some IDSA members who wrote the 2006 Lyme treatments guidelines Lyme also support health and disability insurers against claims made by Lyme patients?
Are there wrongful financial motives related to IDSA/CDC pending patented vaccines driving this behavior?
Is it tied to the CDC performance metrics regarding global vector borne diseases? Borreliosis infections are pandemic and include Lyme and relapsing fever borreliosis. These metrics do not measure the reduction in vector infections or deaths, nor does it track improvements in treatments. It only measures how many CDC reagents (CDC patented products $$) are used on a global scale.
Whatever the reasons, the CDC’s Lyme policy stands in baffling contrast to the following 15 government authorities, including : the United States Department of Health and Human Services, Office on Women’s Health, Agency for Healthcare Research and Quality, National Guideline Clearinghouse, Office of Personnel Management, Executive Office of the President, US Department of Veterans Affairs Center for Innovation, US Department of Agriculture, US Department of Commerce, National Institute of Standards and Technology, US Department of Labor, Occupational Safety and Health Administration, US Department of State, US Department of Transportation and Federal Aviation Administration.
Most importantly, when will the CDC adopt the updated science that informs these other federal agencies? Details now follow:
(1) United States Department of Health and Human Services (HHS) YES, recognizes persistent and complicated Lyme disease – see Nos. 2 – 4
(2) HHS’s Office on Women’s Health YES, recognizes persistent and complicated Lyme disease
Nicole Greene serves as Deputy Director for the United States (US) Department of Health and Human Services’ Office on Women’s Health (OWH) and acts as the primary advisor to the Deputy Assistant Secretary for Health — Women’s Health. She oversees all administrative, financial and strategic planning as well as program and management operations, including the Office’s annual $33 million budget and related Congressional Justifications.
Ms. Greene also serves as an OWH spokesperson and raises awareness of Lyme disease and related illnesses by sharing her own experiences with Lyme.
[excerpted from her blog ] “On Easter Sunday 2007, I woke up unable to move from the neck down. My doctor tested me for all sorts of things: lupus, fibromyalgia, chronic fatigue syndrome, multiple sclerosis, sickle cell disease. But only one test came back positive: Lyme disease.
After my diagnosis, I thought through my entire medical history. I realized that I had actually had a lot of symptoms — I just didn’t know they were symptoms. I was sick all the time. None of my doctors ever put all of my symptoms together. But once I was diagnosed with Lyme disease, it all made much more sense.
I immediately went on antibiotics, which wiped me out so much that I couldn’t go into the office, or even the grocery store. I was lucky to be able to work from home, but many people don’t have that option. For almost a year, I missed a lot of things — my friends, family, birthday parties, celebrations, saying goodbye to loved ones who passed away. That first year was really hard.
Even after I started feeling better, my body wasn’t completely well… I’ve dealt with sciatica, a spinal lesion, neuropathy, temporary hair loss, cognitive issues, stress fractures in both knees … Lyme has affected my body, my work, and my relationships.
… I had no idea there even were Lyme specialists! Through him, I’ve learned about chronic Lyme disease, its co-infections, and new options for treatment… A lot of Lyme-literate doctors don’t take insurance, and all of the appointments, blood work, and treatments are out of pocket and very expensive. …my family and I have made sacrifices to ensure that I have the resources to make those choices… It’s been 15 years now, but I’m finally living with my Lyme disease.”
(3) HHS Agency for Healthcare Research and Quality (AHRQ) YES, recognizes persistent and complicated Lyme disease
AHRQ is the lead Federal agency charged with improving the quality, safety, efficiency, and effectiveness of health care for all Americans. AHRQ promotes evidence-based decision-making.
The AHRQ’s Effective Health Care Program facilitates collaboration among individual researchers, research centers, and academic organizations to assist the AHRQ to produce effectiveness and comparative effectiveness research for clinicians, consumers, and policymakers.
In 2011, AHRQ adopted the updated and internationally accepted Guideline criteria developed by the Institute of Medicine (IOM). On March 21, 2012, a series of questions were sent to the AHRQ’s Effective Health Care Program regarding treatment protocols for chronic Lyme.
The International Lyme and Associated Diseases Society (ILADS) then revised their Guidelines to meet these new evidence-based criteria. ILADS recognizes and treats chronic Lyme.
The Infectious Diseases Society of America (IDSA) recommends restricted treatments (two to four weeks) of antibiotics for Lyme infection and does not recognize chronic Lyme. The IDSA Lyme treatment guidelines have been delisted by the AHRQ because they are outdated and do not meet the international standards set by the IOM. The CDC solely promotes the 2006 IDSA Lyme treatment guidelines.
(4) National Guideline Clearinghouse (NGC) YES, recognizes persistent and complicated Lyme disease
[from the AHRQ website] The National Guideline Clearinghouse™ (NGC) is a publicly available database of evidence-based clinical practice guidelines and related documents. It provides Internet users with free online access to guidelines at http://www.guideline.gov. Updated weekly with new content, the NGC is produced by the AHRQ in partnership with the American Medical Association (AMA) and the American Association of Health Plans (AAHP) Foundation.
ILADS revised their guidelines September 2014 and the updated clinical practice guidelines are officially posted on NGC Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease.
As of July 4th, 2017, the NGC is currently working on 65 guidelines that have met the NGC Inclusion Criteria. The IDSA has had since 2011 to update their 2006 guidelines for treating Lyme and have yet to meet the inclusion criteria.
(5) Office of Personnel Management (OPM) YES, recognizes persistent and complicated Lyme disease
The United States OPM is an independent agency of the United States government that manages the civil service of the federal government. Currently, the OPM has ‘enforcement responsibility’ for key health care laws – such as protection of access to evidence-based care for those with chronic illnesses.
From the OPM website, “National Healthcare Operations (NHO) is the OPM component responsible for implementing and overseeing the Multi-State Plan (MSP) Program, which was established under the Affordable Care Act (ACA). In this role, NHO reviews potential MSP issuer applications and certifies MSP options, which are then made available for sale on the Health Insurance Marketplace. MSP options are among the health insurance choices for individuals and small employers on HealthCare.gov. NHO is responsible for all functions related to the MSP Program: outreach and communications, engagement with State regulators, MSP issuer support and evaluation, policy analysis, contracting, and external review (appeals).”
In this manner, OPM reviewed insurers for acceptance in the ACA ‘healthcare marketplace’. As defined in the ACA, a Qualified Health Plan (QHP) is an insurance plan that is certified by the Health Insurance Marketplace, provides essential health benefits (EHBs), follows established limits on cost sharing, and meets other requirements outlined within the application process.
Every state that formed a Health Insurance Exchanges provided an example of an insurance company and plan that they wanted to have as the standard or “benchmark plan” that set the criteria for all other QHPs in the Health Insurance Marketplace.
By September 2012, an insurer known as ConnectiCare, was reviewed and sanctioned by OPM via QHP EHB and all other necessary criteria as a benchmark plan. ConnectiCare specifically recognizes ‘chronic Lyme’. Acceptance of the ConnectiCare insurer into the ‘healthcare marketplace’ by OPM/NHO also means that ‘chronic Lyme’ is acknowledged as a chronic disease, and as such, meets the specific protections under the ACA.
(6) Executive Office of the President (EOP) YES, recognizes persistent and complicated Lyme disease
The EOP was created in 1939 by President Franklin D. Roosevelt to provide the President with the support needed to govern effectively. The EOP has responsibility for tasks ranging from communicating the President’s message to the American people to promoting our trade interests abroad. Overseen by the White House Chief of Staff, the EOP has traditionally been home to many of the President’s closest advisors including: Council of Economic Advisers, Council on Environmental Quality, Office of Management and Budget, Office of National Drug Control Policy, Office of Science and Technology Policy , Executive Residence, National Security Council, Office of Administration, Office of the Vice President, etc..
The previous Obama administration acknowledged persistent and complicated Lyme. For example, Kristen T. Honey, PhD, PMP, former Policy Advisor to the White House Office of Science and Technology Policy and spokesperson for Lyme, including persistent and complicated Lyme cases and Mentor of the Lyme Innovation 2016 Hackathon.
(7) US Department of Veterans Affairs Center for Innovation (VACI) YES, recognizes persistent and complicated Lyme disease
The VACI identifies, tests, and evaluates new approaches to efficiently and effectively meet the current and future needs of Veterans through innovations rooted in data, design-thinking, and agile development.
VACI supported the Lyme Innovation 2016 Hackathon . The Lyme Innovation 2016 Hackathon gave awards to address chronic Lyme. For example, the Finalists and Recognition Awards on June 16, 2017 in Cambridge, MA. Finalists included: Utilize the University of Massachusetts Plant Cell Culture Library to screen for plant extracts that can eliminate Borrelia persister cells (chronic or persistent Lyme infection).
(8) US Department of Agriculture (USDA) YES, recognizes persistent and complicated Lyme disease
The USDA is the federal executive department responsible for developing and executing federal laws related to farming, agriculture, forestry, and food. The USDA webpage for Lyme infection details possible tests – beyond the CDC recommended Elisa and Western blot – that may validate a clinical diagnosis for Lyme infection. It also describes an illness that may have debilitating, serious and persistent symptoms that are difficult to treat. It does not say these symptoms should not be treated.
“Clinical disease in humans: Lyme disease is a multisystem illness involving the skin, nervous system, heart, and joints. Initially, symptoms resemble the onset of influenza, including severe headache, fatigue, joint and muscle pain, fever and possibly swollen lymph glands. … Later stage symptoms may occur weeks after a tick bite and are more severe, including neurological complications such as facial palsy, irritability … poor motor coordination … cardiac problems including irregular heart beat and varying degrees of heart blockage… Third stage Lyme disease … may involve chronic arthritis or chronic neurological effects … later stages are more difficult to treat.”
(9) US Department of Commerce YES, recognizes persistent and complicated Lyme disease – see No. 10
(10) National Institute of Standards & Technology (NIST) YES, recognizes persistent and complicated Lyme disease
The US Department of Commerce’s NIST have prioritized the need to improve diagnostic technology for Lyme disease and recognizes it may be a complex and chronic condition.
Taken from the February 11, 2016 article New Experimental Test Detects Signs of Lyme Disease Near Time of Infection … The collaborators—from the National Institute of Standards and Technology (NIST), Institute for Bioscience and Biotechnology Research, and Johns Hopkins School of Medicine—recently reported the successful first trial of their new method. “The complexity of Lyme disease, combined with lack of biomarkers to measure infection, has slowed progress,” study collaborator John Aucott, head of the Johns Hopkins Lyme Disease Clinical Research Center … The current standard blood test for Lyme disease exposes the infection only after antibodies have accumulated to detectable levels, which can take up to 4 to 6 weeks.
From the February 13, 2016 article Precision Medicine, Global Reach: Health Solutions From the Big Data Revolution. “This symposium examines the ways that big, open … data and technology are transforming society, science, and medicine and giving new hope for solutions to complex health conditions. As Albert Einstein said, “We cannot solve our problems with the same thinking we used when we created them.” … Yesterday’s science fiction concepts may become today’s solutions, shining light on complex, chronic conditions from cancer to Lyme disease.”
(11) US Department of Labor (USDOL) YES, recognizes persistent and complicated Lyme disease – see No.12
(12) USDOL’s Occupational Safety and Health Administration (OSHA) YES, recognizes persistent and complicated Lyme disease
[from webpage]” With the Occupational Safety and Health Act of 1970, Congress created the Occupational Safety and Health Administration (OSHA) to assure safe and healthful working conditions for working men and women by setting and enforcing standards and by providing training, outreach, education and assistance. The OSH Act covers most private sector employers and their workers, in addition to some public sector employers and workers in the 50 states and certain territories and jurisdictions under federal authority. Those jurisdictions include the District of Columbia, Puerto Rico, the Virgin Islands, American Samoa, Guam, Northern Mariana Islands, Wake Island, Johnston Island, and the Outer Continental Shelf Lands as defined in the Outer Continental Shelf Lands Act.”
The Directorate of Technical Support issues Hazard Information Bulletins (HIBs) in accordance with OSHA instruction CPL 2.65 to provide relevant information regarding unrecognized or misunderstood health hazards … HIBs are initiated based on information provided by the field staff, studies, reports and concerns expressed by safety and health professionals, employers and the public. Bulletins are developed based on thorough evaluation of available facts in coordination with appropriate parties.
The USDOL’s Occupational Safety and Health Administration has issued a Hazard Information Bulletin for Lyme disease that details circumstances surrounding the vaccine LYMErix. “Communications with the Vaccine Adverse Events Reporting System (VAERS) Hotline during September 1999 indicated that some reports of adverse events relating to LYMErix have been made… Lyme disease vaccine does not protect all recipients against infection with B. burgdorferi … Consequently, vaccinated persons, as well as the unvaccinated, should continue to practice good prevention and personal protective measures to prevent tick bites, and they should seek medical attention for early diagnosis and treatment of suspected tickborne infections. The duration of protection with LYMErix is not known … LYMErix is not recommended for certain groups of people [including ] Pregnant Women, Persons with Immunodeficiency and Persons with Musculoskeletal Disease [such as] persons with diseases associated with joint swelling (including rheumatoid arthritis) or diffuse musculoskeletal pain … Safety and efficacy are unknown for persons with chronic joint or neurological illness related to Lyme disease and for persons with second-or third-degree atrioventricular block.”
In a memorandum for Regional Administrator from Director Ruth McCully, of OSHA’s Directorate of Science, Technology and Medicine, “Workers should be advised of the signs and symptoms of Lyme disease, as well as the primary and secondary preventive measures for decreasing the risk of Lyme disease transmission, acute illness, and chronic health effects. If recognized early, Lyme disease can be easily treated with antibiotic medication. However, if the disease goes unrecognized and untreated, chronic conditions may ensue, including varying degrees of permanent damage to the joints or the nervous system … If recognized early, Lyme disease can be easily treated with antibiotic medication.
… In fact, the majority of infected persons do not recall being bitten by a tick … It is very important that the infection be diagnosed and treated with appropriate antimicrobial medication as early as possible because untreated Lyme disease may result in symptoms that are severe, chronic, and disabling. These disorders include chronic inflammatory arthritis, chronic muscle pain, heart disease, and/or neurological (brain and peripheral nerves) disorders. In addition, Lyme disease in a later stage is more difficult to diagnose, and treatment may be more prolonged and costly.”
(13) US Department of State YES, recognizes persistent and complicated Lyme disease
[from webpage] The primary goal of the Secretary of State and the U.S. Department of State is to shape a freer, more secure, and more prosperous world through formulating and implementing the President’s foreign policy, while supporting and protecting American interests abroad. The Department is responsible for promoting peace and stability in areas of vital interest to America
December 9, 2015 Fact Sheet from the Office of the Spokesperson, Washington, DC, “Climate change is a global threat that requires a global solution. Yet, many of the countries that have contributed little to global emissions are impacted the most … Climate change enhances the spread of pests that cause life threatening diseases like dengue, malaria, and Lyme disease.”
(14) US Department of Transportation (USDOT) YES, recognizes persistent and complicated Lyme disease -see No.15
(15) USDOT’s Federal Aviation Administration (FAA) YES, recognizes persistent and complicated Lyme disease
The FAA is responsible for regulating civil aviation to promote safety; encouraging and developing civil aeronautics, including new aviation technology; developing and operating a system of air traffic control and navigation for both civil and military aircraft; and researching and developing the National Airspace System and civil aeronautics.
The FAA takes Lyme disease very seriously. There is a 158 page Occupational Safety and Health Order that was prepared in an effort to prevent injuries, illnesses, and death from work related causes and to minimize losses of material resources and interruptions due to accidental occurrences. According to this guide, “Employees who have definitely been bitten by a tick at work must file a FAA Mishap Report (Form 3900-6) with their supervisor and the Safety Office.”
Furthermore, the guide notes that “while medical sources acknowledge that it takes several hours for a tick to infect you with Lyme disease, this process may be facilitated by squeezing the tick’s fluids into the bite. If bitten by a tick, do not wait for the symptoms of Lyme disease to appear; consult your doctor immediately, as early warning signs are not always present.”
There are bulletins that inform FAA staff about potential dangers of Lyme. For example, the Federal Air Surgeon’s Medical Bulletin Vol. 50, No. 3 2012-3 contains an article Etiology of Transverse Myelitis. According to Jonathan F. Stinson, MD, MPH, “This case report evaluates an airline pilot with [Transverse Myelitis] this disorder and the requirements necessary to return the airman to flying … Transverse myelitis is a relatively rare neurological disorder caused by inflammation of the spinal cord, creating a demyelinating lesion, typically involving both sides of the cord, hence its transverse or bilateral nature … The resulting inflammation damages or destroys myelin, compromising conduction between the brain and muscles or sensory organs distal to the lesion.
Symptoms of transverse myelitis can evolve over several hours to as long as several weeks. It often begins as a sudden onset of lower back pain, muscle weakness, or abnormal sensations in the toes and feet. However, it can rapidly progress to more severe symptoms, including paralysis, urinary retention, and loss of bowel control. Diagnosis is made by clinical history, physical findings, and a spinal cord lesion seen on MRI. Some patients may recover from transverse myelitis with minor or no residual problems, while others suffer permanent impairments that affect their ability to work or even carry out activities of daily living.
It is estimated that about 1,400 new cases of transverse myelitis are diagnosed each year in the United States, and approximately 33,000 Americans have some type of disability resulting from the disorder … There appear to be no inherited, ethnic, or gender differences in incidence. One study estimated the incidence to be about 4.6 cases per million per year … Transverse myelitis can have many different etiologies. It is thought that about 45% are parainfectious or related to infections. Infectious agents suspected of causing transverse myelitis include … Lyme disease.”
Cardiac complications from Lyme disease grounded this pilot for more than ten months. The Federal Air Surgeon’s Medical Bulletin Vol. 48, No. 2 Lyme Carditis and Atrial Fibrillation Case Report, by Joseph T. LaVan, MD discusses the aeromedical concerns and the issuance requirements to regain an active pilot licence for a pilot with Lyme-related cardiac complications.
“Of aeromedical significance, [Lyme] patients can develop cardiovascular compromise (either from conduction disturbances due to carditis or cardiac tamponade due to pericarditis), neurological deficits, and debilitating arthritis. This airman developed transient complete heart block and pericarditis with effusion, both of which resolved with treatment, so he is at low risk for recurrence of these cardiac problems. Pericarditis may recur in up to 20% of patients after an acute attack, which may lead to cardiac tamponade and significant hemodynamic instability … This airman remains in atrial fibrillation, requiring periodic re-evaluation for special issuance. This ongoing surveillance is likely to detect any complications of the Lyme carditis … The airman applied for renewal of his third-class airman medical certificate 10 months after the onset of acute pericarditis and atrial fibrillation and six months after the second failed cardioversion attempt.”
Jenna Luché-Thayer, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes and Global RBCC
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**Comment**
I must add that although the Obama Administration might have acknowledged persistent Lyme (I never heard about it), it did absolutely nothing about it – nor any of these other agencies listed. Lyme/MSIDS is a huge problem – that transcends politics. It has been improperly handled from the get-go and the seemingly endless juggernaut has not let up one iota, no matter who is in the White House. I believe this is because our government is captured and is full of corruption at every single level. This is particularly true with public health, as has been so poignantly pointed out during the time of COVID. But, this is not new. This same corruption has been at play for decades but has only become more prominent for all whom are looking to see.
Madison Area Lyme Support Group 