Why is there so much resistance to acknowledging it and dealing with it the way any other epidemic is dealt with? Contrasting Lyme disease with Zika and West Nile viruses reveals bizarre discrepancies that are not easily explained:

Lyme West Nile Zika
Annual Number of Cases 300,000+ 2,000 935
Federal Research $24 mil $42 mil $622 mil-$1.9 bil
Investment Per Patient $80 USD $21,000 USD $665,240 – $2,032,085 USD

Enter Jenna Luche-Thayer, an intrepid researcher and compelling presenter who reveals the policies behind the reality. If you’re like me, “policy” may sound tedious and unreadable, but this is important information. Luche-Thayer’s investigations lend great insight into the devastating effects of current federal policies, and suggest some troubling ways by which they’ve come to be.

Luche-Thayer has served as an adviser to the United Nations and various other organizations as an expert in governance and compliance with a dedication to representing the interests of marginalized populations. Today, this includes people who live with Lyme disease.

Thayer’s assessments are “must reads” for any Lyme patient who like me has wondered why, as a group of people who suffer from a rapidly spreading and sometimes debilitating infectious disease, no authority seems to care. This phenomenon is remarkable to say the least.

Luche-Thayer publishes her findings on LinkedIn. Among the most recent:

CDC Sabotages State laws Protecting Lyme Patients – A growing number of states are now considering or have already passed laws to protect Lyme disease patients and the doctors who diagnose and treat them as a political patch to make up for federal guidelines that discourage respectful care and treatment of Lyme disease patients. Luche-Thayer breaks down how the U.S. Centers for Disease Control and Prevention is working against both patient interests and public health.

(If this sounds counterintuitive, it is; however, inexplicable abuses by this federal agency are not unprecedented. The famous Tuskegee experiments, in which the CDC precursor agency Public Health Service enlisted physicians to covertly agree not to treat black men diagnosed with syphilis for the sake of tracking progress of the disease, is accounted for on the CDC website in this way to this day: Under the heading “What Went Wrong?” this explanation is given: In July 1972, an Associated Press story about the Tuskegee Study caused a public outcry that led the Assistant Secretary for Health and Scientific Affairs to appoint an Ad Hoc Advisory Panel to review the study. In other words, according to the CDC, “what went wrong” with the study is that those conducting it were caught. Had the AP not exposed the study, the agency almost certainly would have continued its research at the expense of human lives. The agency has been further exposed for abuses in collecting HIPAA-protected health information from U.S. citizens through intimidation, and several years ago famously was taken to task after roughing up international relief workers who had been abroad in Africa to help Ebola victims.)

From Luche-Thayer:

Not only has the federal government done little to protect or serve Lyme patients, there is a federal agency that is actively sabotaging the State laws protecting Lyme patients. This federal agency is the CDC.  This may well the only case in US History where the federal government is actively undermining state laws that protect a specific group of suffering medical patients – many of whom are debilitated, disabled and financially ruined from illness. 

NIH Grants Used to Claim Lyme Patients are Looney – This article explains the subtle and pervasive way by which NIH-funded research uses specific diagnostic medical terminology to suggest to medical research-fluent readers (e.g., those who practice medicine, researchers, and governing bodies) that persistent/chronic Lyme disease is a mental illness or in some way psychogenic.

NIH has sponsored studies and articles that use the phrase ‘Medically Unexplained Symptoms’ when characterizing patients who suffer from persistent Lyme symptoms, chronic Lyme, post Lyme Disease Syndrome and Lyme with complicating coinfections. The phrase ‘Medically Unexplained Symptoms’ appears to be innocuous.  After all, it is widely recognized that late stage Lyme disease is a complex, systemic and life altering illness that is often further complicated by an array of coinfections.

In truth, the term Medically Unexplained Symptoms is considered a psychiatric disorder found under the Diagnostic and Statistical Manual of Mental Disorders (DSM) category of Somatic Symptom Disorder (SSD).

Is the CDC is willing to put its entire institutional credibility on the line for Lyme disease? – This may be the question of all questions. The pervasive denial about Lyme disease, promoted by the CDC, which presently solely addresses prevention (e.g., Don’t be bitten by a tick carrying a detectable strain of Borrelia burgdorferi.) and not improved diagnosis, understanding of the disease pathology, or treatment that is effective not only for acutely ill patients but also for those who have what the CDC acknowledges as “post-Lyme disease treatment syndrome,” is beyond comprehension. When the CDC itself tells us that over 300,000 new cases of Lyme are acquired by Americans every year, and now admits that many patients do not recover following treatment, the effect of learning about the organization’s denial is absolute cognitive dissonance. This effect naturally brings about theories relating to what might be behind this: Suggestions I have heard have ranged from intentional population decimation (unlikely from a purely economic standpoint), an exponentially larger-scale Tuskegee experiment (frightening to consider in light of the actual study’s nature, which related to Lyme “cousin” syphilis), the fragile egos of the select few who run the CDC (getting into more likely territory here), financial conflicts of interest among institutions (follow the money), and more.

Thayer:

…the CDC strategy to promote misinformation is very short sighted and already showing many signs of failure. The CDC Lyme Corps program will never be able to train the number of students needed to promote “public health messaging” that can counter the truth about Lyme disease. The CDC’s intention to use the media for such dissemination is almost absurd.  On any given day, a quick web search will show a multitude of media outlets sharing news about the devastations and complexities of Lyme.

Anyone interested in learning “the story behind the story” about Lyme disease should bookmark Jenna Luche-Thayer’s compelling posts on LinkedIn.

We can’t do much about the CDC’s self-governance, although the Lyme Action Network is encouraging improved congressional oversight and investigation into the agency’s patient-be-damned interests.

But Lyme patients can get our stories out and make sure that the news media in our areas hear us. So far, local news teams are leaps and bounds ahead of national news in this respect. Check out New York Fox 5’s recent Lyme disease special, and then share it with producers of your local news and encourage them to do something similar. This is an epidemic, and the number of states that are creating and passing legislation to overwrite federal guidelines that injure patients and their doctors is undeniable evidence that the Lyme epidemic is real, it is spreading, and the current approach to denying proper diagnosis and treatment has run its course. This has to change, but it will only change if we continue to insist on being heard.

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