WASHINGTON, DC – MAY 4: Plaque outside the United States Environmental Protection Agency (EPA) in downtown Washington, DC on May 4, 2015. (Shutterstock/Mark Van Scyoc)
Trump Should Eliminate Fake Science
DAVID LEWIS
Research Director, Focus For Health Foundation
5:08 PM 09/11/2017
“What Lies Upstream” is a documentary by Hyrax Films that includes interviews with Professor Marc Edwards at Virginia Tech and me about data fabrication by the EPA and CDC. A review by IndieWire highlights comments Director Cullen Hoback made in which he stressed “the alarming implications for the future of science and reason in America under Donald Trump.”
What Lies Upstream Trailer Approx. 2 MinTheatrical and VOD release January 2018. Get your DVD or Blu-ray before anyone else at whatliesupstream.com
When I fielded questions for Hoback at theaters across Virginia last week, audiences didn’t voice concerns over Trump, who was not President when the data fabrication occurred. They mainly just wanted to know how to protect themselves and what could be done to stop federal agencies from faking science.
Slamdance Spotlight – interviews director Collen Hoback Approx. 3 Min
The public is largely unaware that federal agencies often engage in fabricating scientific data to support their policies and cover up any evidence whenever they screw up. And it’s not limited to EPA and the CDC by any means.
Last year, for example, Deputy Inspector General Mary L. Kenda reported widespread scientific misconduct at a U.S. Geological Survey lab in Lakewood, Colorado. According to Kenda, data manipulation at the laboratory had “serious and far ranging” impacts on the agency’s scientific integrity, and potentially undermined the USGS as a trusted scientific organization.
Similarly, in 2008, Judge Anthony Alaimo of the Southern District of Georgia threw out EPA’s scientific opinions in a case involving agricultural practices recommended by EPA and the USDA. Experts hired by dairy farmers discovered that EPA, the USDA and the University of Georgia had published fake environmental data to cover up cattle deaths linked to EPA and USDA policies. In his decision, Alaimo devoted several pages to discussing EPA having terminated me for exposing its fake data, and ruled that the Agency’s testimony could not be trusted.
In my experience, faking scientific data at federal agencies has become more the rule than the exception. The rule is that any scientific data published by federal scientists must support their agencies’ policies and protect their agencies’ reputations above all else.
Federal agencies will also go to bat for scientists at universities who fudge data to support their policies. For example, Dr. Rufus Chaney, the USDA’s top scientist, defended the publication of fabricated data. According to Chaney’s testimony in the case before Judge Alaimo, faking data is permissible as long as the data are “in general agreement with general patterns established in hundreds of papers.”
The hundreds of papers Chaney referenced were studies EPA funded under a cooperative agreement with the wastewater industry to publish data supporting the safety and efficacy of an EPA regulation concerning land application of sewage sludge. Despite Judge Alaimo’s ruling, and congressional hearings into the data fabrication Professor Edwards and I uncovered at the EPA, CDC and USDA, the agencies and universities they funded refuse to withdraw their bogus research from the scientific literature.
What Lies Upstream ends with a clip of President Trump speaking and the narrator explaining how his EPA Administrator, Scott Pruitt, plans to dismantle the Agency. Unfortunately, fudging scientific data to support government policies has become ingrained in the federal bureaucracy. It would take a wrecking ball to fix it.
Reversing this culture of corruption will require changing the dimensions and course of the river of federal funds flowing into pools of academic scientistswilling to selectively publish data to support government policies and certain industry practices. So far, Donald Trump is the only President willing to take that first step. Under Pruitt, EPA’s Inspector General has already begun investigating EPA’s handling of the science at issue in the case involving the Georgia dairy farms.
In Charlottesville, someone attending the screening asked me whether the current budgets for scientific research at EPA and the NIH are adequate. I replied that more can be done with even less funding when the research is properly focused.
When I worked at EPA and served on the Graduate Faculty at the University of Georgia, I used my own personal funds to conduct studies on infection-control that I published in Lancet, Nature and Nature Medicine. The results my coauthors and I published revealed problems with decades of government-funded research. As a result, the CDC, FDA, EPA and public health organizations worldwide changed their policies.
Trump can eliminate federal funding of data fabrication. It just takes putting accomplished scientists in charge, who understand both science and the federal bureaucracy from top to bottom and will do whatever is necessary.
David L. Lewis, Ph.D., Research Director for the Focus for Health Foundation, is the author of Science for Sale: How the U.S. Government Uses Powerful Corporations and Leading Universities to Support government policies, Silence Top Scientists, Jeopardize our Health, and Protect Corporate Profits. https://www.westonaprice.org/science-for-sale-by-david-l-lewis-phd/
Dear Wisconsinites, would you please contact your US Representative and ask them to join the Lyme Caucus?
The Lyme Caucus is a bi-partisan group working together in Congress to take action on Lyme & tick-borne diseases. Under the leadership of Congressmen Chris Smith (NJ) and co-chair Colin Peterson (MN), it has initiated letters and actions to benefit Lyme patients, such as the inclusion of the monies for Lyme & tick-borne diseases into the Congressionally Directed Medical Research Program (CDMRP) and language and Lyme monies into Appropriations and to initiate favorable legislation. Additionally, it has queried government agencies over policies not favorable to patients. This has reminded the agencies that someone is looking over their shoulder. Many meetings have been held and educational sessions in DC for Congress.
If your US Representative or any US Representative who serves the state your group serves is not own the list below, contact him/her immediately and ask why not.
Remind them Wisconsin is 6th in the nation for LD and a hot spot for Anaplasmosis. The Lyme disease tick is now found in 50% of US counties and there were almost 400,000 new cases in 2015, 30% of which are children between 0-19. There are about 20 tick-borne diseases now in the U.S. being spread by at least 8 different ticks, not just the blacklegged/deer tick.
More about the Caucus:
The bipartisan Congressional Lyme Disease Task Force, co-chaired by Rep. Chris Smith (R-NJ) and Rep. Collin Peterson (D-MN), is dedicated to educating Members of Congress and staff about Lyme and other tick-borne diseases, as well as advancing initiatives that are designed to help the estimated 400,000 Americans who develop Lyme disease each year and all of those living with the disease.
As co-chairs of the bipartisan Task Force, Rep. Smith and Rep. Peterson lead annual appropriations requests in support of Lyme disease research through the Department of Health and Human Services and for research funding at the Department of Defense. In 2015, the caucus secured for the first time ever, $5 million in funding in the House Appropriations Committee annual military spending legislation, which was adopted in the Fiscal Year 2016 funding bill which was signed into law, and will provide resources for Lyme disease research through DOD’s innovative, high-risk, high-reward program.
Recently, the caucus secured another major win for Lyme disease. In December of 2016, the United States House of Representatives passed, and former-President Obama signed, the 21st Century Cures Act. The Cures Act included language – similar to a bill that Rep. Smith introduced previously – which created the Interagency Lyme and Tick-Borne Disease Working Group. Specifically, Working Group comprised of federal and non-federal members tasked with reporting to Congress on scientific advances, research questions, surveillance activities and emerging strains in species of pathogenic organisms.
Lyme Advocate, Bruce Fries and other advocates in the Washington, DC area, distributed awareness material to all members of the U.S. Senate and House of Representatives, including a copy of Dr. Richard Horowitz’s book, How Can I Get Better?: An Action Plan for Treating Resistant Lyme & Chronic Disease, along with personal letter from Dr. Horowitz, and information about the Congressional Lyme Disease Caucus.
Attached is a copy of Dr. Horowitz’s letter & Caucus info:
The reason I post information about vaccines to Lyme/MSIDS patients is you are confronted on nearly a daily basis to get the poke, and if you are like any normal person this confrontation will leave you feeling guilty if you don’t sprint to your local pharmacy for the latest “free” vaccine.
Please know that similarly to the Lyme controversy, there is a very real vaccine controversy with more and more medical practitioners speaking out about the very real concerns for safety, efficacy, and implications. This is true for everyone, but particularly for those who are chronically ill with a pathogen invasion of the worst kind. Please be informed and take the time to learn about the debate just as you learn about the debate on Lyme/MSIDS. LLMD’s believe autoimmunity plays an important role in Lyme/MSIDS. No one knows what part vaccinations play in a chronically ill person who already has autoimmunity.
Dr. Suzanne Humphries July, 2017,
Approx. 5:30 Min
The Real Reason Aluminum is in Vaccines
Injecting Aluminum Official Trailer Approx. 2:30
https://madisonarealymesupportgroup.com/2017/09/19/autism-aluminum-adjuvant-link-corroborated/ Dr. Christopher Shaw and colleagues have established convincing biological evidence linking aluminum adjuvant used in vaccines to autism. “This is the paper I have been waiting for. This paper reports measurements of cytokines in the brains of animals injected with aluminum adjuvant as neonates. The same cytokines are elevated as in human autism. IL-6 and CCL2/MCP-1 are elevated for example. Male animals are more strongly affected. It’s a perfect match to human autism.”
Flawed assumptions fuel autoimmune disease: The Sorry State of Vaccine Safety Science Infection, Vaccination and Autoimmune disease
Wraith et al.1 observe that there is a high probability that microbial antigens can induce cross-reactive immune responses against self-antigens. They explain that we have evolved fail-safe mechanisms that usually protect us from developing autoimmune disease following infections.
They write: “Here we analyse our understanding of how infections can lead to autoimmune disease and thus assess the relative risk of autoimmune disease arising as a consequence of vaccination.” and “These fail-safe mechanisms apply equally to the host response to vaccination. ”
Mojsilovic2 writes: “Moreover, one must not overlook the fact that vaccines only mimic natural infections, and infectious agents themselves can elicit the same immune phenomena. Indeed, the risk of developing immunemediated diseases by acquiring natural infection is even greater than the risk of the same diseases to develop by vaccine- associated reactions.”
Unfortunately, neither Wraith et al. nor Mojsilovic, provide any explanation, evidence or reference to literature supporting this fundamental assumption that fail-safe mechanisms operative during infections are active during host response to vaccination.
This fundamental assumption is easily demonstrated to be false. Live attenuated influenza vaccine (LAIV, Flumist) and live oral rotavirus vaccines come closest to natural infection and have routes of administration that match natural infection. So the immune pathways triggered may be similar. Even so, considering that the vaccines do not cause disease, one cannot guarantee that all immune pathways triggered by natural infection are also triggered by the vaccine. So the autoimmune fail-safe mechanisms cannot be assumed to have been operational.
Many vaccines administered today are subunit vaccines. They are administered through intramuscular or subcutaneous routes. Neither matches the route of natural infection. So they trigger different immune pathways. Subunit vaccines primarily contain one or more antigens from the target organism. These antigens are poorly immunogenic and the host response is weak. This weak immune response is part of the autoimmune fail-safe mechanism at work.
To make the vaccine work, adjuvants such as aluminum salts or toxoids are needed to boost the immune response. In other words, adjuvants, by definition, defeat the fail-safe mechanism.
Mojsilovic writes: “The main role of adjuvants is to trick the immune system in perceiving vaccine antigen as a serious threat, and thus initiate innate and consecutively adaptive response mechanisms, including long-term immune memory to that antigen.”
This artificial immune response was NOT engineered to mimic a natural infection. It was a serendipitous discovery (immunology’s dirty secret), tuned empirically3,4. The mechanisms of action involved in an adjuvant induced response is still not understood and is an active area of research. So there is no scientific basis to make the claim that the natural autoimmune fail-safe mechanisms are operational in the case of adjuvanted subunit vaccines either.
Fever is common during natural infections5 . Fever is rare with subunit vaccines6 . Even the rare vaccine induced fever is suppressed with the (controversial and changing) recommendation of using acetaminophen following vaccination, to overcome injection site pain. Acetaminophen may affect inflammatory pathways.7,8 Fever impacts immune system behavior including IL-6 and heat shock protein related pathways5 . Clearly, natural infection and vaccines DO NOT produce the same immunological effect. Therefore autoimmune fail-safe mechanisms operational during natural infection, CANNOT be assumed to be operational during a vaccine-induced host response. So, the Wraith et al. observation that there is a high probability that microbial antigens can induce crossreactive immune responses against self-antigens, needs serious consideration in the context of vaccines. And we see strong evidence of vaccines inducing numerous autoimmune diseases.9–17
In Biotechnology and Safety Assessment (2003)18, immunotoxicology expert Dr. François Verdier with vaccine maker Aventis Pasteur (now Sanofi Pasteur), writes: “Helicobacter pylori catalase was excluded from the screening of vaccine antigens because first it showed sequence homology with human catalase and second human catalase is reported to be an autoantigen in inflammatory bowel disease”
If Wraith et al. were right about “These fail-safe mechanisms apply equally to the host response to vaccination. “, an H. pylori catalase vaccine should have the same risk of causing autoimmune disease as the H. pylori infection. But as Dr. Verdier points out, the H. pylori catalase vaccine was considered unsafe and was excluded.
But unfortunately, numerous other vaccines contaminated with catalase, were inexplicably approved and are in widespread use.19 This can explain the epidemic of inflammatory bowel disease.
Tricking the immune system gets tricky
We understand very little about the immune system but we have decided to trick it. It is not a story you expect to end well.
Mojsilovic writes: “The main role of adjuvants is to trick the immune system in perceiving vaccine antigen as a serious threat, and thus initiate innate and consecutively adaptive response mechanisms, including long-term immune memory to that antigen.”
Vaccines are of course contaminated with non-target viral, bacterial antigens, numerous growth media proteins including casein, ovalbumin, yeast, bovine serum albumin etc.20 Example: the Pandemrix vaccine contained influenza hemaggluttinin proteins (target) and influenza nucleoproteins (contaminant).16
By tricking the immune system into perceiving ALL of the above proteins as a serious threat, adjuvants predictably produce numerous off-target immune responses such as food allergies21, asthma22 and disable the autoimmune fail-safe mechanism, producing autism11,23 and other autoimmune disorders19 .
The fact that adjuvanted vaccines work is proof that they create allergy and autoimmune diseases as well. This is a fundamental flaw in current vaccines.
Vaccine safety recommendations are ignored
Wraith et. al. call for autoimmune serology during vaccine trials. Vaccine trials have ignored that recommendation. No autoimmune serology is performed during vaccine trials.6,24–26 .
Serology is used only to check titers of antibodies against the target antigen. Checking for other antibodies such as IgE and IgG4 against self and contaminating antigens could easily identify vaccine-induced allergies, asthma, autism and autoimmunity.10,27–30
The fact that Pandemrix induced narcolepsy was only discovered after sickening numerous patients is proof that safety mechanisms required during vaccine design and testing, to avoid autoimmune diseases, are absent or dysfunctional.
Wraith et al. say autoimmune disease manifestation takes years. Yet vaccine trials last a few months. And post-marketing manifestation is easily dismissed with the statement: “Because these events were reported voluntarily from a population of uncertain size, it is not possible to reliably estimate their frequency or to establish a causal relationship to vaccine exposure.”31
Adjuvant and vaccine safety claims are premature
Vaccines and the adverse events they induce can be separated by decades.
In one mechanism, vaccine induced autoantibodies in women, attack the fetal brain and cause autism.11 With decades between vaccine induced autoantibodies and the adverse event affecting a different individual than the one vaccinated, there is no chance that vaccine surveillance mechanisms will ever find this type of adverse event or help in determining root cause.
This is the fundamental limitation of the “safety by testing” methodology. We need “safety by design”. Testing should be used to catch design errors. But current vaccines are empirically derived using trial and error. The result is fundamentally unsafe vaccines.
Mojsilovic: “Some of the first adjuvants discovered back then, on empirical basis of trial and error, are still in widespread use today, but only recently some light on the molecular mechanisms of their action has been shed.”
Immunological effects of current adjuvants were not designed. They are empirical, trial and error based. So no claim can be made that autoimmune fail-safe mechanism operative during natural infection are active during adjuvanted vaccine driven immune responses.
Diseases like cerebral infarction (CI), diabetes mellitus (DM), cardiovascular diseases (CVD) develop over the long-term due to inflammation32. There is evidence that they may have an autoimmune basis12,33. These diseases may been caused by aluminum adjuvanted vaccines decades ago. So the safety claims being made for aluminum adjuvants or vaccines are premature. The real cause and autoimmune basis of these adverse events is just surfacing now.
The autoimmune basis of many diseases are still being elucidated and researched.9,34–39. How can we rule out aluminum adjuvant and/or vaccines being the causative agent? It is therefore premature to make any claim about the safety of aluminum adjuvants or vaccines.
Tissue damage
Wraith et al. “Based on first principles, one could argue that a killed vaccine would be less likely than a liveattenuated vaccine to activate the innate immune response or cause tissue disruption.”
Not true. A live-attenuated influenza vaccine can at least be administered without tissue disruption. On the other hand, killed or subunit vaccine administration through intramuscular or subcutaneous routes involve tissue disruption. Vaccine antigens mimicking self antigens being present in the vicinity of tissue damage is therefore a very common occurrence with current vaccines. So the risk of autoimmune disease induction is greater with killed or subunit vaccines.
Further, killed or subunit vaccines are poorly immunogenic. As Mojsilovic points outs, “Adjuvants do that by triggering the same evolutionary conserved mechanisms that innate immunity utilizes to detect danger. By inducing innate immune reaction, adjuvants can concurrently provoke some undesirable immune response”. Even if the killed or subunit vaccines by themselves were less likely to activate the innate immune response or cause tissue disruption as Wraith et al. claim, the adjuvant used to fix the problem of poor immunogenicity, works by activating the innate immune response and causing tissue damage.40
Intramuscular or subcutaneous vaccine administration results in tissue damage due to the injection itself and further tissue damage caused by adjuvants. This results in Danger Associated Molecular Pattern (DAMP) receptor signals being asserted. Next, vaccine antigens trigger Pathogen Associated Molecular Pattern (PAMP) receptor signals. With natural infection, the signaling is reversed. The pathogen is detected before any tissue damage occurs. Any tissue damage due to infection and associated DAMP signaling follows. This is another difference between vaccines and natural infection. What effect does this have on the immune response and the autoimmune fail-safe mechanism?
Atopy and autoimmune disease
Wraith et al. state that atopy is unrelated to autoimmunity. Again they provide no references. This is an incorrect notion. We know that IgE antibodies are created to just about every type of protein that is injected.41,42 Once sensitized to IgE, we know that prolonged exposure to the antigen causes the synthesis of IgG4 to the same antigen.43–46 We know that one cause of autism is folate receptor alpha autoantibodies (FRAA)34,36. A majority of FRAA are of the IgG4 isotype.36 Many vaccines are contaminated with cow’s milk that contains the folate receptor protein. So we have an example of atopy, where induction of IgE to folate receptor proteins in milk contaminated vaccines is the first step in an autoimmune disease. Continuing exposure to dietary milk results in the induction of IgG4 autoantibodies causing this type of autism which is an autoimmune disease.47
So there are no clear delineations between atopy and autoimmune diseases.
Similarly, injection of yeast (Saccharomyces cerevisiae) contaminated vaccines can be expected to cause IgE mediated sensitization. Atopic dermatitis patients react to S. cerevisiae.48,49 Subsequent prolonged exposure to yeast will result in IgG4 induction.50 Many autoimmune diseases are associated with anti-saccharomyces cerevisiae autoantibodies (ASCA)51–53,9 .
Pertussis vaccine and autoimmune disease
The FDA made the flawed assumption that the acellular pertussis vaccine prevented transmission of disease, when they approved the vaccine. The acellular pertussis vaccine does not prevent transmission. The vaccine does not provide mucosal immunity.54 Vaccinated individuals are colonized by B. pertussis and spread the disease to infants too young to be vaccinated.55 This B. pertussis airway colonization has been linked to multiple sclerosis, an autoimmune disorder.54 To protect neonates against pertussis via passive immunity, the Advisory Committee on Immunization Practices (ACIP) has recommended the Tdap vaccine for every pregnant woman. However, this increases the risk of autoimmune responses against the fetus.11,47
Vaccines are assumed safe until proven otherwise
The Infanrix vaccine package insert says: “The role of the different components produced by B. pertussis in either the pathogenesis of, or the immunity to, pertussis is not well understood.”6
The Flumist flip-flop by the ACIP, is more evidence that vaccines are poorly understood. So it makes no sense to assume that vaccines are safe until proven otherwise. Instead, with vaccines being powerful immunomodulatory interventions, we MUST assume that vaccines are unsafe until proven otherwise. Here’s an example of the unintended consequences. The pertussis vaccine enables subclinical colonization by B. pertussis. The consequences of colonization include Alzheimer’s disease. 56
In the WHO methodology described by Wraith et al. Vaccines are assumed safe until proven otherwise. This does not make any sense. With widespread molecular mimicry between vaccine antigens, contaminants and self antigens, vaccines can impact numerous functions in the human body. Therefore, if any disease occurs after vaccine administration, vaccines MUST be assumed to be the cause unless one can prove otherwise.
The only way to ensure that all the immune pathways required for natural autoimmune fail-safe mechanisms are triggered is to make the vaccine produce the disease. Therefore any useful vaccine cannot be guaranteed to trigger the autoimmune fail-safe mechanisms. Therefore, all vaccines must be considered autoimmune disease causal agents unless proven otherwise. The WHO approach of assuming vaccines are safe until proven otherwise is wrong and unsupported by scientific evidence.
The bar for vaccine safety has been set too low.
The scientific process has failed
Peer review has failed to identify these problems that have continued to persist for decades with devastating consequences. In the case of the acellular pertussis vaccine, reality’s rude awakening in the form of pertussis infections, at least led to the FDA/CDC acknowledging the problem.
Theory vs. Practice
Mojsilovic on an advantage of adjuvants:
“… including the possibility to restrict the number of antigens present in a vaccine, and thus further reduce any risk of undesired (cross-reactive) immune responses to self tissues.”
Pandemrix was adjuvanted but the manufacturer failed to restrict the number of antigens thus triggering narcolepsy. So a theoretical advantage of adjuvants backfired in practice due to a sloppy vaccine design. Coupled with sloppy vaccine testing which was not designed to catch such problems, the consequences were devastating.
Regulatory failure
Mojsilovic: “By carefully monitoring the rare adverse events and scrupulously studying their mechanism of development, regulatory agencies, vaccine manufacturers, and researchers are participating in a joint endeavor to identify the specific factors that contribute to these events and to develop even safer vaccines.”
Mojsilovic: “there are carefully elaborated regulatory mechanisms to ensure that risks of such adverse reactions are kept at minimum.”
Unfortunately, Mojsilovic cites no references to support these claims.
How can one assume that adverse events are rare? It may be as common and widespread as obesity or atherosclerosis caused by vaccine-induced autoantibodies.12,16,57,33 If above claims by Mojsilovic are true, why did Pandemrix induce narcolepsy? Why no autoimmune serology in clinical trials, as suggested by Wraith et al.? Wraith et al.
“Criteria underpinning the assessment of adverse events of vaccines have been established by the WHO”
But WHO has no criteria for designing vaccines to avoid autoimmune diseases in the first place?
Vaccine risk vs. disease risk
Wraith et al. “However, the degree of vaccine-related risk should always be compared with that associated with the corresponding natural infection, either for the whole population or for a specific subgroup.”
The touted benefit of a vaccine is the avoidance of natural infection and its sequelae. So it is unacceptable for a vaccine to have the same risk of autoimmune disease as the natural infection. Depending on the disease, natural infection may be rare (say tetanus). But everyone is going to get a tetanus vaccine, multiple times. This increased exposure must be accounted in risk evaluation.
Wraith et al. “potential molecular and immunological mimicry between vaccine antigens and host components should be extensively analysed through a combination of bioinformatics and immunological studies.”
Never happens. Pandemrix induced narcolepsy could have been avoided if this homework was done.17 Where are studies establishing safety of these cases of mimicry?11–16
Accounting for antigen exposure dependent autoimmune disease
Autoimmunity caused by molecular mimicry to food antigens could result in severe illness due to ongoing exposure to food antigens. An example of this is cow’s milk contaminated vaccines inducing folate receptor autoantibodies that block folate receptors and cause autism spectrum disorders.34,47 A milk-free diet reduces autism symptoms.34,58 Similarly, vaccine induced autoimmunity caused by molecular mimicry to bacterial or viral antigens could be transient and only manifest itself upon re-exposure to that bacteria or virus. Studies that don’t account for such details will come to the wrong conclusion.
Conclusion
Whitaker et al.59 write: “the promise of adversomics is to understand the mechanisms behind vaccine adverse events in order to improve vaccine safety”
200 years after Dr. Jenner’s vaccines, understanding the mechanisms behind vaccine adverse events remains a novel concept? Proof that root cause analysis is an alien concept in vaccine research and industry.
Whitaker et al. write: “If vaccine adverse events are noted, then further studies will need to be conducted to determine whether the adverse event is related to the adjuvant, to the antigens in the vaccine, or to an adjuvantantigen combination.”
Applying that statement to aircraft, accentuates the absurdity:
“If air crash occurrences are noted, then further studies will need to be conducted to determine whether the crash is related to the engine, to the airframe of the aircraft, or to an engine-airframe combination.”
Explains why Pandemrix caused narcolepsy. If “further studies” can be performed, you don’t wait for people to get hurt but you should perform them before the product hurts people.
With little root cause analysis, little design for safety, the vaccine industry has been stuck tinkering with trial and error for over 200 years. The devastating consequences are predictable. This is no way to build a product that has such an enormous impact on people’s lives. It is doubtful if any other safety critical industry can get away with such a callous disregard for human safety.
References
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THE CHRONIC ILLNESS CONUNDRUM. WHEN PERSONAL ISSUES ENTER THE WORKPLACE.
One of the many factors that led to my 2007 relapse was a huge research project I was doing for the magazine I was working for at the time. The incredible amount of energy and brain power that I put into the project caused my neurological symptoms to flare, until I was physically and mentally overwhelmed. My doctor suggested I take a week or two off work while I restarted antibiotics.
“But my editor doesn’t know I have Lyme,” I replied sheepishly.
“Why not?” he asked.
“I didn’t want her to think I’m not capable of doing my job.”
My decision to be secretive was born of fear: I was afraid of being judged, afraid of being defined by my illness, afraid of being seen as unreliable, afraid of losing the job I needed to help pay my medical bills. The irony was that by not telling my boss the truth about my health—and my limitations—I had worked myself into a situation in which I was incapable of doing my job.
Angst over when or if to tell an employer about one’s illness is a common and scary struggle for patients of any chronic malady. It’s especially tricky with a relapsing disease like Lyme, which can flare, and impact work ability, without warning.
I was lucky because I worked from home. I set my own hours, so as long as I met my deadlines, it didn’t matter what time of day I did my work. I could write and edit articles from my couch, in my pajamas, and my boss was none the wiser. I napped in the afternoon and no one knew.
Not everyone has the same flexibility. Some Lyme patients find themselves struggling to look alive from nine to five, wishing they could curl up under their desks. They come home exhausted, unable to do anything but sleep.
The flexibility of my job, however, had its downsides. I was paid by the hour. It was easy to forego social plans in favor of doing another couple hours of research. I lost my sense of work-life balance. How could I give myself downtime if I could be doing work and making money? The more hours I put in, the more money I made; the more money I made, the smaller the medical bills became, but the larger the medical issues grew.
After restarting antibiotics, I had such a bad Herxheimer reaction that I became bedridden and incapacitated. I couldn’t perform the daily tasks of living, let alone the duties of my job. I had no choice but to tell my boss the truth.
As I hesitantly explained my situation to her over the phone, she stopped me and said, “Oh, I knew you had Lyme…I read that article you wrote about it.” After attending my college roommate’s wedding in Florida in 2006—just as I went into remission—I’d written a piece about that experience for our college alumni magazine. I’d forgotten that my editor had gone to the same college, and received the publication. “I remembered that piece and have been so amazed with how much work you’ve been able to do in spite of all you’ve been through,” she said.
She offered to have me slow down for a few weeks, and when even that was too much, she hired a temp to cover me for a month. She didn’t sound annoyed, or frustrated, or put out, or any of the negative reactions which I’d imagined. Instead she said, “You are a critical part of this operation. I want to work with you through this. Just tell me how I can best help you and respect your needs.”
Had I been upfront with my boss in the first place, I would have saved myself the stress and anguish that contributed to my relapse.
It goes without saying that not everyone has such an understanding boss. Not everyone is able to take time off without jeopardizing their career, and not everyone can remain financially afloat if they do take a leave of absence. Many Lyme patients are the chief breadwinners for their families. In addition to their paychecks, they desperately need the health insurance their job provides, even though the work itself can lead to a relapse of the illness that requires insurance coverage in the first place.
It’s quite a conundrum, with no set answer.
One thing that is true across the board, though, is that Lyme sufferers and other patients of chronic illness are not in these difficult positions by choice. When I expressed to my doctor my concerns about telling my boss about Lyme, he said, “Having Lyme isn’t anything to be ashamed of. It’s not like a secret addiction or something you did to yourself. You were bitten by a tick—it could have happened to anyone. I think, if anything, your boss should be impressed that you’ve been able to do so much while managing this illness.”
He was right! Lyme disease wasn’t my fault. It wasn’t anything to feel guilty or embarrassed about. A good boss will understand that.
Ultimately I had to quit my job at the magazine. Unable to care for myself or pay my bills, I moved back in with my parents at 28- years of age. I was very lucky to have their help, but the move was a blow to my independence and my pride.
I kept my doctor’s words in mind, though, as I wrestled myself back into remission. Once I was well enough to work again, I understood the process, slowly, first volunteering, then taking on small freelance projects. I also reevaluated my interests and capabilities. I knew I couldn’t work in a pressured editorial position again, and I knew I couldn’t keep a traditional schedule. So what could I do? What was I passionate about? What was a career that offered a more flexible schedule?
My readers know the answer: I channeled my medical experiences into writing and teaching, et voilà, here I am penning this post. Do I still have fears that I’ll relapse and not be able to keep my commitments? Of course. But I’m upfront with my colleagues. And, most importantly, I’m upfront with myself about my limitations, and that honesty has made me capable of more than I ever could have imagined.
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at jennifercrystalwriter@gmail.com
I stand in amazement at patients who are able to continue to slog through work while in treatment. For those of you who do, please take this article to heart. You are in-between a rock and a hard place for sure, no question.
I’m thankful that more workplaces are becoming more flexible allowing people to work from home or have flexible hours. Chronically ill people need this flexibility.
The other issue that begs to be pointed out is the importance of educating others about this disease(s) as chances are they too will experience it personally or with someone they know. By sharing your experiences, you will inadvertently be educating more people and since mainstream medicine still has its head in the sand, if we want others to be informed, we have to do it.
Two years ago, if you had asked me to tell you about myself, it would have gone something like this: I am 30 years old. I co-own an event design company. I have a husband who is a successful songwriter and the love of my life. I have a pug named Peter who I adore. I like traveling to new places, trying new restaurants and hanging out with my friends and family. I just finished a six-month cooking course for fun. I love my life.
Worst Two Years Of My Life
Now, let me tell you about myself today. I am 32 years old. I have an incredible husband, loving friends and family who have stood by my side through the worst two years of my life. I am not able to work.
It is a huge accomplishment if I make it out of my house at all in a day. Cooking, once my favorite hobby, seems daunting and I must constantly search for foods that do not cause an allergic reaction. Everyday tasks that once seemed easy, now take every ounce of my energy to complete.
Two years ago, my life took a devastating turn. I had been feeling “off” for a few months. I was losing weight quickly and felt like the issue was stemming from my stomach. So, I went to a GI specialist. After my blood panel came back normal, he said whatever it is will pass and recommended I resume normal activity.
Shortly after, I went on vacation with my husband and in-laws. Then, all hell broke loose. I felt painfully weak and fatigued and began to have panic attacks, which I had never had before. It felt like they were triggered by something in my stomach.
I Really Thought I Was Going To Die
By the end of the trip, I was too sick to fly. We rented a car and drove 19 hours home. I really thought I was going to die. I kept asking my body to stay strong enough to make it home so I could die in my bed.
By the time we arrived, I had an array of symptoms: severe aches and pains, a burning sensation all over my body, brain fog, shortness of breath, severe fatigue, and heart palpitations.
For the next year and a half, I was primarily house-bound, except for doctor visits. I went back to the GI specialist, who now said I had small intestinal bacterial overgrowth (SIBO). I could not tolerate the antibiotics he prescribed. I stopped them and went to an internist who said I had leaky gut and started me on that protocol.
With little improvement, I went to yet another GI specialist who could also not find anything wrong with my blood panel. He said my SIBO was not bad enough to cause the symptoms I was experiencing.
He then suggested it was all in my head. As did the next internist I saw. That’s the worst, isn’t it? Why would I make this up? I loved my life. This is the last thing I wanted to happen.
I was so weak and malnourished, I felt like I was dying. Why could no one help me? I felt like giving up. If not for my strong support system, I might have.
Many more doctor visits followed. Cardiologists, endocrinologists, energy healers, acupuncturists. You name it, I tried it. Still, no improvement and no answers.
Finally, A Breakthrough
I then stumbled upon an integrative GI doctor who changed everything. I went there not expecting him to tell me anything different then the last specialist, but he did. He said my symptoms sounded like Lyme disease, and that he was sure my test would reflect that.
I was not convinced. I had been tested for Lyme twice before and both tests had been negative. I did the testing again anyway and there it was—positive for Lyme.
A range of emotions came over me. Sad, angry that I hadn’t been tested properly before, skepticism, relieved that I finally had a diagnosis.
He referred me to a Lyme-literate doctor and that is when I slowly started getting better. The LLMD put me on immune-boosting supplements, Lyme-killing agents and weekly ozone IV treatments, which would knock me out for days on end.
Today
Six months later, I am better but not yet back to myself. I still have setbacks. I have brain fog, aches and pains, food and chemical sensitivities, anxiety and fatigue. I continue with weekly IV treatments and take more supplements than I can count.
I still have days consumed by tears because of how much my life has changed. I still face excruciating thoughts rolling through my head. Is this my new normal? It can’t be. I won’t let it be.
I do think the worst is behind me and my goal is that when I am strong enough, I will dedicate my time to helping those with Lyme and co-infections. We need to build awareness. It is misdiagnosed way too often. Lyme hides. Proper testing Is essential. We need to make treatment readily available and affordable for those in need.
Until then, stay strong my fellow Lymies. And know that you are not alone.
This story has a common theme: vague symptoms that doctors completely underestimate which grow unabated over time leaving a person a shell of who they were before.
In this day and age with all the information that has come out about ticks moving everywhere, of stories such as this one, of the CDC finally admitting there are 300,000 NEW cases of Lyme per year with the actual number being much higher, and finally telling doctors to treat empirically without waiting for test resultshttps://madisonarealymesupportgroup.com/2017/07/12/start-treatment-if-tbis-are-suspected/, you would think TBI’s (tick borne infections) would be nearly the FIRST thing that goes through a doctor’s mind particularly in an endemic area.
Yes, Lyme isn’t everything but LYME CAN BE ANYTHING.
This is another story and example of how unprepared most doctors are to diagnose and treat one of the most complex illness(es) known to man. The writer does not mention coinfections but the fact she is so ill would indicate to me by experience that there is involvement, making her case even more complex. Also, it is widely known in the Lyme world that borrelia has many strains – one discovered recently – and the symptomology can present differently.https://madisonarealymesupportgroup.com/2017/09/11/new-borrelia-strain-lanei-discovered-named-after-dr-lane/