by Jennifer Crystal
By any definition, 2020 has been a difficult year. When I considered writing my annual “Year in Review” post, I at first thought, can’t we just forget 2020 altogether? But from the Lyme perspective, there actually have been a lot of advances in 2020, and they’re worth celebrating. Below, I’ll outline some of the strides made in Lyme research, fundraising, and awareness in 2020.
While many scientists have been focused on COVID-19 this year, Lyme disease researchers have still been hard at work during the pandemic. Here are some highlights of what Global Lyme Alliance’s research partners have been up to:
- Brian Fallon, MD, MPH (Columbia University) and Michael Benros, MD, PhD (University of Copenhagen) conducted a study of all persons living in Denmark from 1994-2016 (~7 million people). They assessed the risk of mental disorders and suicidal behaviors among all individuals diagnosed with Lyme borreliosis (~17,000 patients). The authors unequivocally concluded that individuals diagnosed with Lyme borreliosis had increased risk of mental disorders, affective disorders, suicide attempts, and suicide. This study assessing the relationship between Lyme disease and psychiatric disorders (link: https://globallymealliance.org/the-quiet-desperation-of-chronic-and-mental-illness/) is the most statistically powerful ever conducted due the sheer number of patients evaluated. The results of this study are under review for publication by The American Journal of Psychiatry.
- Monica Embers, PhD (Tulane University) is studying the relationship between dementia and microbial infection with bacteria, viruses, and fungi. Her continuing studies that include patients diagnosed by Dr. Brian Fallon with neurological Lyme disease have definitely revealed the presence of Borrelia burgdorferi spirochetes by PCR and fluorescence microscopy in three Lyme disease patient autopsy samples. One patient was characterized by Lewy body dementia pathology and disease presentation. Although this latter patient did not meet a clinical definition of Alzheimer’s disease (AD), studies are underway to assess the diseased tissue of AD patient specimens for multiple microbes. These findings are incredibly important because they are the most carefully conducted studies, including hundreds of negative controls, to definitively prove that patient brains actually do contain spirochetes.
- Klemen Strle, PhD (New York State Department of Health) is studying host genetic factors in the development of Lyme Disease and Post Treatment Lyme Disease Syndrome (PTLDS). The objective of this project is to better understand how an individual’s genetic makeup impacts the clinical presentation of Lyme disease. Dr. Klemen has identified a new group of genetic signatures that are found at higher frequency in patients with Lyme disease and appear to be a risk factor for chronic, antibiotic-refractory Lyme arthritis. Dr. Strle is now studying neurological Lyme disease patients to see whether they also have a unique genetic signature that could serve as a marker for genetic tests, to identify those individuals predisposed to neurological complications even before such symptoms develop.
- Nicole Baumgarth, DVM, PhD (University of California-Davis) is studying long-term infections of Borrelia burgdorferi in mice. This work, as well as teaching and training of students, has continued remotely during quarantine.
- Lise Nigrovic, MD, MPH (Boston Children’s Hospital), directs the Pedi Lyme net, a GLA-funded network of emergency room pediatricians in seven states. The network collects biospecimens from suspected tick-borne disease patients. These specimens will be used to develop new diagnostics and to understand Lyme and other co-infecting pathogens in children.
For more on research and publications, check out these previous blogs:
Lyme disease Research Remains Active During Pandemic
Why Good Science Is Crucial
Despite a tough year for our economy, Global Lyme Alliance and its partners are still working hard to raise money for Lyme disease research, awareness, education, and treatment efforts. In October, GLA and Avril Lavigne hosted a virtual #FightLyme With Avril and Friends concert, in which stars like Wilmer Valderrama, Rob and Marisol Thomas, and Alessia Cara raised funds for and brought awareness to this disease that impacts over 400,000 people a year.
Other organizations such as Ride Out Lyme and the LivLyme Foundation are working as hard as ever on financial support for Lyme disease patients. For more information on fundraising and resources, please visit https://globallymealliance.org/financial-assistance/. To support GLA’s continued efforts during these challenging times, please visit us here at our 2020 Year-End Appeal.
In May, as the pandemic was raging, Lyme awareness month was still going on. This year Global Lyme Alliance ran a “One Bite is All it Takes” campaign. The goal of the campaign was to raise awareness about tick prevention, especially this year when people were spending even more time outside. Outreach efforts of this campaign reached over half a million people. The Bang the Drum Foundation matched up to $100,000 in this campaign that raised a total of $152, 680.
And while I’d never wish for a global pandemic-especially one that has taken the lives of so many people—to have to happen in order to bring awareness to Lyme and other illnesses, one silver lining of COVID-19 is that it has put complex illnesses on the map. Lyme patients often feel alone and misunderstood when their lives are on hold, but during the pandemic, the whole world has been paused for illness. People who are otherwise healthy have seen firsthand what life is like for the chronically infirmed, and this has created greater understanding and empathy. Words like “immunocompromised” and “long-hauler” have become part of the vernacular. The world’s eyes have opened to faulty diagnostic tests, restrictions, and the nagging question of, “when will this ever end?”.
As 2020 finally draws to a close, there is much to be grateful for in the Lyme world. I wish for a healthy 2021 for Lyme patients, their families, and the world.
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Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at email@example.com.
Please remember the only reason COVID-19 is classified as a ‘pandemic’ is due to the WHO changing the definition. It continues to have the same mortality rate as the seasonal flu. Also, it is now a well known fact that testing for COVID-19 is designed to give positives to create a ‘casedemic’ – which is being used to perpetuate continued fear so people will submit to lock-downs, mask wearing and taking an extremely dangerous vaccine, that thousands of medical professionals are warning the public against.
Now onto the latest Lyme/MSIDS research……
While not belittling the helpful work being done, I think it’s important to be honest.
In my experience, those making forward progress in tick-borne illness research are nearly always independently financed. They have zero ties to anyone who can pull strings for a pre-determined outcome. Lyme/MSIDS research is riddled with bias and false assumptions that have ruled research for decades. Most of the researchers have severe conflicts of interest. This is a fact. A fact that has played out for over 40 years and continues on. Any involvement with government and even university funding almost certainly dooms whatever Lyme/MSIDS research is being done.
Independent researchers barely get any recognition, and are often sanctioned, yet are changing the landscape with their work that defies the CDC/IDSA narrative.
Second, the Tick-borne Disease Working Group was a complete waste of tax-payer money. While not mentioned in this article, it is a widely publicized group working at the federal level – supposedly for Lyme patients. Patients watched with continued dismay at the shenanigans within this group. While patients continue to hold their breath hoping for a new outlook for the diagnosis and treatment of Lyme, the result of this group’s efforts is a more entrenched paradigm in the “New IDSA Lyme Guidelines”. This article explains it well.
The resulting continued denial of chronic/persistent Lyme/MSIDS affects every single aspect of research. The same mythology of the disease(s) and abysmal testing continue on unabated. We need to STOP supporting research efforts that do not help patients.
The quote: “Insanity is doing the same thing over and over and expecting different results,” comes to mind.
We desperately need post-mortem work to settle the chronic/persistent issue once and for all: https://madisonarealymesupportgroup.com/2018/04/13/chronic-lyme-post-mortem-study-needed-to-end-the-lyme-wars/
Without this crucial, foundational work research will continue to be built around a false paradigm that continues to belittle and marginalize very ill patients who have to pay out of pocket and travel vast distances to see doctors who treat this appropriately. Doctors who dare to treat this appropriately continue to be hunted down and crucified on the Lyme crucible.