A message from Invisible’s Chief Medical Officer

The groundbreaking study on Lyme and mental health from Columbia University shines a light on an utterly shocking statistic: People suffering from Lyme borreliosis have “a two-fold higher risk of dying by suicide than those without Lyme disease.”

As a clinician who has been treating Lyme patients for years, I see many reasons for this preventable loss of life. The biggest factor, in my opinion, is that these sufferers feel abandoned and stigmatized by the medical system and society at large. Lyme disease has no reliable test, no vaccine, and no effective treatments in the chronic stages of the disease. Yet physicians and family members often tell them that their very real disease is “all in their heads.” They feel invisible.

To respond to this urgent need, Invisible International is planning two important projects. The first is the Tick Bytes Clinical Data Research Platform, a nationwide clinical data repository that will provide quality tick-borne illness patient data to researchers to facilitate the development of better symptomologies, diagnostic approaches, and treatment protocols. We are currently working to fund 10 data-collection sites in hot spots across the country.

The second is a no cost mental health counseling and group support service for tick-borne illness patients. Led by psychiatrists and clinicians with expertise in Lyme disease, we will create a robust training and education platform for mental health providers. This platform will be tailored for different age groups and for caregivers of patients with tick-borne illness.

Please consider helping us fund these two trailblazing initiatives. Contact us via email or by visiting our giving webpage at https://invisible.international/give

Dr. Nevena Zubcevik

Invisible International, a 501(c)(3) nonprofit organization, is dedicated to reducing the suffering and social marginalization associated with invisible illnesses through innovation, education, and data-driven change projects. Invisible’s core team includes board-certified health-care providers in Infectious Disease, Internal Medicine, Family Medicine, Psychiatry, Pharmacy, Pathology, and Physical Medicine and Rehabilitation, many trained at or are affiliated with top-tier universities such as Harvard, Stanford, MIT, Brown, UC Berkeley, UC San Francisco, the US Air Force Academy, University of Virginia, and University of Pittsburgh.

Lyme advocates weigh-in on research priorities at HHS-LymeX workshop

Invisible’s Chief Medical Officer, Dr. Nevena Zubcevik, joins other Lyme patient advocates in setting priorities for the largest public-private research initiative launched since Lyme disease was discovered.

Last October, the Steven & Alexandra Cohen Foundation announced that they would donate $25 million to the LymeX Innovation Accelerator, a research prize competition to develop better tick-borne disease diagnostics. The competition recently entered its next phase, the collection of ideas from disease stakeholders — patient representatives, the government, academic medicine, and industry — to help define the prize guidelines.

To facilitate this process, the U.S. Department of Health and Human Services (HHS) hosted a LymeX Roundtable Webinar on April 28, 2021, which featured presentations and workshops with key stakeholders.

Dr. Nevena Zubcevik, Invisible’s Chief Medical Officer, was the workshop’s first lightning talk speaker, and in her presentation (starting at minute 37:43), she succinctly summarized why these prizes are so desperately needed: Only about 1 percent of the National Institutes of Health’s Lyme disease research budget (2015 thru 2019) went towards exploring better treatments for the nearly 500,000 Americans who get Lyme disease each year. Her emphatic message to the audience — We need more patient-focused solutions to bring relief to the millions suffering from tick-borne diseases today.

Invisible is working to remedy the treatment gap by launching the Tick Bytes Clinical Data Research Platform. This multi-institutional clinical data repository will provide quality de-identified tick-borne illness patient data to researchers. Researchers can then mine this data using advanced biostatistical methods to discover symptom profiles for mixed infections and treatment regimens that work. With this precision medicine approach, more quality evidence will reach physicians, insurers, and government. This, in turn, will improve diagnostics and treatment options, leading to better outcomes, insurance coverage, and government funding. Invisible is currently raising funds to launch 10 data collection sites at research institutions, community clinics, and hospitals across the nation. To learn more about how you can help, go to: https://invisible.international/give

The Cohen’s $25 million prize fund represents a whopping 50-percent boost to the 2021 NIH Lyme-related research budget, and, most importantly, it allocates more funds to urgently needed early diagnostic tools, since in the first three weeks after infection, the standard tests only detect Lyme disease 29 to 40 percent of the time.

For an overview of the devastating impact of poor testing and treatment options on Lyme patients, read the new LymeX publication, “The Health+ Lyme Disease Human-Centered Design.” To join the LymeX online community, go to: https://lymex.crowdicity.com/

Invisible International is a 501(c)(3) nonprofit foundation dedicated to reducing the suffering associated with invisible illnesses and social marginalization through innovation, education, and change projects. To donate or to learn more about our many programs to reduce the impact of tick-borne illness, visit the website: https://invisible.international