In today’s podcast, Sarah is joined by Jim Wilson, founder and President of CanLyme — the Canadian Lyme Disease Foundation. After contracting Lyme disease 30 years ago in Nova Scotia, Canada, Jim dedicated his time and energy to improving the lives of Lyme patients and their families, helping to bring a balanced perspective of Lyme disease to the forefront.
Jim began to question the understanding of Lyme disease when his daughter and several others were diagnosed with Lyme disease in British Columbia, despite the perception that Lyme disease was only prevalent in the eastern United States. He notes that even now, patients are having to seek out answers to questions about Lyme disease diagnosis and treatment that remain unanswered within the current medical system.
Awareness, prevention and CanLyme tick kits
Since its inception, CanLyme has helped to educate both the public and physicians regarding Lyme disease and other tick-borne illnesses. CanLyme supports Lyme disease research and has raised the public profile of Lyme disease for the general public through media and within various levels of government. Jim notes that unfortunately, changes within the medical establishment are lagging behind what is needed to address the problem of tick-borne illnesses. He also notes that demand for Canlyme tick kits has steadily increased over the years due to the higher prevalence of ticks. For those working and playing in the outdoors, the kits have been used to quickly identify and remove ticks correctly, reducing the risk of transmission of Lyme bacteria.
Jim has found that the medical establishment in Canada continues to embrace a narrative about Lyme disease based on methodology which does not reflect the abundance of recent and relevant scientific evidence. He believes that over the years, government response to the disease has been inadequate, in part due to minimization of the scope and severity of Lyme disease by infectious disease authorities. He points out that AMMI, the Association of Medical Microbiology and Infectious Disease Canada, continues to deny the existence of Chronic Lyme disease despite an abundance of published peer-reviewed scientific evidence. Jim notes that although some provinces have a higher prevalence of Lyme disease and some are doing a better job of creating awareness, all provinces are still lagging behind in both diagnosis and treatment of the disease.
“The more I looked into it, what I found was that it was not the disease that was rare in Canada, it was the diagnosis that was rare (in Canada).”Jim Wilson
In the midst of confusion regarding Lyme disease, Sarah inquires about where and how people can better understand the disease. Jim points out that CanLyme and similar websites have a wealth of information, including links to an abundance of robust and current research on Lyme disease. This evidence-based approach includes research in fields such as microbiology and entomology. He also notes that physicians are advised to avoid sites such as CanLyme and encouraged to only use government or medical organization sites for information. Jim cautions that much of the information on government sites is limited by confirmation bias and failure to examine all of the research that is currently available. He expresses his concern about a lack of freedom of thought, noting that current publicly-funded research is allocated on the basis of a limited perspective of not only Lyme disease but also other issues.
Physician education and research
Jim refers healthcare providers to International Lyme and Associated Diseases (ILADS) to gain a more in-depth understanding of Lyme disease and other tick borne illnesses. The ILADS Lyme Fundamentals course provides an in-depth examination of the basic science, clinical experience and trial evidence pertaining to the diagnosis and treatment of patients infected with Lyme and other tick-borne diseases.
In contrast to the diversity of content available through ILADS, Jim notes that our medical curriculum has been limited by influence of what he sees as “old guard dogma.” He also points out that the concept of patient collaboration in research and policy-making is tokenistic, where patients are being consulted at a late stage in the process, and their input is essentially dismissed when policies are being made. He expresses his disappointment in the failure of many public health and health research agencies in Canada for their failure to give patients a meaningful voice in regards to Lyme disease policy. He recognizes that unless patients are consulted as partners at the beginning stages of research, those projects will continue to be based on outdated information.
“The medical leadership, specifically from the infectious disease community, has always told government that this is no big deal, that it’s nothing to be concerned about and that they have it all under control. That is so far from reality.”Jim Wilson
The Lyme disease “data gap”
Jim’s background is in law and medical malpractice and he gained experience identifying other deficits within the medical system. He was compelled to question the narrative about Lyme disease being rare and benign not only because of his own experience of the disease but also by following his curiosity when his daughter contracted it 10 years later, and 4500km away from his own exposure to the disease. This “data gap” is what inspired him to bridge this disparity by founding CanLyme.
Jim gives a shout out to the many Canadian researchers currently working collaboratively with patients and advocacy groups. He expresses his gratitude for those researchers and for the generous donors who are supporting research, prevention, awareness, education and other projects aimed at improving the lives of patients. Jim would love to see best practices followed for Lyme disease research and policy development, including: appropriate collaboration; and, early involvement with patient groups including development of terms of reference and research design (as per CIHR Canadian Institutes of Health Research own strategy for patient-oriented research).
“True collaboration and patient input is required to start right from the beginning, right from the terms of reference of what it is that you’re studying…You don’t bring the patient in after everything’s been done, the surveys have been written. That’s not collaboration, that’s just checking off a box.”Jim Wilson
Thank you Jim for working so tirelessly to increase awareness, education and research on tick-borne diseases and to help create a narrative that reflects current research and realities for Lyme patients across Canada!