Vision, passion and tireless work: A tribute to Jim Wilson, the founder of CanLyme

Jim Wilson spent almost half his life battling Lyme disease as a patient, a parent and an advocate. A year after his death last June at the age of 70, his massive contribution to the fight still resonates.

It was Wilson who founded the Canadian Lyme Disease Foundation (CanLyme) 22 years ago and established its culture of advocacy for the rights of patients. 

He was a “fearless Lyme warrior and a good friend,” says Dr. Janet Sperling, president of CanLyme.

“He had an amazing ability to absorb information and identify the weak points in any argument. He also had a wonderful way with words,” she says.  

Wilson, a legal investigator, “single-handedly created a vibrant, active organization that is the first point of contact for many Canadians suffering from Lyme disease — providing information, education, research funding, and patient advocacy across the country,” according to the announcement of his death on CanLyme’s website. 

“CanLyme exists solely because of the vision, passion and tireless work of Jim over the past 20 years.”

Wilson’s story will sound familiar to tens of thousands of people who’ve struggled with Lyme disease. But what was extraordinary was how he responded to the challenge.

He first realized he had a serious problem in 1991 while living in Dartmouth, Nova Scotia. Years later, he would describe himself as a “very healthy, athletic individual” who became “quite disabled” by the time that year was out.

“I lost my ability to talk properly, think straight, to read properly, to retain information,” Wilson said during a panel discussion on Lyme disease in 2023. 

“Most systems of my body were affected and nobody had any idea what it was, so it took me several years to get a diagnosis of Lyme disease,” he  continued.

“Once I got the diagnosis, it was a struggle getting an appropriate level of treatment figured out for my situation. Once I did, I recovered I would say 95 per cent my health.”

Battling long Lyme

But that lost five per cent was a significant blow. For the rest of his life, Wilson would have to deal with long Lyme — a condition that health professionals, public health officials and researchers are still debating. Some still deny it even exists. 

There was a wide array of symptoms but some struck at the core of his capabilities.

“Chronic Lyme takes away the ability to be verbally incisive,” Sperling says.

“He rather enjoyed keeping lawyers on their toes and was devastated when he lost his ability to keep a room full of lawyers nervous.”

A larger voice

Ten years after he first contracted Lyme disease, and then moved his family across the country to British Columbia, his teenage daughter also came down with the illness. Other kids in the area did as well. That’s what prompted him to start laying the groundwork for what would become CanLyme in 2003.

”There were several groups provincially but I thought we needed at that time, a way to connect nationally so we could become a larger voice,” Wilson said.

“I knew right from the get-go that we had to come at this from a point of science, or else we were just going to be looked at as a bunch of talking heads,” he added. 

Setting the stage to fight an epidemic

Wilson wasted no time getting to work, using a wide array of skills to advance the interests of Lyme disease sufferers across the country. Thanks to his experience investigating medical malpractice cases, he wasn’t inclined to be overly deferential to health-care professionals and was comfortable questioning and critiquing them. His work in that field also gave him the opportunity to collaborate with medical and science experts around the world. 

“I approached various academics within our institutions in Canada who had anything to do with Lyme disease. We started out of the gate with an impressive bunch and we progressed from there,” he said.

As a foster father to more than 100 kids, he had also learned to be a compassionate listener and an effective advocate.

“Desperate patients would phone at all hours and he was always kind and sympathetic,” Sperling recalls. 

“His advice allowed thousands of Canadians to receive a useful diagnosis and for those people whose suffering was long term, he gave hope for a brighter future.” 

The disease Wilson and his allies were up against was  — and is — rapidly expanding its footprint in Canada. Climate change was fuelling an explosion of cases as ticks carrying the bacteria that cause Lyme colonized southern regions of Ontario, Quebec, Manitoba, British Columbia and the Maritimes — thriving first in rural areas, then pushing into suburbs and cities. 

Convincing governments, health-care professionals and researchers that they needed a co-ordinated, national approach to tackling the burgeoning epidemic was a long and difficult slog. 

It would take Wilson and his allies five years of campaigning to persuade the Canadian government to make Lyme disease “notifiable” — meaning each province would have to report the number of cases they were seeing annually to federal authorities — starting in 2009. 

CanLyme and other allied organizations would lobby for another five years  before Parliament passed Bill C-442, the Federal Framework for Lyme Disease Act, a private members bill that laid the foundation for a national strategy to address the crisis. 

“The stage is set for the cooperation that will make the difference that will find the research funding and create multiple centres of excellence,” Wilson told a senate committee in December of 2014.

Canada still lagging behind

But even with Wilson’s hard work, dedication and determination, many obstacles to a united front against Lyme disease still stand. 

Evidence is mounting that there are at least 10 times the number of reported cases in Canada as a warming climate continues to supercharge the spread of ticks that carry the bacteria. And doctors still struggle to diagnose a disease with many symptoms that mimic other illnesses. 

Moreover, Canada continues to lag behind countries like the United States and Germany when it comes to testing and treatment protocols. And of course there’s still that widespread disagreement over whether long Lyme even exists. 

Wilson was particularly frustrated by the stubborn refusal among some experts and public health authorities to listen to the people who suffer from Lyme disease, the professionals who treat them and the organizations that represent them. He was a strong supporter of patient-centred research.

”Patients are a very diverse group including lawyers, doctors, microbiologists, geneticists, plumbers, truck drivers, and hair dressers,” he wrote in 2016 in response to an article by Melanie McPhail and Jacob Shelley that said “the influence of patient groups on scientific policy needs to be more clearly defined and curtailed.” 

Championing patients’ right to be heard

“How dare a self proclaimed group of alleged experts be given authority over the sick while excluding the sick and their experts?” Wilson asked.

“Our ‘Health Law Institutes’ have bound the hands of patients and physicians within our system for years. They are not ‘public’ health law, they are ‘industry’ health law driven and nothing else,” he continued.

“This is an area of public tax dollar funding via our universities that needs to be seriously reexamined.”

Wilson noted that the Canadian Institutes of Health Research clearly states that patient involvement at health policy design and planning stages yields the best outcomes. He emphasized that, “We [patients] are equal partners.”

Sperling says Wilson could be forceful when campaigning for the rights of Lyme patients but never indulged in personal attacks.

“I know some government people found him overly assertive but he was a very kind man who was able to focus on ideas not personal animosity,” she recalls.

“It was remarkable how kind and forgiving he could be after he suffered so much.”

‘A very big and helpful heart’

The organization Wilson founded has come a long way over the last couple of decades. In addition to successfully pushing to make Lyme disease cases notifiable and helping to forge federal legislation to establish a national framework to fight the growing epidemic, In addition to pushing for changes in government health policies, CanLyme is working on many fronts to educate the public while supporting patients, clinicians and researchers, including:

• Raising public awareness about the disease and how to avoid the ticks that spread it.
• Distributing tick removal kits.
• Making kits available to summer camps to protect kids from Lyme disease.
• Funding research to find better ways to prevent, diagnose and treat it. 
• Establishing an annual Lyme disease conference for health-care professionals, public-health officials and researchers.
• Pushing for a Canadian Lyme disease biobank. 

The fight is far from over but Wilson’s unwavering advocacy for Lyme disease patients serves as an example to those who are carrying on his legacy. 

Sperling recalls he was a supportive friend who knew exactly what to say to colleagues who needed encouragement when progress felt glacially slow.

“I remember feeling discouraged at one point and he said not to focus on the short term but to remember that changing policy is like manoeuvring a container ship — you start the turn miles offshore and then use tug boats as you get closer,” she says.

“He was a man with a very big and helpful heart.”