One year later: How the landmark NASEM report on chronic Lyme is – and isn’t – changing minds

A year can seem long or short depending on your perspective. When you look back, its 12 months can seem like they flew by in a flash – or it can feel like an eternity when you’re living through each of its 365 days.

But how long is a year when it comes to changing priorities in Lyme disease research and reversing entrenched attitudes to the illness in the medical profession?

That’s what the U. S. National Academies of Science, Engineering and Medicine (NASEM) tried to do with its report on chronic Lyme. So, now that more than a year has passed since its release, how’s that effort going?

When the report, titled Charting a Path Toward New Treatments for Lyme Infection-Associated Chronic Illnesses, came out in May of 2025, health professionals, researchers, patients and advocacy groups hailed it as a potential game changer. After all, one of the most prestigious scientific institutions in the world was challenging long-held opinions that the symptoms were all in patients’ heads, or that they must have some other affliction, and it was calling on researchers to include patients in a renewed effort to find new treatments.

Read the full report

National Academies of Sciences, Engineering, and Medicine. 2025. Charting a Path Toward New Treatments for Lyme Infection-Associated Chronic Illnesses. Washington, DC: The National Academies Press. https://doi.org/10.17226/28578.

“A particularly important and poorly understood aspect of Lyme disease is its association with a variety of symptoms that persist post-infection and post-treatment,” the authors wrote.

“Unfortunately, there is limited understanding of the pathophysiology of such persistent symptoms …”

But just how much of a watershed has it been? How many institutional policies – and minds – has it helped to change so far, both in the U.S. and Canada? Are patients any closer to getting the accurate diagnoses and care they need from health-care providers who might have dismissed them before?

Why the NASEM report matters

We don’t know – and might never know – the exact number of Canadians living with chronic Lyme symptoms, but one estimate puts it as high as 96,278 as of 2025. What we do know is Lyme disease is already the most common vector-borne illness in Canada, and climate change is fueling a population explosion of the ticks that carry it, driving up case counts. Since around a quarter of patients can go on to develop persistent symptoms, that number is presumably rising as well. 

The NASEM report isn’t the first to assert that chronic Lyme isn’t just a figment of a patient’s imagination. There’s no shortage of clinical studies that show it’s real.¹

But the report – because of NASEM’s international prestige – turned a lot of heads with its call to officially recognize the lingering symptoms of Lyme disease as a real and debilitating affliction. Its other groundbreaking recommendations include:

• Urging researchers to shift their focus to finding treatments to relieve symptoms, not just to find the cause,
• Proposing a new, less politically divisive name: Lyme Infection-Associated Chronic Illness (IACI), instead of Long Lyme or chronic Lyme,
• Drawing parallels between Lyme IACI and other conditions with similar symptoms such as Long COVID and fibromyalgia,
• Calling on researchers to use the latest techniques, including artificial intelligence, 
• Including patients in the effort to understand and treat the condition. 

Canadian patients still meeting resistance 

However, the report doesn’t seem to have changed the attitudes of many Canadian primary care physicians – at least not yet, according to Dr. Aparna Taylor, who runs a clinic in southwest Calgary.

“So far, a year out, the narrative has not shifted noticeably yet,” says Taylor, a naturopathic doctor with two decades of experience treating patients with chronic Lyme. 

Taylor welcomes the report because it validates the experiences of her patients. She says people with chronic Lyme symptoms make up 80 per cent of her practice and many of them come to her because they can’t get the attention they need from mainstream physicians. 

She says a year after the NASEM report, new patients are still coming to her after running into problems with family doctors and specialists.

“They’re being told that they don’t have Lyme disease. They are being told (by their physicians) that they don’t know what it is for some of the cases, or they’re being given other diagnoses,” Taylor says. 

 “But despite getting a different diagnosis and being offered various treatments – they’re still not better … I have heard cases where patients report their doctor wants to help but they don’t know what to do, or their hands are tied, or they say, ‘I believe you, but I can’t chart it.’”

That, she says, is because Canadian insurance companies still adhere to Lyme disease guidelines set by the Infectious Disease Society of America (IDSA) which maintains a strict definition of the illness and advises against antibiotic treatment for patients with persistent, ongoing symptoms if no pathogen is detected.

Taylor says although the NASEM report was a big deal in much of the Lyme community, she’s seen little evidence that many mainstream family physicians and other health professionals have read it or even know about it. 

“Of the people that I collaborate with – some of them are physicians, some of them are pharmacists, I have my other colleagues in naturopathic medicine – no-one has really brought it up,” she says. 

Taylor understands all too well that Canadian health professionals are overworked as they juggle heavy case loads and busy practices.

But she stresses they need to get the information in the NASEM report, even if they only have time to read the executive summary, not all 252 pages.

“There really isn’t any excuse. I think clinicians can find ways to get information that can better help them serve their patients.”

What it means to Canadian researchers 

It’s important to remember when assessing its impact on the Canadian Lyme research community that the NASEM report is an “American document” aimed at U.S. institutions, so therefore it “has not changed Canadian federal research priorities or funding allocation at all,” says Dr. Melanie Wills, director of the G. Magnotta Lyme Disease Research Lab at the University of Guelph. 

But the report is important to the lab she heads “because it validates complex Lyme as a topic that requires urgent study, and thereby helps to justify our work,” Wills says. 

“It has not changed our research priorities as we were already focused on understanding disease mechanisms and diagnostic strategies, which we (and the report) view as critical to the eventual goal of improving therapeutics.”

While it might be understandable there’s been no official Canadian institutional response to the report, much of the federal government’s public health and research policy stance seems opposed to a number of NASEM’s recommendations, including its call for patient-centred research and the acceptance of the IACI concept. 

The Public Health Agency of Canada (PHAC), for example, seems in no hurry to modify the way it defines Lyme disease to include patients with chronic symptoms, or to solicit their participation in research. 

PHAC shelved a report in 2024 aimed at diagnosing and treating Canadian residents who “do not meet the case definition for probable or confirmed (Lyme disease) but who exhibit various symptoms” consistent with it or conditions like it.

PHAC’s stated reasons for not moving forward with the initiative seemed vague. But some critics say the agency rejected the Chevalier/Larose report because its authors advocated a method called “participatory action research” to solicit information directly from patients, and to have patients take part in designing the study. 

Lyme researchers should not only welcome input from patients suffering from chronic symptoms of the disease, but they should also be “integrated into the entire network,” says Dr.Janet Sperling, an entomologist and president of the Canadian Lyme Disease Foundation (CanLyme).

“Patient reps should be true members of the team,” Sperling says, “from coming up with ideas to prioritizing studies and devising ways to test the ideas.”

Meantime, another prominent researcher and advocate points to the other NASEM recommendation that has largely failed to get traction in Canada.

“Overall, I haven’t seen that the IACI concept has been taken up here,” says Dr. Vett Lloyd, a professor of biology at Mount Allison University in New Brunswick and a member of CanLyme’s board of directors. 

Sperling agrees with Lloyd, and hopes PHAC will reconsider its position on both the IACI hypothesis and participatory action research. 

“Perhaps PHAC does not yet have the current skillset and the underlying set of information it feels is necessary to move forward,” she says.

“When the 2024 Chevalier/Larose report was shelved, it was clear to CanLyme that there was no serious effort to engage with patient representatives who do not support the status quo.”

Sperling describes Canada’s clinical research sector as “strong” but says when it comes to chronic Lyme, it suffers from government obstruction, as well as not enough institutional co-ordination and money. She also agrees it’s slower to embrace new ideas, and is less inclined to listen to advocacy.

“The advocates were never allowed in. We were held at arm’s length as though we were ‘useful idiots’ … The real decisions were made behind closed doors,” she says. 

The fate of TickNet – the primary vehicle for the coordination of federally funded Lyme disease research – illustrates the issues Sperling and others raise about money and cooperation. It saw its funding from the Canadian Institutes of Health Research (CIHR) expire this year.

Also, PHAC and CIHR have contrasting positions on patient representation and participation in research. While PHAC has consistently opposed including them as stakeholders, CIHR has encouraged and promoted citizen engagement as part of its Strategy for Patient Oriented Research.

“The different components are not talking to each other,” Sperling says.

“Overcoming silos and changing hierarchies is required. Rather than being purely technical, the challenges are structural at this point.”

How it’s changing U. S. policy

Not long after the report’s release, the U.S. Centers for Disease Control (CDC) validated its recommendations, finally acknowledging that lingering Lyme symptoms are real and medically significant, and that there’s a role for patients in the effort to find new treatments. 

The CDC also embraced the recommendation to group Lyme IACI in a newly recognized category of “Infection-Associated Chronic Conditions and Illnesses”(IACCIs) that persist after infections caused by pathogens like the SARS COV-2 virus, the respiratory syncytial virus and others. 

The National Institutes of Health (NIH) – the U.S. agency that helps coordinate and fund clinical research – has also accepted the report’s recommendation to stop looking at chronic Lyme symptoms in isolation and instead investigate them under the IACI umbrella. Congress has increased the NIH’s minimum spending floor for Lyme disease research by $10 million U. S. to $110 million U.S. in 2026,

Some of the clinical studies funded by that new NIH money include trials of cranial nerve and vagus nerve stimulation at Columbia University as a way of relieving chronic Lyme symptoms such as brain fog. NIH funding is also going to a $20-million study at Tufts University on the causes of persistent Lyme symptoms. 

Advocacy groups for chronic Lyme patients have long pushed for funding increases and a shift towards research aimed at symptom relief. Groups like the Global Lyme Alliance have welcomed the shifts in NIH policy but worry that too much of the new funding will get spent on bureaucracy rather than clinical trials. 

Should you tell your doctor about the report?

So, if you believe you have chronic Lyme symptoms but are having trouble getting your primary care doctor to believe you, should you come to the examination room armed with a copy of the NASEM report?

Aparna Taylor, the naturopathic doctor from Calgary, says it depends on you and your physician.

“If it feels safe for them in their relationship with their clinician then I would absolutely encourage them to share (the NASEM report) and other information,” she says.

But she cautions that if patients don’t know their doctor well, are on long-term disability and can’t afford care that isn’t covered by their provincial health insurance, it might not be a good idea

“If they lose that relationship with their clinician, then they don’t have anything left,” Taylor says.

Questions you should ask your doctor 

Dr. Daniel Cameron, an American physician and epidemiologist who specializes in treating Lyme disease, says there are alternatives if you feel your doctor isn’t giving you the attention and treatment you need.

Cameron is the past president of the International Lyme and Associated Diseases Society (ILADS), a nonprofit medical group that advocates customized treatment plans based on a patient’s unique history and symptoms. Unlike IDSA, its guidelines allow for longer or repeated courses of antibiotics when symptoms persist or return.

He says Lyme patients should ask their physicians a list of questions:

• Are you familiar with both IDSA and ILADS guidelines?
• How do you evaluate persistent symptoms after Lyme disease treatment?
• Do you consider coinfections and individual patient factors?
• How do you weigh the risks and benefits of additional treatment?
• How will treatment responses be monitored?

“All too often, I treat patients who have suffered years with chronic illnesses – many initially misdiagnosed with conditions like fibromyalgia or chronic fatigue syndrome,” Cameron says on his website. 

“But when correctly diagnosed and treated for Lyme disease or co-infections, many of these patients have recovered and now live healthy, active lives.”

1. A list of research references is forthcoming.