No, it’s not all in your head: How a new report could be a massive game changer for long Lyme sufferers

There could be new hope for the estimated tens of thousands of Canadians who’ve suffered for years from the debilitating symptoms of long Lyme, and have not only struggled to get an accurate diagnosis and effective treatment, but who’ve also felt ignored and dismissed by health professionals.

A report released by a group of top American experts says what’s usually referred to as “chronic Lyme” is not a figment of patients’ imaginations but a real affliction that needs the urgent attention of researchers and health-care professionals. 

The report, titled “Charting A Path Toward New Treatment For Lyme Infection-Associated Chronic Illnesses,” and released in early May, comes from a 15-member committee nominated by the National Academy of Sciences, Engineering and Medicine (NASEM) — a private, nonprofit umbrella group of three academies that advises the U.S. government on pressing scientific issues. Its chair, Dr. Kent Kester, says there’s an “urgent need to identify and develop safe and effective treatments,” and that chronic Lyme patients need to play a central role in that effort.

“It is a big deal to see NASEM do this report,” said Nicole Malachowski, a retired United States Air Force fighter pilot and the patient representative on the expert panel.

“As an American and a patient myself, the thing that I think is great about NASEM is they are congressionally chartered … to serve as the collective scientific voice of the United States of America,” Malachowski told Kim Cairns, the host of Looking At Lyme, the Canadian Lyme Disease Foundation’s podcast.

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.

Long COVID parallels with ‘Lyme IACI’

It’s difficult to arrive at an exact number  of Canadians living with chronic Lyme symptoms, but one estimate puts it at anywhere from 27,000 to 82,000 as of 2023.

While most people diagnosed with Lyme disease recover fully with a course of antibiotics, “approximately 10 per cent to 20 per cent go on to experience prolonged symptoms — which often include fatigue, pain, and cognitive impairment — sometimes for years, limiting function and quality of life,” the panel says.

The affliction is often called “long Lyme” or “chronic Lyme,” but the NASEM panel is pushing for what it considers a more scientifically accurate, less politically charged term: “Lyme Infection -Associated Chronic Illnesses.”(IACI). 

“Despite the chronic impact on the quality of life for many people, there are currently no validated interventions to treat Lyme IACI,” the report reads. 

“To date, only six randomized controlled trials have been published, the majority of which were conducted between 1999 and 2008,” it says. “Despite growing evidence of additional disease mechanisms and promising new intervention approaches for these infection-associated symptoms, research has been limited in recent years.”

The committee says studies on the novel coronavirus could shed some light on how Lyme disease becomes Lyme IACI.

“In the aftermath of the COVID-19 pandemic, we have seen the striking emergence of diverse symptoms and other findings considered under the umbrella of Long COVID in substantial numbers of patients after a SARS-CoV-2 infection. And while Long COVID may differ from Lyme IACI in many ways, there are a number of similar, overlapping symptoms suggesting commonalities of the underlying pathophysiologic processes in the host.” 

That apparent parallel between COVID-19 and Lyme disease, as well as with myalgic encephalomyelitis/chronic fatigue syndrome, is just one of many avenues the committee believes researchers should explore with the latest techniques powered by artificial intelligence and molecular medicine.

“One of the points that we wanted to make clear is that we do need to enter the modern age, use these newer tools, get the funders to get onboard to really foster that work,” said Kester, an internationally renowned specialist in internal medicine and infectious diseases.  

“We want patients to be better, we want their quality of life to be better, they want a treatment,” he told the Looking At Lyme podcast. 

A central role for patients 

“For years, people with chronic symptoms of whatever sort, presumably related to a Lyme infection, whether treated or untreated, have been sort of disregarded,” Kester continued.

Malachowski’s experience is a stark reminder of that. The former fighter pilot contracted Lyme disease back in 2012 and experienced  “a ton of nondescript, kind of flu-like symptoms” while stationed in North Carolina, but like so many long Lyme patients, she suffered with brain fog, fatigue and other debilitating afflictions for years with little or no progress toward a diagnosis.

“Like most people … I was recruited into this community by a tick bite,” she told the Looking At Lyme podcast. 

“I was told at the time that, ‘We don’t have Lyme disease in North Carolina’ … and so I’ve been living with Lyme Infection- Associated Chronic Illness for 13 years now,” Malachowski continued.

“From the time I presented to my military doctors with a rash to the time of my accurate diagnosis at Massachusetts General Hospital was actually 1,525 days, more than 25 doctors across eight specialties and three missed diagnoses.”

Malachowski hopes the report will help foster a crucial role for Lyme IACI patients in the development of health-care policy and their greater participation in clinical research — a patient-centred approach that’s been met with stubborn resistance in many countries, including Canada. 

“Let’s really start mining and utilizing these patient biobanks in a way that bridges the gap that still really does exist between the scientific community and our patient community,” she said.

But Malachowski also emphasizes that the report calls for an effort to find treatments that relieve patients’ worst symptoms — including the fatigue, the musculoskeletal pain, the brain fog — in parallel with the push to understand the underlying causes. For example, she says fatigue is her biggest challenge, limiting her to just three or four hours of peak activity a day.

“If we could discover a treatment that would give me just one or two more hours a day, honestly, I would be thrilled; I would be unstoppable,” she said.

“This is why we need to centre the patients…”

Moving research forward

To move Lyme IACI research forward, the report also recommends: 

• The U.S. Department of Health and Human Services should develop a consensus research definition to facilitate coordination in research and ensure the broad range of people living with the condition are considered.
• The National Institutes of Health and the Centers for Disease Control and Prevention should define a set of standard research tools and metrics — such as standard ways to measure the outcomes of Lyme IACI treatments.
• Funders and managers of biobanks and patient registries — which the report says are important but underutilized in research — should ensure that best practices are in place to further optimize the sustainability, accessibility, and quality of these samples and data to promote their utility.
• Research funders should develop and maintain a research data coordinating center to facilitate sharing of resources and knowledge across programs that are conducting Lyme IACI clinical research. Critically, this should incorporate input from people living with Lyme IACI.

‘A breath of fresh air’

The president of the Canadian Lyme Disease Foundation, Dr. Janet Sperling, welcomes the NASEM report. 

Sperling, whose son struggled to get a diagnosis after contracting Lyme disease, sees it as a call to put aside the disagreements and disputes that have hampered the effort to define Lyme IACI, especially in this country, and develop effective treatments.

It’s really important in Canada in particular … We’ve spent a long time with some of the doctors referring to chronic Lyme disease as a myth, or sometimes they say it’s junk science, or they say it’s pseudo-science,” Sperling told the Looking At Lyme podcast. 

“But this report is really a breath of fresh air because it is really driving home the fact that we do have the tools that we need to actually start solving the problems.”