The complexities of IACCs: what do “long haul” diseases have in common?

ByDorothy Leland

I recently took part in a webinar on “long haul” illnesses, otherwise known as infection-associated chronic conditions. IACC is a label now used to cover illnesses like long COVID, persistent Lyme disease, ME/CFS, and more. This umbrella term doesn’t redefine these diseases but rather highlights their shared challenges and interests.

IACCs exhibit many common traits in terms of symptoms, diagnostic hurdles, and treatment barriers. The phrase is also meant to foster cross-condition research where appropriate.

For example, by understanding how the pathogenesis of one disease works, we may enhance our understanding of the possible mechanisms at play in other infection-associated conditions. (Learn more about the IACC Initiative here).

Understanding shared mechanisms

Cross-condition research is not meant to replace specific research for individual diseases but to balance it. Each condition requires independent research to fully understand its unique traits, but shared mechanisms across these conditions could accelerate progress for all. Cross-fertilization of ideas and collaboration between fields are essential to this acceleration.

These infection-associated conditions share many common traits–both in terms of symptoms and the difficulties with diagnosis and treatment. They arise from an infectious illness that hasn’t resolved. A major challenge is the lack of a reliable test or biomarker to diagnose patients.

Patients are frequently misdiagnosed or have their symptoms wrongly attributed to mental health issues, and many are treated dismissively when they seek professional care. Gaslighting is unfortunately common. These conditions are sometimes considered contested diseases, meaning that some doctors dispute their existence.

Thus, many patients seek treatment outside of typical healthcare settings, which may not be covered by medical insurance. Often patients are forced to either bear the medical costs themselves–paying out of pocket–or to forego care altogether. Patients have difficulty finding clinicians who will treat them and the pool of clinicians who treat these conditions is quite small. As a result, many must travel great distances for care, and treatment options are limited.

Common symptoms across IACCs

IACCs also share some common symptoms. These include:

– Fatigue

– Sleep disturbances

– Cognitive difficulties or “brain fog”

– Headaches

– Sensitivity to light, sound, and temperature

– Peripheral nerve issues, such as small fiber neuropathy

– Muscle and joint pain

– Dysautonomia (irregular blood pressure, heart rate, digestion, and temperature control)

– Vascular problems, like blood clotting

– Heart issues, such as blockages or heart attacks

– Post-exertional malaise (PEM), where symptoms worsen after physical or mental activity. PEM is a hallmark of ME/CFS but also affects long COVID and some Lyme disease patients.

The value of cross-condition research

One of the most promising developments in IACC research emerged from the 2023 National Academies workshop, funded by the Cohen Foundation and the CDC. This groundbreaking event united researchers from fields like long COVID, persistent Lyme disease, and ME/CFS, fostering insights and collaboration.

I was part of the planning committee and excited to include patient-centered researchers, alongside a panel featuring patient-led research from each condition. Lisa McCorkell from the Patient-Led Research Collaborative and I shared the panel with Oved Amitay from SolveME, and Liz Horn from the Lyme Biobank.

You can watch that panel by clicking below:

 

What was really remarkable was seeing how researchers from different fields began noticing similarities between the conditions and started forming new research ideas. They also started building the personal connections crucial for future collaboration.

One exciting project born from the workshop focuses on small fiber neuropathy— a loss of small nerve fibers in the feet and hands that is quite painful. It’s a condition that affects each of these diseases–long COVID, persistent Lyme disease, and ME/CFS. Funded by the Cohen Foundation, which has been a big supporter of Lyme disease research, this project exemplifies how cross-condition collaboration can spark important new research to benefit a wide variety of chronically ill patients.

I spoke with another researcher recently who was looking at brain changes in patients with persistent Lyme disease and long COVID. I believe events like the National Academies’ workshop are changing the way we think about and research these conditions.

Why do some people remain ill?

We still don’t understand why some people with acute infections remain ill while others fully recover. Possible explanations include persistent infection or an overactive immune response. While some health conditions have biomarkers—measurable indicators of biological states—there are no biomarkers for long COVID, persistent Lyme disease, or ME/CFS.

The NIH has a strongly held belief that until you understand the pathogenesis and a biomarker, you cannot treat a condition. A question posed to the IACC panel was whether patients and clinicians should wait for a biomarker to be discovered before starting treatment. My answer? A strong “no”!

For Lyme disease, we’ve waited 20 years for a biomarker, while many patients have been left untreated and abandoned by the medical system. What patients need is clinical innovation and they need this now.

In my case, I was misdiagnosed for five years. When I was finally diagnosed, I saw a clinician who was willing to try different approaches. Ultimately, this is what got me well. The option of “doing nothing” may appeal to policy makers, but patients have only one life to live. There may be risks associated with treatment, but for profoundly ill patients, the risk of doing nothing is unacceptable.

As Dr. Ezekiel Emanuel, at the University of Pennsylvania and advisor to presidents Obama and Biden puts it: “If you don’t have the pathobiology figured out, you try things. You don’t just slow, slow, slow, walk it.”

In conditions like ME/CFS, where the cause is unknown, addressing the cause isn’t an option. However, in Lyme disease and long COVID, known causes make treatment possible. We know a percentage of Lyme disease patients become well after treatment. Therefore, treating patients to wellness, not just symptom management, is crucial. (For a blog discussing our antibiotic treatment study, click here.)

No treatment for Dr. Fauci?

Anthony Fauci, MD, who for years served as the nation’s top infectious disease doctor, wrote in the New York Times about his recent hospitalization for West Nile virus. “There is no treatment for West Nile virus disease, and I was left to deal with its toll on my body,” he said.  “It was terrifying. I was afraid that I would never recover.”

So now he finally gets what Lyme patients have long understood—when people are sick, they want to get well. They want answers now.

We know that in their search for health, patients are experimenting with various treatments. Using patient registries like MyLymeData, we can capture information on what patients try and whether or not it works.  When some patients become well, we should ask what they did and use that data to advance science. Our initial results, published in a peer-reviewed research article, can be accessed here.

Click here to learn more about MyLymeData.

Lorraine Johnson, JD, MBA, is Chief Executive Officer of LymeDisease.org and Principal Investigator of MyLymeData. Follow her on X (formerly Twitter) @lymepolicywonk. 

Dorothy Leland is a longtime advocate and researcher focused on Lyme disease education, policy awareness, and patient support. She has contributed to numerous publications and works closely with medical professionals and organizations to improve understanding and treatment of tick-borne diseases.

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