From Patient to Patient Scientist: My Experience with the ImYoo IBD Study

Why I Participated in the ImYoo IBD Flare Study

I have had Crohn’s Disease for more than 25 years, along with other autoimmune and related disorders. I learned about the ImYoo study from the Autoimmune Association (a non-profit organization focused on autoimmune awareness, advocacy, education, and research). I decided to join ImYoo’s study on Inflammatory Bowel Disease (IBD) because I know we need a better understanding of the immune system and associated diseases. As a patient, nurse and former researcher, I think it is crucial that research finally address the need for targeted treatment for these diseases. We shouldn’t have to depend on the “let’s try this one (biologic or other medication) and see if it works” approach. 

Are You Thinking About Participating in an ImYoo Research Study?

You may be hesitant to participate in research. You might be worried about your privacy or confidentiality or your health and emotional well-being. It is normal to wonder about these concerns. I have conducted and participated in research and understand the worries that participants have but also know that researchers address these issues by carefully creating safeguards to prevent problems. 

What it was Like to Participate in the IBD Flare Study

Before

Before collecting my first sample, I was somewhat apprehensive and worried about a couple of issues. Despite having a backup sample collection device, my first thought was that I would make a mistake and ruin the device, or, that I would collect the sample incorrectly.  I really didn’t need to worry about this since I already had a back-up kit so that if I somehow did ruin the device or the sample, another collection kit was readily available!

My other worry was that collecting the sample would be painful. Because I have fibromyalgia, I was concerned about whether the sample collection would hurt since I experience a greater level of pain from any kind of stimulus than would normally be expected.

During

The sample collection process went smoothly.  I didn’t really find it painful; I was mostly aware of the pressure when pushing down on the device. While I have done finger sticks on myself before, this was very different, much less uncomfortable and actually fascinating!  I was amazed at how quickly the small tube filled with blood. Some tips:

• Being well-hydrated, as recommended in the instructions was important…the more hydrated you are, the quicker the blood flow!  

• As instructed, do move around before collecting your sample since movement improves blood flow. 

• Be sure to collect your sample in a room where the temperature is comfortable. I found the air conditioning in our kitchen to be too cold!

• Wear a garment that permits easy access to your upper arm. 

After

After completing the sample collection and packing the sample, I really felt like I had accomplished something worthwhile. First, I contributed to science and a better understanding of autoimmune disorders and the possibility that the knowledge gained from the study could ultimately help others with these diseases. Second, I knew that I would obtain some information about my own immune response that might be useful for future treatment.

Are you Thinking about Joining a Study but are Still Unsure?

One reason I joined the ImYoo study is because I am curious about my health and why my body responds the way it does. If you enroll in an ImYoo study, when it is over, you will get your results back. For the IBD study, I learned interesting and potentially useful information about my own immune system. The study was unique in that the researchers shared individual findings with people enrolled in the study. While many studies will not provide you with your individual findings and you likely will not benefit directly from knowledge gained from the study, it still feels good to contribute to the advancement of science. But again, ImYoo is different, you will receive information about YOUR immune function.

Autoimmune disease-related research is vital. Without it, we would know nothing about the human body’s response to illness and treatment. There would be no understanding of the effects, both positive and negative, of medication and other treatments on disease.

Actions Researchers Take to Address Participant’s Concerns

Your Personal Information

•  Participant identity and information are kept separate from study data and results, even when receiving your report, it’s all kept private and confidential with participant IDs.

•  Information is kept safe and secure-if on paper, it is kept in a locked cabinet in a locked room. If electronic, it is password and multi-factor verification protected.

Your Consent and Participation

Research studies are completely VOLUNTARY. Researchers are required to explain the study and its risks to you and ask for your written consent to participate. If you are unclear about ANYTHING, you can always ask questions, and you can always change your mind and not participate or even stop participating once you have begun the study.

Gratitude and Appreciation

As a research participant, I was grateful to the scientists conducting the research, because I knew they wanted to find answers to questions that would improve the health and wellbeing of people diagnosed with illness. As a researcher, I appreciated the people who participated in my studies because without them there would have been no studies!  

ImYoo is Unique and Forward Thinking

ImYoo researchers use AI, e.g., machine learning, to generate maps of immune cells and build models that help them understand immune cell function that may improve treatment of autoimmune disease. 

How was Data Collected for the IBD study?

The study required the collection of blood samples using a simple, easy method (with less discomfort than a finger stick!). The staff at ImYoo recognized participant concerns and were available to answer questions and provide support for sample collection.

Think about Enrolling in a Study - Become an ImYoo Patient Scientist!

Since ImYoo researchers recognize the value of patient participation and input, study participants are known as “Patient Scientists”. They not only participate in the study but provide the researchers with suggestions, ideas, and their views about the study and what it was like to participate. This information is essential for future studies of autoimmune diseases.

ImYoo is planning a new study and is looking for “Patient Scientists” who have been diagnosed with LUPUS. If you have never been a research participant, or a “Patient Scientist” and are thinking about it, I hope you will check them out at imyoo.health.

ImYoo Launches Patient-enabled Lupus Study to Track Steroid Tapering Outside the Clinic

by Emily Harari

Understanding Lupus & the Patient Experience

“I’ve had my death rights read to me six times,” recalls lupus patient advocate Christine Von Raesfeld. She describes a years-long odyssey to reach her diagnosis of systemic lupus erythematosus (SLE), followed by 15 telehealth visits before an underlying heart condition was finally discovered—one that had gone undetected because doctors attributed everything to her lupus.

SLE is a systemic autoimmune disease in which the immune system confuses the body’s own tissues for foreign threats. From the kidneys to the heart to the brain, nearly any organ can be affected. As a result, lupus can look vastly different from one person to the next, earning its reputation as a “heterogeneous” disease—and making it especially difficult to diagnose.

ImYoo sat down with people living with SLE and asked how long it took them to reach a diagnosis. Several described five or more years of worsening symptoms before finally being diagnosed. In hindsight, many recalled early signs such as joint pain, rashes, blood pressure issues, headaches, or flu-like symptoms—symptoms that were often intermittent, non-specific, or not severe enough to prompt blood testing. Even when labs were drawn, some were told they had “almost lupus.” Without meeting formal diagnostic thresholds, patients were sent home without answers, while their immune systems continued to quietly damage their bodies. For many, diagnosis only came once they were hospitalized with full-blown flares or progressed to organ failure.

In addition to SLE, there are several other forms of lupus categorized by cause or primary organ involvement, but SLE commands the bulk of clinical attention due to its prevalence and complexity. An estimated 1.5 million Americans live with SLE. About 90% are women, with incidence rates two to three times higher among Asian, Hispanic, and African American populations [1].

ImYoo interviewed the wife of a lupus patient. “Lupus is not as common in men,” she explained, “so [the doctor] ignored the chances of [my husband having] lupus.”She recounted the events that led to her husband’s lupus diagnosis: “He collapsed at home and had a terrible flare. He ended up in the [emergency room].”

Treating Lupus: The Consequences of Steroids

For some lupus patients, the hospital visits don’t stop after diagnosis. Some of the lupus patients ImYoo interviewed reported 10 to 13 hospital visits in a single year following diagnosis. In part, this reflects the limitations of current tools for monitoring lupus activity.

Disease activity monitoring remains difficult. For many patients, lab values hover at the edges of “normal” ranges. “When you’re at the edge,” one lupus patient explains, “doctors don’t see that.” Common blood tests include ANA, CBC with differential, CRP, sedimentation rate, anti-dsDNA, and metabolic panels— but these markers often fail to reflect how patients actually feel.

A major concern for physicians ordering these labs is catching early signs of lupus nephritis (LN), a form of kidney inflammation that affects roughly half of lupus patients [2]. LN can silently damage the kidneys until patients suddenly find themselves in life-threatening organ failure. The progression from asymptomatic to critical can be strikingly rapid—sometimes unfolding over weeks, days, or even hours. For lupus patients, their health can change on a dime.

Given this unpredictability, and the lack of reliable risk-prediction tools, physicians often turn to steroids for rapid damage control. Within hours to days, steroids can suppress immune overactivation and abort a flare. For a disease that can spiral out of control so quickly, this fast action can be life-saving. But steroids come at a steep cost.

Side effects can appear just as quickly as the relief they bring patients. Within days, patients may notice rapid weight gain, painful fluid retention, and destabilizing mood changes. Immune suppression also increases their vulnerability to infections and cancer, while long-term use raises their risk of osteoporosis and subsequent bone fractures [3]. In theory, steroids are intended to be short-term solutions. In practice, they often are not: 75% of surveyed lupus patients report taking steroids for over a year, and 27% for more than a decade. An overwhelming 96% expressed concern about their long-term use, so what keeps these patients on these drugs? [4]

One reason is that steroids often cannot be stopped abruptly without risking further harm. Instead, they are carefully tapered— a process that introduces its own challenges.

Lupus Challenge 1: Poor Long-Term Treatment Options

Steroids are often used to control symptoms while clinicians adjust longer-term therapies, such as biologics. However, biologics can carry significant toxicity and are not always well-tolerated by patients. Moreover, patients may struggle to get insurance coverage for their biologics. In inflammatory bowel disease (IBD), another autoimmune condition, patients whose insurance denied biologics were more likely to receive steroids and require hospitalization [5]. Unable to stabilize disease activity with biologics, clinicians may keep patients on steroids longer than intended.

Lupus Challenge 2: Subjective Definitions of Lupus “Flares” Undermine Care

How lupus flares are defined presents another obstacle. Rheumatologist Dr. Eric Morand of Monash University distinguishes between patient-reported “symptom flares” and “doctor-measured flares.” In 2024, Morand published a review of research, highlighting that flare assessments remain “susceptible to variation in clinician responses, rather than being a simple objective change in disease activity.” As a result, commonly used blood tests and questionnaires often leave treatment decisions dependent on clinical judgment rather than objective disease signals [6].

In fact, doctors consistently report fewer flares than patients do. While patients often describe debilitating fatigue and musculoskeletal pain, these symptoms may not meet clinical criteria for a flare. One ImYoo participant described symptom flares as feeling “like wet cement poured over my body.” Others spoke of “unbearable” joint pain. For clinicians, these constitutional symptoms can be difficult to distinguish from infections or co-morbid conditions, each requiring distinct treatment approaches. Meanwhile, patients are desperately seeking urgent relief.

As a result, some patients self-administer steroids against medical advice. Several lupus patients ImYoo asked had reported saving leftover steroids “for a rainy day,” anticipating that their symptoms might be dismissed. Morand and his colleague, Dr. Sarah A. Jones, warned that these mismatches between patient- and physician-reported flares “create the potential for a divide between patients and clinicians, eroding trust, medication adherence, and clinical outcomes” [6].

Emerging data, however, present a promising opportunity to reconcile this gap between patient-reported “symptom flares” and “doctor-measured flares.” In a recent clinical trial of the biologic dapirolizumab, patients reported significant reductions in fatigue and pain— symptoms not previously thought to be biologically driven [7]. “We were never sure whether these symptoms were immunologically determined,” Morand reflects. “Now, the data are making us rethink.” The findings point to immune pathways yet to be uncovered— pathways that may better define what a lupus flare truly is. More accurate methods to define lupus flares can reduce subjectivity in clinical care, increase communication between clinicians and their patients, and lead to better quality research data.

Lupus Challenge 3: Distinguishing Withdrawal from Relapse in Steroid Tapers

Steroid tapering introduces another layer of uncertainty. When symptoms emerge during a taper, are they due to lupus activity or steroid withdrawal? Patients ImYoo interviewed reported that withdrawal symptoms often follow predictable patterns, whereas their lupus flares are more sporadic. Without objective criteria, clinicians may mistake withdrawal for relapse and extend steroid use unnecessarily.

Tapering timelines vary widely. Some patients can taper over weeks, while others require years. The ImYoo team asked Dr. Morand how he thinks about steroid tapers for his patients. Steroid tapering “definitely increases the frequency of flares [both ‘symptom flares’ and ‘doctor measured flares’],” he shared, “which is why so many patients are ‘stuck’ on prednisone.” Morand added, “Biologicals [or biologics] aim to make successful tapers without a flare more likely, and they do, but not completely.”

ImYoo’s Investigation of Steroid Tapering in Lupus

ImYoo applies its multiomic, decentralized research platform to collect actionable molecular data during autoimmune flares. A multiomic approach integrates measurements across multiple biological systems, allowing researchers to observe how different layers of biology interact. These systems are often described using the suffix “-ome,” such as the genome (DNA) or microbiome (gut bacteria), while “-omics” refers to the measurement of those systems.

ImYoo focuses on immune cells, measuring both the transcriptome (RNA) and the proteome (proteins). Proteins reflect the downstream outputs of cellular activity, while RNA captures upstream signals that encode those proteins. Traditional blood tests typically measure protein levels alone. By pairing protein readouts with their upstream RNA signals, ImYoo can place standard biomarkers in a broader biological context and identify immune changes that may otherwise be obscured. Layering these molecular levels, from cellular signaling to functional outputs, provides a more comprehensive view of immune activity during flares.

Beyond molecular detail, ImYoo’s platform also captures situational context at the level of the patient. By enabling participants to collect blood samples at home, the study decentralizes research beyond clinic-based settings. This approach expands access for geographically distant participants and reduces barriers for patients who may be unable to travel during periods of severe symptoms. Autoimmune flares can be unpredictable, spontaneous, and transient. By the time patients reach the clinic, peak immune activity may have already passed. Because flare monitoring depends on timely sampling, clinic-based models can miss the most biologically informative moments.

ImYoo addresses this gap by allowing patients to collect blood samples at the onset of symptoms, capturing immune signals in real time. In previous decentralized studies of inflammatory bowel disease (IBD) and Rheumatoid Arthritis (RA), ImYoo identified patient-specific biomarkers using single-cell RNA sequencing (scRNA-seq) on mailed-in blood samples. Working both internally and with collaborators, ImYoo is now exploring how these molecular insights can inform treatment decisions in IBD.

ImYoo’s expansion to lupus builds on this foundation, with the goal of developing an at-home test to monitor immune changes during steroid tapering. Guided by patient and physician input, the study is designed to identify immune signals that distinguish patient-reported “symptom flares” from clinically measured disease activity— what Dr. Morand had termed “doctor-measured flares.”

The ImYoo Lupus Study is recruiting approximately 200 people with lupus for a 6 month duration. Participants will collect about 6–9 at-home blood samples: up to 6 scheduled monthly samples when feeling stable, plus additional samples collected after steroid reductions and/or worsening symptoms. Participants receive multiple kits upfront so they can collect samples immediately, without rushing to a clinic. Sample collections are self-administered on the upper arm, with a painless and rapid blood collection device that barely penetrates the skin. Remote check-ins capture medication use and symptom ratings such as joint pain and fatigue.

Enrollment is now open! Eligible participants include people with diagnosed systemic lupus erythematosus (SLE) and/or lupus nephritis (LN). Participants must be taking prescribed steroids in accordance with their physician’s instructions at the time of the study start. To join the study, participants must be tapering steroids or planning to taper steroids within approximately 6 months from the study start date. ImYoo patient scientists are eligible to receive monetary compensation, plus a personal immune report. To learn more about the lupus study and join the waitlist, visit ImYoo's Lupus study info page.

Impact for the Lupus Community

ImYoo is working to identify the immunological signals that can help clinicians recognize lupus flares in ways that more accurately reflect patients’ lived experiences—closing the communication gap between patients and physicians and paving a safer path to steroid tapering. This study is generating the data needed to build better tools for flare prediction, treatment guidance, and safer steroid tapering. By placing sample collection in patients’ hands, ImYoo is making transcriptomic technology accessible—and ensuring that patients historically excluded from research are represented.

“With lupus, zip code determines your care,” says Christine Von Raesfeld, recalling the telehealth visits that preceded her hospitalization. Limited diagnostic tools make that reality painfully clear—too often, patients receive appropriate care only once their disease becomes life-threatening. ImYoo aims to change that.

“We want precision medicine to reach patients before patients reach the emergency room,” says Tatyana Dobreva, co-founder and CEO of ImYoo. “Given the severity of lupus nephritis and its prevalence in SLE, we’re hopeful this work will not only improve routine care for lupus patients, but also contribute to the kind of testing that truly saves lives.”

Acknowledgements

Thank you to Christine Von Raesfeld for sharing your lupus story moderating ImYoo’s roundtable session with other lupus autoimmune warriors. Thank you to the lupus autoimmune warriors for sharing your stories and vital intuition. Thank you to Dr. Eric Morand for contributing to the study design of ImYoo’s Lupus Steroid Tapering study.

Beyond Averages: ImYoo's N of 1 Study Redefines Medical Research in Chronic Fatigue Syndrome

On March 28, 2024, ImYoo was featured in a ScienceNews article, “How patient-led research could speed up medical innovation.” The biotech startup was showcased for its collaboration with RemissionBiome, a patient-led research project investigating antibiotics as a way to achieve remission for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). RemissionBiome partnered with ImYoo, which provided their single-cell RNA sequencing (scRNA-seq) discovery platform for an N of 1 study and is now releasing its novel findings.*

*For this N of 1 study, medical and scientific disclaimers are provided at the bottom of this article.

ME/CFS is currently incurable and, by many accounts, “a disease doctors can’t diagnose,” due to its wide-ranging symptoms. In the US, it’s estimated to cost 18 to 24 billion dollars per year in lost productivity and medical costs, and it’s on the rise. For the past year, the National Institutes of Health (NIH) has been designing an ME/CFS research roadmap, which features specialists across eight different medical domains. Doctors, policy makers, and researchers have all been struggling to identify the cause of ME/CFS.

Yet, in this messy disease, ImYoo has spotted a promising signal in one individual. The preliminary results set off a Twitter storm within patient circles, and this model of community-based trials has pharma equally excited.

ImYoo gives patients the tools to painlessly collect their own blood from home. From their patient-centric discovery platform, ImYoo has amassed the largest longitudinal single-cell database from self-collected capillary blood. This fuels their machine learning (ML) models, which enables them to decipher relative changes in gene expression in every immune cell they capture. “It’s like generating a molecular snapshot of your immune system,” says Dr. Tatyana Dobreva, CEO and co-founder of ImYoo. “The more snapshots we capture, the more confident we are in the bigger picture. For this study, we captured 9 snapshots. And from those 9 snapshots, we generated a picture of a dynamic ME/CFS immune system for Tess [Falor], findings that we are eager to share with the community,” she added.

ImYoo x RemissionBiome Collaboration

The RemissionBiome study recruited 50 participants, one of whom is its co-founder, Dr. Tess Falor. A former athlete who had set her sights on becoming an astronaut, Falor developed ME/CFS in 2005 during her time interning at NASA’s Jet Propulsion Labs. She continued with her doctoral degree in Earth and Planetary Sciences, while simultaneously managing her symptoms and immersing herself in the ME/CFS literature. “My husband jokes around that I should have a second PhD in medicine, because of how many research papers I've read,” says Falor.

In 2022, Falor and her co-founder, Tamara Romanuk, began designing and crowdfunding their dual N of 1 study. Falor and Romanuk would take AmoxiClav antibiotics* in the hopes of triggering a “remission event,” what they describe as a sudden elimination of ME/CFS symptoms. In 2007, Falor first experienced one of these events by chance; she called it a “Level 2 remission event.” Falor had taken antibiotics for an unrelated infection and, shortly after, experienced brighter colors and higher energy than she could even recall from her pre-ME/CFS life. “That happened overnight,” Falor recalls. “I went to bed feeling horrible, and when I woke up, I was in that state of remission. It was almost like a switch flipping.”

Falor and Romanuk requested ImYoo’s at-home collection kits to capture molecular snapshots of their immune systems during these remission events. Back in 2007, Falor experienced several of these events at varying durations, from minutes to hours. Flash forward to the RemissionBiome study, and it wasn’t a guarantee that either of them could trigger these events with this intervention. However, with ImYoo’s kits on-hand, they could collect at a moment’s notice.

ImYoo would observe the relative changes in Falor’s and Romanuk’s immune systems, before, during, and after the anticipated remission events. Falor and Romanuk collected their first 3 baseline samples and then commenced their antibiotic intervention. Romanuk did not experience a dramatic remission event. However, Falor did. In fact, she experienced multiple events.

On day 2 of the intervention, Falor experienced a “Level 1 remission event,” characterized by reduced ME/CFS symptoms. She collected a sample for her first event and, on days 5 and 9 of the intervention, she experienced two more remission events and collected samples, respectively. After completing the course of antibiotics, Falor reported the return of milder ME/CFS symptoms compared to her condition before the start of the study. In the approximately two and a half months after stopping the antibiotics, Falor collected 3 more samples at this new baseline.

In total, Falor and Romanuk each captured nine samples. Longitudinal samples, let alone a single ME/CFS sample, are uncommon in the research world. “A lot of people [with ME/CFS] can't leave their house or they're even bed bound,” says Falor. “They can't take part in these research studies where you have to actually travel and go into the clinic,” she adds. To investigate the dramatic shifts in Falor’s symptoms, ImYoo dove deep into the data they generated for her. From these never-before-captured samples, ImYoo conducted its analysis and made a novel finding.

The sample collection schedule from the RemissionBiome N of 1 study. For more details, see the detailed research report.

The Remission Event Results

Supporting existing ME/CFS Research

The results from Falor’s samples, provided in an ImYoo report, coincided with the latest research on ME/CFS and may support some of the existing hypotheses that seek to explain the disease. ImYoo’s analysis flagged CD14 monocytes, also known as classical monocytes, an immune cell type implicated in chronic systemic inflammation. This cell type was also flagged by a Cornell University researcher Dr. Andrew Grimson, whose 2024 study similarly found that this cell type exhibited “the strongest signals of dysregulation” in ME/CFS patients. Together, these findings may provide a specific cell type to strengthen support for the Neuroinflammation Hypothesis of ME/CFS.

On April 11th, Grimson joined the RemissionBiome community for a virtual roundtable discussion. When asked about ImYoo’s findings he commented, “It’s consistent with monocytes being important.”

Grimson was also surprised by how clear ImYoo’s findings were. “There’s really no signal in any other non-monocyte cells?” Grimson asked. “That’s amazing, if that’s true.” To which ImYoo’s CTO, Dr. David Brown responded, “I did the most conservative analysis that we can do… After doing that, there wasn’t anything else that showed up in any of the other cell types.”

ImYoo flags a cell type by the number of gene “hits” it generates in their statistical analysis. The analysis generates a “hit” for every significant shift in a gene’s expression. Gene expression can either go up or down, depending on what functions the cell is executing, and a cell can upregulate or downregulate many genes in parallel. Genes can also interact through these complicated pathways. Despite this complexity, ImYoo’s analysis generated 29 hits, identifying 29 unique genes that changed during Falor’s reported remission event.

“By training machine learning models on our large database of cells, we identify groups of cells that share common features,” explains Brown. “It’s not like we saw genes upregulated everywhere,” he added. “These 29 hits were unique to this cell type. In my opinion, this suggests that there's a specific mechanism at play, rather than broad immune system-wide changes.” It’s possible that, among these 29 hits, lies a novel therapeutic target or biomarker.

Repurposing Existing Drugs and Identifying New Targets

One potential therapeutic target that ImYoo flagged was the gene CCL4. During the remission events, it was downregulated. In accordance with these findings, Grimson’s 2024 paper also correlated ME/CFS symptoms to this gene’s activity. The gene has been studied in animal models, where it was associated with metabolism reprogramming in immune cells. Meanwhile, in human models, Dr. Rob Phair at Stanford University is investigating the Metabolic Trap Hypothesis of ME/CFS. If an antibiotic can target CCL4, then perhaps it can regulate the immune system through these metabolic pathways.

“Your immune system is unique,” says Dobreva. “By measuring it over time, we could one day tailor-make drugs to your biology, or, at the very least, identify or dose existing treatments more appropriately.”

It’s known that antibiotics are a double-edged sword: They can kill bad bacteria, but they can also kill good bacteria. As they fend off infections, these antibiotics can disrupt the immune system. Similar to ImYoo’s observations with the AmoxiClav intervention, various other antibiotics have been shown to slow down monocytes, as well. In healthy individuals, immune disruption is an undesirable effect. But in people with chronic inflammation, it may provide an escape route from vicious feedback loops, like the “metabolic trap.”  The outcome of the RemissionBiome study may suggest that immune disruption through antibiotics is a path to controlling hyperactive immune systems.

A box plot showing the reduction in CCL4 gene expression in CD14 monocytes both during and after remission events. For more figures consult the detailed research report.

Through the lens of the microbiome, ImYoo’s findings may connect the dots between ME/CFS and Long COVID, as well. “This is actually really interesting, because it suggests that the microbiome (or microbial metabolites) can impact immune cell activation in this ME/CFS patient,” commented Dr. Lavanya Visvabharathy, a neuroimmunologist at Northwestern University. "This could have implications for Long COVID as well, considering how both conditions occur after viral infections." Long COVID symptoms are often debilitating, persisting in at least 10% of acute COVID infections. The symptoms are similar to that of ME/CFS, with researchers proposing that the two conditions share pathophysiology and even molecular mechanisms.

Steps to treat chronic fatigue through the microbiome are in their promising infancy. In Gulf War Illness (GWI), a common comorbidity with ME/CFS, Dr. Nancy Klimas is investigating fecal transplants as a treatment to repopulate the beneficial bacteria in these patients. It’s also being explored in autoimmune diseases like inflammatory bowel disease (IBD), an indication that ImYoo is currently investigating in its national decentralized studies.

“With our growing database, we hope to connect the dots across autoimmunity,” says Dobreva. “Surely, there are biomarkers that these diseases share. The immune system is the common link, and mapping it out will reframe how we think about disease.”

Next Steps

The results of this RemissionBiome-ImYoo collaboration have seeded hope for a new way of doing research. After completing this N of 1 study, Falor founded RenegadeResearch, a non-profit organization funding community-based studies like this one. They are fundraising to expand this N of 1 study and are also accepting calls for community-based trials in other diseases.

Meanwhile, ImYoo is expanding its platform to research other debilitating diseases with unpredictable, acute events that otherwise wouldn’t be captured in traditional, clinic-based studies. The company has been conducting an internal study in IBD and rheumatoid arthritis (RA) to analyze autoimmune flare-ups from the moment they occur at home. “Like ME/CFS, both IBD and RA flare-ups often prevent patients from getting to the clinic, so we’re excited to see what else we can uncover with timely sampling,” Dobreva shares. As it scales operations, the company is raising its next round of funding.

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About

For funding inquiries or research collaborations: contact@imyoo.health

For media inquiries: socialmedia@imyoo.health

Visit imyoo.health to register for ImYoo research studies & subscribe to exciting updates like these.

The full Remission Biome case study report can be accessed at https://imyoo.health/remissionbiomereport. Data from this study can be downloaded for non-commercial use at https://zenodo.org/records/11100300.

Thank you

Sequencing for this study was generously provided by Complete Genomics. In December 2022, ImYoo was a recipient of their G99 Sponsorship Program. Complete Genomics’ mission is to drive genomics forward with complete sequencing solutions that improve lives. By providing high-quality, cost-effective sequencing, they enable scientists to accelerate genomics research for precision medicine, making it more accessible for physicians and patients.

* Disclaimers

Medical Disclaimer: Both ImYoo and RemissionBiome would like to emphasize that this N of 1 study is not intended to be replicated without proper medical supervision. For that reason, this article does not disclose the details of Falor’s antibiotic regimen. This N of 1 case study is not intended to offer any clinical or scientific advice, nor conclusions, about diseases such as ME/CFS, Long COVID, or any other conditions cited in these writings. 

Scientific Disclaimer: ImYoo did not inform the design of this study intervention. Rather, ImYoo’s role was solely to provide observational data and analysis. The observations were made in one individual (i.e. an N of 1 study). Therefore, causality cannot be confirmed from ImYoo’s findings. ImYoo cannot confirm that the observed signals were due to the reported remission event, rather than a typical reaction to antibiotics. To distinguish between disease-specific response and general antibiotic response, ImYoo would suggest an additional study that measures immune response to antibiotic treatment. ImYoo acknowledges that, aside from the RemissionBiome intervention, other factors could have contributed to the results presented in this article. For more resources on how to interpret N of 1 studies, consult this article’s supplementary ImYoo report.

ImYoo’s primary objective of this collaboration was to showcase how at-home sampling can enable patient-led research. From this study, ImYoo demonstrated that longitudinal, molecular data can easily be generated for spontaneous biological events from at-home collections. Consequently, ImYoo generated data to share with their community. As a public benefit corporation, ImYoo’s mission is to engage all stakeholders in the careful process of scientific research and the thrilling prospects of scientific discovery.