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Sign UpRemission Biome is a Patient-Led Research Project
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Remission Biome
Remission Biome is a citizen science, patient-led project of the non-profit, decentralized research organization, Renegade Research. We are driven to improve the quality of life for patients with ME/CFS, Long COVID, and other infection associated chronic illnesses.
Our community is collectively self-experimenting with the Remission Biome protocol, which was born out of the discovery that one specific trigger, a commonly prescribed antibiotic, led to remission events for many patients. These remission events varied from minutes to days and, in many cases, led to improvements in baseline for various time periods. Remission events entail a complete cessation of all symptoms, as if the body were completely healed.
finding solutions
We Created Remission Biome to:
- Try to recreate these remission events.
- Study the remission events.
- Understand what was happening to trigger them and during.
- Discover if we could intentionally trigger them.
- Find a way to intentionally stabilize and improve our baseline function at the completion of the protocol.
We Triggered Remission Events!
Our initial small group of 3 self-experimenters grew to 13, and 10 out of the 13 experienced a remission event. We decided to invite more people to self-experiment with us, and we are now in the process of seeing what happens. We are committed to learning and adjusting as we progress so that all patients have access to a protocol they can implement under their healthcare provider's supervision to achieve a higher quality of life while awaiting long-overdue approved treatments or a cure. To learn more about our story click here.
Collaboration Leads to Innovation
We believe in the power of collaboration and patient wisdom. We plan to facilitate collaboration with all our stakeholders who share the common goal of serving patients. You all have valuable insights and resources to share with us. We invite patient researchers, researchers, clinicians, caregivers, and funders committed to disrupting systems that, until now, have not found a way to overcome the challenges delaying research and getting treatments into the hands of patients.
Why Projects Like Ours Are So Critical To Making Progress
Currently, an estimated 17-24 million patients around the world suffer from ME/CFS, and 65 million suffer from Long COVID with zero approved treatments. If a patient seeks treatment, they are more likely to encounter clinicians who not only don’t understand the illness or how to offer symptom management care but may even prescribe harmful treatments. A large percentage, 50-75% of patients globally, are too disabled to earn a living and, in many cases, unable to care for themselves.
From Unfair to Progress for All of Us
Patients are left having to become their own researchers, healthcare managers, and self-experimenters to seek relief from their disabling symptoms and the ability to return to supporting themselves.
Caregivers desperately seek to care for and protect their loved ones, often left feeling defeated in the face of such scarce resources or understanding of what they are going through.
Dedicated researchers who long ago committed to finding treatments and possibly a cure for us have not received enough funding to make progress, test promising discoveries, and certainly not commensurate with the disease scale or burden.
Talented clinicians juggle a patient roster that is overflowing, attempting to share their knowledge so that other clinicians can successfully help their patients from hard-won trial and error knowledge and decide if they can work with our insurance-based healthcare systems or national healthcare systems that won’t pay for the necessary 60-90 minute appointments that are needed for our complex cases.
Our project aims to utilize all of these frustratingly unfair struggles we share as stakeholders and turn it into something that can make progress for everyone.
We are creating a way to test treatments that don’t fit into the traditional academic research models, utilize patient knowledge and willingness to self-experiment, create forums for clinicians to more easily share their experiences with each other so we can improve patient access. And we’re doing it with a model that is committed to open-source, equitable access to progress.
Our Funding Model
We are a philanthropically funded organization. Our funding comes from a combination of generous donors who see the potential for us to utilize decentralized research to bypass systemic barriers, such as regulatory hurdles, high costs of research and development, lack of commercial interest, research funding bias, distribution, and access barriers with open-source, accessible solutions for patients with ME/CFS and Long COVID.
Remission Biome Is
- Empowering patients with MECFS & Long Covid to take charge of our health.
- Helping to overcome the delays in research and missing treatments in the clinical setting.
- Creating a new model of patient-led research.
Together we can transform research
How We Will Transform Research for ME/CFS & Long COVID
- Continuously test and refine the protocol with more self-experimenters.
- Share our data and conduct extensive data analysis.
- Tap into the collective wisdom of our patient researchers/self-experimenters to make breakthroughs in the protocol.
- Utilize our network to facilitate clinical roundtables to improve access to care and establish a foundation of clinical care that can help more people access innovative protocols with support.
- Foster creative collaboration between traditional researchers and patient researchers.
Our Role In The Future of Research & Treatments for Patients with MECFS & Long Covid
- Remission Biome is demonstrating how much patients have to offer.
- We're showing that research and progress can be made outside of a traditional model; you don’t have to be affiliated with a university.
- We can move quickly, differently, and on our own terms.
- We're applying what we learn to build a model and a system of how patients (not just for ME/CFS, Long COVID, or remission events) can work together as a community and replicate with other research projects.
* We're modeling how patient-led research and citizen science can collaboratively work with traditional academic researchers to amplify our efforts. - We're bridging the gap between patient-led efforts and clinical care so that patients can tap into care resources when trying to achieve a higher baseline and function.
FAQs
Here are answers to some of the most common questions we get asked.
Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome) is an infection-associated, multi-systemic chronic illness. There are no approved treatments, and research is grossly underfunded in proportion to the number of patients and the severity of the disease burden. There are very few clinicians with expertise in treating patients. On average, patients with ME/CFS take 8 years to receive a diagnosis. We invite you to learn more at ME Action.
Long COVID is a condition that affects patients after being infected with Sars-Cov-2 (also known as COVID-19 or Coronavirus from the 2020 Global Pandemic). At least 50% of people diagnosed with Long COVID meet the diagnostic criteria for ME/CFS. We are including patients with Long COVID as there are many similarities and they are commonly being studied together.
Many patients with Long COVID also experience organ damage, cardiovascular disease, pulmonary damage, brain damage, increased dementia risk, and clotting issues that can lead to loss of limbs, pulmonary embolism, heart attack, and stroke. We invite you to learn more at the Long Hauler Advocacy Project. To understand just how complex Long Covid is, please check out this article at Science Magazine by Dr. Zihad Al-Aly and Dr. Eric Topol - Solving the Puzzle of Long Covid and this paper published in Nature by Hannah Davis, Lisa McCorkell, Julia Moore Vogel, and Eric Topol. .
Citizen science is research conducted with participation from the public, non-traditional researchers, and, in our case, the patient community.
Citizen science can be used as a methodology where public volunteers assist in collecting and classifying data, thereby enhancing the scientific community's capacity. It can also involve more direct involvement from the public, with communities initiating projects to research environmental and health hazards in their own communities. Participation in citizen science projects also educates the public about the scientific process and increases awareness about different topics.
A patient-led organization means that the core team of leadership all have direct experience as patients with MECFS or Long Covid or they are caregivers for patients with our conditions. Our team is led by patients and in service to patients. This is different than most research entities studying our illnesses who are led by traditional academic researchers who have not experienced our illness first hand.
Being patient-led makes us uniquely able to understand the patient experience, tap into underutilized assets of patient wisdom, see potential breakthroughs that researchers not living in our bodies can’t see. We believe that being patient-led is our greatest asset.
We are deeply grateful to the researchers who recognize the value of the patient experience and contributions to research and applaud all of your efforts to increase patient involvement in your research.
Decentralized research is research conducted outside of the traditional academic and market driven pharmaceutical development systems. Through decentralized research, we aim to enhance participant access, improve retention rates, be more cost-effective, increase data quality, move faster with participant recruitment, and test multiple interventions at once.
Empowering Patients Through Groundbreaking Research
At Remission Biome, we believe in the power of patients. Our groundbreaking research model puts patients at the forefront, empowering them to drive innovation and find new solutions.
Patient-Led
Our research is driven by patients, ensuring that their needs and perspectives are prioritized.
Cutting-Edge
We utilize the latest technologies and methodologies to push the boundaries of medical research.
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Collaboration, Innovation, and Community Involvement
At Remission Biome, we are committed to fostering collaboration, driving innovation, and engaging the community in our patient-led research project. Through our unique approach, we aim to make a meaningful impact on the lives of patients.
Patient-Centric Approach
We prioritize the needs and experiences of patients, ensuring that their voices are heard and their perspectives are valued.
Cutting-Edge Research
Our research is at the forefront of scientific advancements, pushing the boundaries of what is possible in healthcare.
Empowering the Community
We believe in the power of community and actively involve patients, caregivers, and healthcare professionals in our research initiatives.