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Remission Biome is a Patient-Led Research Project
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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.
We aim to do this by infusing patient-led research and patient-held insights throughout our stakeholder groups: research, clinical care, patient communities, health systems, and the public to catalyze change and speed up the race to treatments and cures.
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.
finding solutions
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.
We Created Remisson Biome To
1
Try to see if we could recreate the remission events
2
Study the remission events
3
Try to understand what triggered the remission events and why
4
Discover if we could purposefully trigger a remission event
5
Find a way to stabilize and improve our baseline function upon completion of the protocol
And 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.
77% of participants experienced a remission event
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.
Why Projects Like Ours Are So Critical To Making Progress
15-30 million
Patients around the world have ME/CFS.
65-68 million
Long COVID patients globally — and 50% or more meet diagnostic criteria of ME/CFS
0
FDA approved treatments or cures.
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.
Research is Underfunded
Feature one
ME is funded at 7.3% relative to the amount comensurate to its disease burden
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Source
Study Finds ME/CFS Most Neglected Disease Relative To Its Needs - Heath Rising
Very Low Quality of Life
Feature two
People with ME/CFS have lower quality of life
The average person with ME scores as more disabled on quality of life surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and cancer.)
Source
Ratio of Actual to Burden-Commensurate Funding of Underfundedn Diseases by Health Rising
Most People Undiagnosed
Feature three
We're In This Together
Our project is paving a path to utilize all of the following frustratingly unfair struggles we individually experience, and through collaboration with each other, create a model that can make progress for everyone.
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, care options, engagement with the health care system, or understanding of what they are going through.
Researchers with brilliant insights and drive to solve these problems must find supportive academic and funding sources to guarantee they can commit to the time it takes to do the research. The reality in comparison to what is needed impairs their speed and ability to do all the trials they need to get to answers, access to patient wisdom, ability to test multiple interventions at once, and recruitment of participants for trials.
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. They must 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.
Unable to provide the specialists or time needed to help patients with Infection Associated Chronic Illnesses. Very limited sources for how to assess, diagnose, help patients successfully manage symptoms which often results in patients deteriorating, health systems spending money on testing that leads nowhere. Patient care model that doesn’t allow for complex cases. For profit systems have no incentive to serve our population as there is no profit motive.
The public is unaware and unprepared for the coming wave of increased Long COVID cases. Research predicts (See Data - Chart 2) that 37.9% of people who are infected 3 times with COVID will likely develop Long COVID. They will face untrained clinicians who don’t know how to recognize their symptoms or care for them. They may lose their jobs, their relationships, their ability to care for themselves. Our society will be faced with potential collapse as more people are disabled and unable to contribute to the global economy.
Collaboration
Leads To
Innovation
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.
Restorative Paradigm for People with ME/CFS
> 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.
How We Will Transform Research For ME/CFS
> Continuously test and refine the protocol with more self-experimenters.
> Tap into the collective wisdom of our patient researchers/self-experimenters to make breakthroughs in the protocol.
> Share our data and conduct extensive data analysis.
> Utilize our network to facilitate clinical roundtables to improve access to care
> 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
Patient-Driven Solutions for People with ME/CFS
> 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 modeling how patient-led research and citizen science can collaboratively work with traditional academic researchers to amplify our efforts.
> 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 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.
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 with open-source, accessible solutions for patients with ME/CFS and Long COVID, such as:
- Regulatory hurdles
- High costs of research and development
- Lack of commercial interest
- Research funding bias
- Distribution
- Access barriers
Together we can transform research
Crowdfunding
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Donations/Grants
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Sponsorships
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Collaboration
Leads To
Innovation
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.
New Paradigm for ME/CFS
Feature one
Restorative Paradigm for People with ME/CFS
- 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
New Treatments
Feature two
Restorative Paradigm for People with ME/CFS
- 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.
- 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
Patient-Driven Solutions
Feature three
Restorative Paradigm for People with ME/CFS
- 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're modeling how patient-led research and citizen science can collaboratively work with traditional academic researchers to amplify our efforts.
- We're modeling how patient-led research and citizen science can collaboratively work with traditional academic researchers to amplify our efforts.
- 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 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.
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.
Customer testimonials
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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.
Upcoming Events
We facilitate events to further our collective goal of improving the quality of life of our patient community. Upcoming Clinician's Roundtables, Research Roundtables, and Educational Seminars are updated frequently. RSVP below, join our newsletter below for invites direct to your inbox, or watch some of our previous events here.
Dr. Vicenç Gilete & Amy, Barcelona, Spain
Neurosurgeon, Spine Surgeon CCI/AAI, Chiari, Tethered Cord, Scoliosis.
Dr. Afrin, Purchase, NY
Mast Cell Activation Syndrome & Hematology /Oncology Specialist.
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