<div>Building a Patient-Owned Complex Care Co-op for Invisible Illness
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<div>Millions of people with “invisible” illnesses like ME/CFS, POTS, long COVID, EDS, MCAS, endometriosis, and fibromyalgia are falling through the cracks.
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<div>They’re often too sick to work, dismissed by doctors, and left to navigate life-altering symptoms with almost no support.
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<div>Photo Credit: National Cancer Institute on Unsplash
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<div>We’re changing that by building a patient- and clinician-owned complex care co-op—not owned by private equity, not controlled by insurance.
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<div>Through the Center for Complex Illnesses and its first initiative, The Invisible Illness Project, we’re building what the current system has not:
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<li>Peer support so no one has to navigate alone.
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<li>Increased testing access to shorten the diagnostic maze.
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<li>Education, training &amp; recruitment of specialists who actually understand these conditions.
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<li>Patient-led research that reflects real lives, not just textbook cases.
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<div>We’re a tiny, patient-led effort with a big vision—and we need your help to keep going and grow.
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<div><strong>Our Story</strong>
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<div>Hi, I’m Eddie, and I’m the founder of the Invisible Illness Project and the Center for Complex Illnesses co-op. I’m also a patient.
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<div>Over the last few years, I went from a high-performing engineer and parent to someone wrestling daily with severe fatigue, autonomic dysfunction, metabolic instability, and pain.
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<div>I’ve experienced:
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<li>being told “it’s just anxiety” when my body clearly wasn’t okay,
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<li>bouncing between specialists who didn’t talk to each other,
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<li>trying to manage complex symptoms while raising kids and trying to work, and
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<li>the constant fear that getting help will cost more than I can afford.
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<div>Like so many with ME/CFS, POTS, long COVID, EDS, MCAS and other “invisible” illnesses, I learned pretty quickly: if you don’t advocate for yourself, no one else will.
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<div>I started creating evidence-based content and practical tools—first just to survive, then to help others who were just as lost as I was.
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<div>That work has grown into the Invisible Illness Project and now into a broader co-op ecosystem with one mission:
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<div>Make life with complex chronic illness safer, more manageable, and less lonely—right now, not 10 years from now.
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<div><strong>The Problem We’re Trying to Solve</strong>
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<div>People with invisible illnesses face a brutal combination of:
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<div>-High symptom burden, low energy.
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<div>-Large number of complex debilitating symptoms that make it nearly impossible to manage complex care plans or long appointments.
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<div>Medical gaslighting &amp; dismissal.
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<div>Many are told it’s “just anxiety,” “deconditioning,” or that their symptoms aren’t real—delaying care and worsening long-term outcomes.
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<div>Lack of coordinated care.
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<div>Patients juggle specialists, tests, labs, and medications with no one looking at the full picture.
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<div>Financial strain.
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<div>Many can’t work, are under-employed, or are spending what little they have just to stay afloat.
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<div>On top of that, they’re expected to:
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<li>track symptoms,
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<li>remember complex histories,
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<li>discover what helps or harms, and
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<li>educate every new provider from scratch.
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<div>It’s unrealistic—and cruel.
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<div>That’s why we’re building a co-op model that patients, caregivers, and clinicians can own together, focused on four pillars:
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<li>Peer Support
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<li>Increasing Testing Access
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<li>Educate, Train &amp; Recruit Specialists
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<li>Patient-Led Research
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<div>What We’re Building
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<div>1. Patient-Led Research &amp; Innovation
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<div>We believe people living with these conditions are not just “subjects,” but experts in their own bodies. As part of our co-op, patient-led research means we are:
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<div>Exploring wearable-based autonomic monitoring to help detect PEM, orthostatic crashes, and stress patterns earlier.
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<div>Drafting case reports and research concepts that highlight mechanical–autonomic interactions, HPA axis stress, and complex multisystem presentations—so future clinicians have something better than “we don’t know.”
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<div>Designing ethical, patient-centered pilot projects that can eventually feed into larger trials and collaborations with academic labs and clinicians.
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<div>Aiming to build a tech-enabled therapy that reduces the impact of dysautonomia and related autonomic issues over time.
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<div>Our goal is simple: Turn lived experience and real-world data into better care pathways and, eventually, better treatments.
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<div>2. Peer Support &amp; Peer Patient Advocates – “Each One, Teach One”
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<div>The healthcare system is not built for people who are bedbound, housebound, or barely hanging on.
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<div>That’s why one pillar of our co-op is Peer Support, and a big part of that is our Peer Patient Advocate program.
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<div>We plan to train experienced patients to become peer advocates who:
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<div>help other patients prepare for appointments and tests,
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<div>review symptom histories and medical summaries together,
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<div>practice how to explain symptoms clearly and calmly to providers,
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<div>document what happens in visits, and
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<div>hold providers more accountable through better documentation and follow-up.
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<div>The model is: Each one, teach one.
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<div>Patients taking on each other’s cases—so no one has to walk into a complex appointment alone.
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<div>This isn’t legal or medical representation. It’s peer support + organization + documentation + mutual accountability—turning isolated patients into a community that knows how to navigate the system more effectively together.
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<div>Donor support helps us:
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<div>develop training materials and scripts,
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<div>provide small stipends or support to peer advocates (many of whom are disabled themselves),
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<div>create templates for visit prep, letter-writing, and documentation.
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<div>3. Practical Tools for Daily Life &amp; Care Coordination
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<div>We’re building and sharing tools that make life with complex illnesses a little less impossible:
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<div>A symptom and trigger tracking web app designed for PEM, dysautonomia, and complex chronic illness—focused on ultra-low-friction logging and pacing, not “hitting step goals.”
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<div>Printable and digital medical summaries, visit prep guides, and safety plans that patients can take to appointments.
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<div>Guides for:
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<div>managing very severe PEM at home,
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<div>preparing for surgery when you have dysautonomia or EDS,
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<div>recognizing red flags like medical gaslighting or autonomic crises, and
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<div>surviving day-to-day realities like living alone with severe PEM.
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<div>The goal is to give people ready-to-use, low-energy tools that meet them where they are.
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<div>4. Evidence-Based Education &amp; Storytelling
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<div>Education underpins the entire co-op. We turn dense, often confusing research into clear, accessible explanations that people can actually use:
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<div>Short videos, scripts, and posts on ME/CFS, PEM, POTS, dysautonomia, EDS, MCAS, chronic pain, long COVID, and more.
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<div>Content on medical gaslighting, the HPA axis and chronic stress, autonomic dysfunction, and suicide risk in chronic illness—always framed around safety and practical steps.
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<div>Blog posts and guides that patients can literally hand to providers as conversation starters.
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<div>Many of the people we reach:
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<div>don’t have access to specialists,
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<div>are bedbound or housebound, and
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<div>are desperate for something more concrete than “reduce stress.”
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<div>Education is how we make sure that every tool, every bit of research, and every peer advocate is backed by the best information we can find.
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<div>Where Your Gift Will Go
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<div>Because we’re still small and patient-led, every dollar matters. Your support helps us build this co-op ecosystem:
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<div>Keep resources online &amp; accessible
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<div>Hosting and infrastructure for invisibleillnessproject.org and co-op resources.
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<div>Captioning, accessibility improvements, and translations so people worldwide can use them.
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<div>Build and improve patient tools
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<div>Design and development of the symptom/pacing web app for ME/CFS, POTS, long COVID, and related conditions.
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<div>Creation and updating of printable guides (PEM emergency plans, clinic visit templates, medication &amp; symptom logs).
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<div>Launch and sustain Peer Support &amp; Peer Patient Advocates
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<div>Designing training materials and scripts for peer advocates.
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<div>Providing modest stipends or support for advocates who are themselves disabled or low-income.
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<div>Developing systems for safe, ethical documentation and handoffs.
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<div>Support early patient-led research and pilot projects
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<div>Time for data analysis and writing so we can move from “N=1” stories to patterns, case series, and eventually publishable work.
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<div>Small pilots that explore better ways to monitor autonomic function and guide care.
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<div>Make education sustainable
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<div>Allowing us to continue producing high-quality, evidence-based content even when personal health or finances are stretched thin.
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<div>Even small amounts make a real difference:
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<div>$25 helps us design &amp; share a new downloadable guide.
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<div>$50 supports production of an evidence-based video or blog post that may reach thousands of patients.
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<div>$100 pushes forward development on the symptom tracking / pacing app.
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<div>$250+ helps fund research and peer advocate training and support.
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<div>Why Now
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<div>There is growing awareness of long COVID, dysautonomia, and ME/CFS—but for most people, daily life hasn’t gotten easier.
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<div>The gap between what researchers know, what clinicians are trained to do, and what patients actually live with is still enormous.
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<div>We’re trying to build a bridge in that gap—by combining:
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<div>patient-led research,
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<div>peer advocates &amp; peer support,
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<div>practical tools, and
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<div>clear education—
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<div>inside a co-op structure that we own together, not one owned by investors or insurers.
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<div>The sooner we can make this sustainable, the more people we can reach—and the better we can serve those who are too sick to advocate for themselves.
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<div>How You Can Help
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<div>Donate if you’re able. Any amount helps keep this project—and the co-op vision—alive and growing.
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<div>Share this campaign. Share the link with friends, family, patient communities, and clinicians who care.
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<div>Support in non-financial ways. If you can’t give money, you can still:
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<div>share the Invisible Illness Project site,
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<div>amplify educational content, or
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<div>send this to someone who might be able to help.
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<div>From one patient and parent to another: thank you.
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<div>Thank you for believing that people with invisible illnesses deserve more than “We don’t know” and “Good luck.”
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<div>Thank you for helping us build something real—for the people who are too sick, too exhausted, or too dismissed to build it for themselves.
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<div>With gratitude,
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<div>Eddie
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<div>Founder, The Invisible Illness Project &amp; Center for Complex Illnesses Co-op
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<div>invisibleillnessproject.org
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Valerie Nwadeyi

Help Transform Research and Advocacy for Invisible Illnesses

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