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