Renegade CrowdQuest is a coalition of patients, caregivers, clinicians, and researchers working to cure complex, multisystem, chronic conditions (CMCCs) like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID (LC), illnesses that affect hundreds of millions worldwide.

Despite their impact, these conditions remain vastly underfunded, with no FDA-approved treatments or definitive biomarkers. (Disease comparison statistics - provided by CrunchME) Traditional science cannot move quickly enough to bring patients back to health. Patients need to drive outcomes with lived experience, so, we’re taking action as a collaborative, and pushing the frontier of what’s possible.

Our Strategy

Our crowdsourcing plan:

1. We will start off by hosting community brainstorming sessions, like the X space held recently.

2. After $20k is raised through Juicebox to hire a staff member to run the rest of the steps, Renegade Research will then facilitate a crowdsourced review of all research done to date and compile a list of gaps in knowledge by gathering input on the CrowdQuest website. OMF will encourage researchers to contribute. After a one month input phase, Renegade Research will hold community meetings to discuss what has been gathered.

3. The community will then contribute project ideas to address those gaps on the CrowdQuest website. (The website just has example projects to show the contribution system right now. These are not necessarily projects that will move forward for voting.) Projects will move forward for consideration in a voting phase after enough funding has been raised in Juicebox to cover their budget and if the proposal team has the bandwidth at that point to run the project.

4. After at least three projects meet those criteria, the community will vote in Slack on which project to fund first.

5. Funding will be distributed to begin the project, whether that’s RR, OMF or another team able to meet the requirements of the community driven process identified project to begin the study. Two patient representatives will be included in the team for input on all phases. Quarterly reports on project progress will be shared with the community and a final paper will be published open access.