Case Study Clinical Trials & Research November 9, 2023 Solve Together: A platform for ME/CFS and Long Covid patients The Solve ME/CFS Initiative (Solve) is a non-profit organization that aims to advance research into diagnostics and treatments for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid, and other complex post-infection diseases. To this end, CareEvolution has partnered with Solve to launch Solve Together. Built on MyDataHelps, Solve Together collects and aggregates real-world data, including participant-reported outcomes/surveys, wearable data, and electronic health record (EHR) data. Solve Together not only works to connect patients with clinical trials, but also empowers them to observe their own health patterns, track their symptoms, and share reports with their doctors. Join Solve Together If you’re over 18 and live in the United States, you can join Solve Together—even if you don’t have ME/CFS or Long Covid. Join Solve Together By the numbers 2.5M* ME/CFS cases in the United States1 43M* Long Covid cases in the United States2 46% of Long Covid patients meet criteria for ME/CFS2 $362B* economic impact of ME/CFS in the United States2 $3.7T economic impact of Long Covid in the United States3 *Up to Background ME/CFS is a complex, chronic disease—often triggered by a viral infection—that significantly impacts a person’s ability to go about their daily life. Common symptoms include fatigue, post-exertional malaise, and cognitive dysfunction. Long Covid encompasses a similar collection of symptoms that linger following a COVID-19 infection. There is currently neither a cure nor FDA-approved treatment for either ME/CFS or Long Covid. Solve is a non-profit organization that drives research into diagnostics, treatments, and cures for post-infectious diseases like ME/CFS and Long Covid, and advocates for patients suffering from these diseases. As part of this mission, Solve established a new digital platform for patients: Solve Together. Solve Together is about empowering patients with their own data. Patients can track daily symptoms, easily download reports for their doctor, and organize their EHR. If they have a wearable like a Fitbit, Apple Watch, or other wearable device, they can also connect it to Solve Together and choose to receive “pacing notifications” based on their steps or heart rate. Solve Together is about furthering ME/CFS and Long Covid research. The patient community’s powerful, real-world data will be used to look for better diagnostics, treatments, and cures for ME/CFS, Long Covid, and other post-infectious diseases. Patients can also be contacted and recruited for additional clinical trials or studies. ME/CFS and Long Covid patients, especially those who are classified as “severe”, are often unable to travel to research sites or have energy to undergo burdensome tests. Solve Together enables patients to easily participate from home and share valuable wearable and EHR data quickly and easily, greatly expanding the breadth and depth of the research that can be performed. See Solve Together in action: Spotlight: Pacing notifications A hallmark symptom of ME/CFS and Long COVID is post-exertional malaise (PEM). The best known treatment for PEM is pacing: trying to balance activity with rest to avoid triggering PEM. Participants in Solve Together who connect a wearable device can enable “pacing notifications”. Pacing notifications empower individuals to manage their energy. When someone exceeds preset activity or heart rate limits, their phone alerts them. These real-time notifications let people choose to pace themselves and avoid overexertion. Spotlight: Surveys designed with patients in mind Solve and CareEvolution partnered to design the Solve Together surveys with ME/CFS and Long Covid patients in mind. Even minor exertions like completing surveys can trigger symptoms, so each survey includes a rating for effort level. This empowers patients to pace themselves. With an auto-save feature, participants can pause surveys to rest when needed without losing their place. Solve Together surveys aim to gather crucial data while minimizing the burden on patients. Spotlight: Personalized symptom log For complex chronic diseases like ME/CFS and Long Covid, coming prepared to doctor’s appointments can be overwhelming. Each patient may experience a myriad of different symptoms. Solve Together embeds the functionality of Symptom Shark—designed by an ME/CFS patient—to make logging symptoms and communicating with doctors easier. Patients choose which symptoms they want to log, using terms that make sense to them. Logging symptoms takes just minutes each day and results in easily viewable statistics and trends of symptoms logged. The patient can also generate PDF reports to bring to their next appointment or to otherwise send to their doctor, reducing the stress of their next visit.
