Back in June, NURA Community was featured in The Sick Times. The Sick Times is a journalist-founded website chronicling the Long COVID crisis.
You can read the article featuring NURA below (republished with permission).
New Long Covid and ME apps aim to share information, build community
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June 11, 2024
Two new applications designed for people with Long Covid and Myalgic Encephalomyelitis (ME) offer opportunities to share information about the diseases and build community, outside of the larger social media platforms that some people find overwhelming and unhelpful.
Both platforms, Turnto Long Covid and NURA Community, were designed with input from people with Long Covid. Turnto Long Covid is a new, custom-made application that follows the company’s similar app for people with cerebral palsy, while NURA Community customizes an existing platform with a Long Covid and ME-specific space.
Turnto aims to bring together information from different sources and close gaps, said Ally Niemiec, who lives with Long Covid and serves as the community lead for the company’s Long Covid app. Though many scientists are working on Long Covid research and people with the disease are testing different options to manage their symptoms, there are “all these gaps” between research, patient experiences, and the guidance people receive in doctors’ offices, she said. The Turnto app disseminates information from these different sources in a format designed to be accessible to people with Long Covid.
The NURA Community team has a similar goal, though they are more focused on building connections between people with Long Covid and ME. It started from “a personal desire to feel more connected to people,” said Anya Mishra, founder of NURA Community. This platform offers online forums and events for people with Long Covid and ME to answer each other’s questions, share resources, and connect about interests and hobbies unrelated to the diseases.
Larger social media platforms like Facebook and Reddit can be “too broad and distracting,” Mishra said. She aimed to “create something a bit more bespoke, a bit more specific and relevant for people with Long Covid and ME/CFS.”
The Turnto Long Covid app launched last week in the Apple and Google Play stores, and NURA Community launched earlier this year with app and web browser options.
Turnto Long Covid makes research news accessible
Jessica Dove London founded Turnto because of her experience caring for her two sons, who live with cerebral palsy, though she also has a history of ME. After talking to doctors who she found dismissive, she “just fell down the rabbit hole of the internet,” she said. “Losing myself in Facebook groups, reading lots of journal articles.”
As London developed more expertise in following cerebral palsy research, she found that novel science and potential innovative treatments were not reaching the patient community. “This should be on my phone,” she recalled saying at a cerebral palsy conference where scientists were presenting their work. “You shouldn’t have to fly around the world to learn about some of these treatments.”
London began sharing treatment options and other research updates through a website, then fundraised to develop a new phone app, Turnto Cerebral Palsy. After many rejections and a lot of “blood, sweat, and tears,” as London put it, the company has raised a successful pre-seed round, with backers including the founders of Canva and Google Maps.
Following success with the cerebral palsy app, which launched in summer 2023, Turnto has focused on Long Covid and ME as its second community. Niemiec joined the company as the community lead for this second app, and has done research and user testing with the Long Covid community to adapt the platform for this group, building on her own background in clinical research.
Using the app, which publicly launched last week, feels similar to using TikTok or Instagram, as users scroll through videos, graphics, and text summaries. Its central feature is “daily drops,” a selection of multimedia updates posted each day including summaries of new research papers and news stories, testimonials from experts and other app users, and prompts to answer polls or questions. The “daily drops” are designed to be short and accessible, delivering key information without requiring any time spent searching through news sites or social media.
Users can also search through the app’s library for past content about a certain topic and can customize their feeds by selecting topics, treatments, and research and advocacy groups about which they want to see updates. The Turnto platform uses artificial intelligence (AI) to provide custom information feeds and to assist with summarizing research and news, though London emphasized that “humans check everything” shared with users.
The app’s biggest benefit for people with Long Covid is “the accessibility of all this health information” without a need to expend much energy looking for it, Niemiec said. For her, Long Covid “has taken away the ability to fully sit down and read a full scientific research article,” she said. She’s excited about reading quick summaries from the “daily drops,” though she noted that Turnto summaries always link to the full paper for users who are interested in diving in more.
The app’s biggest benefit for people with Long Covid is “the accessibility of all this health information” without a need to expend much energy looking for it. Ally Niemiec
NURA Community offers deeper connection
Mishra started NURA Community in response to her frustrations with social media, as she personally found large platforms were not helpful and talked with others who shared her challenges. These platforms can be overwhelming and not moderated, she said, leading some people to question the reliability of the information they find.
“What people need from community, especially for chronic illness, can vary a lot. And it can change at different points in your illness,” Mishra said. Some people primarily look for “emotional support or validation,” while others want “more practical support,” such as options for managing symptoms, finding healthcare providers, and adapting their day-to-day lives around Long Covid.
In response to these different needs, NURA Community is set up as an online forum, similar to Facebook or Reddit, with different threads about specific topics. Users can access the forum on a computer or phone. Mishra used the platform Mighty Networks to customize this Long Covid and ME-specific space; the threads include discussions about symptoms and treatments, pacing, family and relationships, work and finances, and more.
Building on the conversations in these threads, NURA Community hosts online events through Zoom. Some events bring in expert guests, such as scientists who discuss the science behind Long Covid and ME and clinicians who can offer advice, such as an upcoming event with a chef who will talk about making cooking more accessible when living with energy-limiting symptoms. Sub-committees within the NURA space also organize their own events, such as a writing group for creative writers.
Following NURA Community’s launch in early 2024, the online space currently has around 400 users, mostly in the U.S., U.K., and other parts of Europe. While the smaller user base has been helpful for making connections, Mishra would like to see it branch out more, especially to people living in countries where Long Covid is under-recognized and community support may be more valuable.
Lydia Fischer-Dooley, NURA Community’s events coordinator, has found the platform’s format and close-knit user base valuable for making friends within the Long Covid and ME patient communities. “I’m two years in now [to living with Long Covid], and I’ve really only made ME/CFS friends in the last couple of months through NURA,” she said.
Mishra emphasized that, while NURA Community is specifically for people living with these diseases, people can join at any stage of their illness. “Whether or not you have a diagnosis… whether it’s mild, whether it’s severe, there is a space for you here,” she said.
Informing research and advocacy
Within a week of Turnto Long Covid’s public launch, nearly 1,000 people have joined the app, London told The Sick Times. The app’s Long Covid and ME feed has quickly filled up with introductions from new users, summaries of research papers, resource recommendations, and more.
Turnto aims to provide its users with “breakthroughs” in their diseases. These breakthroughs don’t necessarily need to be major medical milestones, Niemiec said, but rather can include “sharing little bits of your day, and ways you’ve adapted to managing your symptoms.” For example, for her, the realization that people with Long Covid can use wheelchairs as mobility aids was a breakthrough: “Getting a wheelchair allowed me to leave my house for the first time in a month,” she said.
NURA aims to offer similar insights through community conversations. Both apps also seek to inform Long Covid and ME research, by offering scientists and clinicians data and recommendations from the patient community. Turnto’s cerebral palsy app has helped inform research into treatments for that disease, London said, and she has received interest from Long Covid researchers as well.
While expressing excitement about the future of these community spaces, the leaders of both Turnto Long Covid and NURA Community acknowledge the time and resources needed to build and maintain these platforms. Other Long Covid spaces developed earlier in the pandemic, such as the Body Politic support group, have shut down due to challenges with funding.
Some advocates have previously called for government agencies to directly fund these support groups. In the meantime, London is optimistic that investors in the tech and venture capital industries are beginning to recognize the value of her work. Turnto’s investors understand that Long Covid and related chronic diseases are “a global problem” that “needs to be solved,” she said.
All articles by The Sick Times are available for other outlets to republish free of charge. We request that you credit us and link back to our website.
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