Thread by @ahandvanish

There are many ways to engage with #LongCOVID patients as a researcher without joining support groups, which compromises patients' privacy.

In addition to @patientled (associated with the @itsbodypolitic support group), here are a few options researchers may not know about.

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The COVID-19 Research Involvement Group has been around since spring 2020 and run by patient-researcher @Know_HG. It's associated with @long_covid support group and has over 2500 patients and researchers discussing Long COVID.

facebook.com/groups/2590602…

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The Medical & Scientific Collaboration group has been around since summer 2020 & is run by the renowned Long Haul COVID Fighters support group (@Amy_Ant, @katemeredithp). It also has about 2500 researchers & patients discussing avenues of research:

facebook.com/groups/3018438…

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Countless other #LongCOVID groups have mechanisms to let researchers speak to patients directly, including but not limited to @itsbodypolitic, @patientled, @LongCovidSOS, @apresj20, @apuakoronaan, @UTc19LongHaul, @C19LH_Advocacy, @LongCovidKids, @LongCovidItalia, & others.

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Importantly, these groups are based on the consent of patients. They know that researchers are in the groups & voluntarily talk about their symptoms, experiences, & ideas. This is contrasted with researchers scraping data from available public forums, a questionable practice.

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I'd be interested to know other formats where patients and researchers connect in other illnesses, especially with #pwme?

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To clarify, I mean the two research-based facebook groups above have researchers in them and patients know that and intentionally opt-in. The other support groups are private and have alternate mechanisms for communication with researchers!

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So there’s no making assumptions re: context, the context is 1) we’re getting lots of requests for researchers to enter our patient-only support group so highlighting alternatives & 2) this paper which scraped a public support group just came out: sciencedirect.com/science/articl…

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