N🤗VA ME-CFS/POTS/LC/FMS etc Support Group retweeted
We're looking to conduct a pilot run of a COVID Defense Kit to reduce the risk of reinfections among people in the U.S. with #LongCOVID.
Do you have any suggestions?
Our prior pilot was specifically for people with cancer and published in JAMA-NO (link in next).
That COVID Defense Kit included the following:
-An educational booklet on airborne transmission and multi-layered mitigation (this will be a public website soon)
-5 FlowFlex rapid tests
-50 N95/KN95 masks tailored to the sizes/needs of the individual and their household/family/visitor needs
-2 DIY air purifiers
We could mail the kits anywhere in the U.S. To track the data needed to yield generalizable knowledge for academic research and push for program scaling and eventual policy change, we had all participants do a brief survey pre-kit and then a 1-month follow-up survey on what from the kit they used, what they liked best, etc. We compensated $100 for that time, in addition to the kit being free (about a $220 value, so about $320 total).
Possible improvements:
-We could include a DIY fit-testing kit
-We could include fewer masks initially and then send a 2nd batch once the "best" mask(s) get identified
-For a 1-month follow-up, 5 rapid tests seemed sufficient, but open to ideas on that
-The booklet is very mitigation focused. We could add info on fundamental coping strategies (this is not psychologizing LC, just acknowledging ostracism is stressful for anyone taking C19 seriously), provide suggestions for how to talk to family, friends, co-workers, etc. I'm not sure if any of this is needed or what the greatest need would be. As noted, we're working on a website, so it's not a big deal to have "too much" info, and people can use what they want.
-We could do a longer follow-up window (3 or 6 months), but this gets tough in a pilot project that's a limited total time frame
-Other ideas?
Sorry if any of that seems offensive. I've mostly steered clear of substantive LC work because the important priorities are diagnostics and treatments; there's also a lot of incorrect psychologizing of LC. That's not my intent. I'm increasingly concerned about the impact of repeat infections 6+ years into this with a pessimistic near-term horizon on the treatment front. I'm also seeing in our real-world data that things like mask fit discernibly matter in terms of cumulative infections, even in the CC community.
Thanks for any thoughts! 🙏
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