Guess who's got a GoFundMe campaign? Support our cause by donating to help the Washington Heights/Inwood Mask Bloc cover test costs. https://t.co/Z3x86LjVIz #CovidIsNotOver#MaskBloc
@FedExHelp If you were willing to help at all, you would actually help instead of ONCE AGAIN telling me what I've already told you I know and have done.
Gotta love how @FedEx/@FedExHelp misdelivers a package & then absolutely REFUSES to fix the problem when you call, instead telling you to contact the shipper, even after you repeatedly explain that you've already done that and that the delivery guy frakked up, not the shipper
@FedExHelp Will y'all ACTUALLY help me get my package to the correct building after royally fucking it up, or just parrot the line of "contact the shipper" like the customer service rep did over and over and over again when I called?
Ms. Stone a force, and this important thread documents some of the key barriers to disabled and chronically ill people participating in legislative hearings.
Small correction: It should say, "If you are in crowded places and/or places with poor ventilation..." (or better yet, "indoor places and crowded places," regardless of ventilation, as good air quality is only one layer — an important one, but as with all layers, also imperfect)
If you are in crowded places with poor ventilation, #WearAMask.
Because it helps keep you and your community safe from #COVID19, flu and other respiratory illnesses.
And remember these other measures to help protect yourself and others from COVID-19, flu, measles and other respiratory illnesses:
-Practice hand hygiene and respiratory etiquette (cover your mouth and nose with a bent elbow or a tissue when you cough or sneeze)
-Keep a distance when possible
-Keep rooms well-ventilated
-Stay home if you feel unwell
-Get vaccinated and stay up to date with booster doses
My @disabilitychall film "Back to the Dark Ages" is out!
Know how there's been zero representation of characters who wear masks and/or have Long COVID in the media? That changes today! Watch the new dramedy "Back to the Dark Ages", which features the story of Christina, a woman living with Long COVID, who accidentally summons a medieval ghost who has lived through a plague or two in her own time. You can help us in the competition by liking, commenting on, and sharing the video linked in this post.
Authentically cast and made by a mostly disabled team working together with seasoned industry professionals, it was very important for me to make a piece with high production values to do this important topic justice.
https://t.co/pgc6NRfUlG
#covid #longcovid #longcovidaeareness #chronicillness #shortfilm #edfc2026
@julia_doubleday This! I have ADHD & have major trouble forming habits. Despite that, you know what's now so second-nature that it might as well just be part of getting dressed? Masking! It's one of the easiest habits I've ever formed, just by doing it daily and putting masks in unmissable spots.
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! 🙏
My Covid infection 3 years ago was so “mild” that one could have easily mistaken it for a cold.
That I’m now, 3 years later, terminally ill due to the effects of it, should be a very scary sign, especially considering my young age and healthy lifestyle prior to it.
How many more are out there just like me, unaware of what’s happening to their health or what’s causing it ?
Scary to think about.
@AgathasSapphic Like, the folks who try to make fit tests more available are frakking amazing and are usually doing their absolute best with the resources they have, but they can't be everywhere at once all the time.
@AgathasSapphic I feeellll this. Like, in an ideal world, would I like there to be super easy, accessible, and affordable-to-free ways to fit test? Absolutely. In that world, would I fit test? Heck yeah. But in the here and now, even the affordable-to-free options are often difficult to access.