#longhauler — Public Fediverse posts

#C19LAP member, division lead & 4 year #Longhauler @TammyWilshire1 speaks with @pfizer for their “Dear Scientist” series.

Pfizer developing ways to study the disease & partner w/ orgs, med centers, & clinics to investigate potential treatments.
https://sponsored.bostonglobe.com/pfizer/long-covid-dear-scientist/

Fresh #introduction for 2024: The Year It All Comes Crashing Down!

I'm Sean - a formerly prolific rock #musician, current #foss engineer, full-time #audioEngineer at a busy roadhouse #theatre and #covid19 #longHauler, almost 2yrs with #pem, #pots, and an host of other goodies. #wearAMask #saveALife

I like working on projects that enable marginalised persons to take back their autonomy on and offline. I subscribe to #diy and am a voracious #autodidact. I make #bots for #mastodon and the #fedi. I'm building a replacement for #bandcamp and #spotify.

I care about all #humans and #animals on this planet, an am strongly aligned against their destruction via a #socialist #anarchist education. I'm against all #fascists, and call #bullshit where I see it, and I see every #microexpression. I'm pretty #autistic.

I #protest for #humanRights, #disabilityRights, #lgbtqRights, against #climateDestruction, #corporateGreed and for a #ceasefireNow in #palestine.

I educate myself on the world around me - with help from y'all - and I do my best to educate and #lift those around me.

I'm friendly, weird, and irreverent. Feel free to follow, boost and interact. This is a social media!

If you could give the world a message about #longcovid in 1-2 sentences, what would you say?

#PSA #C19LAP #Longhauler #IACC #InfectionAssociatedChronicIllness #COVID #disability

What have you developed as a result of #LongCOVID?

#LongCOVID is systemic and results in a collection of associated conditions, making care extremely difficult to find and/ or coordinate. These specialties lack interest and therefore clinicians and researchers within. We need more clinician education and research into these conditions!

#C19LAP #Longhauler #IACC #InfectionAssociatedChronicIllness #med #COVID #disability

The only way to #preventlongcovid is to prevent #Covid. How do you prevent infection?

#C19LAP #Longhauler #IACC #InfectionAssociatedChronicIllness #medtok #COVID #disability

What type of medical provider have you found most helpful in managing your #longCovid (if found).

#C19LAP #Longhauler #IACC #InfectionAssociatedChronicIllness #COVID #disability

#LongCOVID is a complex and systemic illness, requiring multi-specialty care and coordination. The underlying mechanism of #longCOVID has not yet been proven, but several theories have risen to the top of the list. Preventing #COVID -19 is the only way to prevent #LongCovid.

#C19LAP #Longhauler #IACC #InfectionAssociatedChronicIllness #medtok #COVID #disability

@everyone

Have you found a COVID-Competent provider?

Help others find local medical providers who won’t waste their time or spoons and are familiar w/ #longcovid and it’s associated conditions! Add a provider to the list! https://docs.google.com/forms/d/e/1FAIpQLSc460ZIEcwm2gOjeDtOlIq2KZWgfw5NUIBUqKuiQ1nRO_dQ_A/viewform

Check out the current list: https://docs.google.com/spreadsheets/d/1qRz6jcMX2Yx7_prnJqdBQFXgVJE_CgZSlIYNshW3XJM/htmlview

#longhauler #fblc #longcovidawareness #medtwitter

Slowly figuring out how to make the Fitbit work better for #pacing. It's set up to be constantly all "rah! rah! climb those stairs! burn that fat! get that heart rate up!" quite aggravating, to say the least.

But I think I got most of its little cheers turned off, and I figured out I can set my own maximum heart rate. The fitbit still thinks I should be in higher "zones" as much as possible, which is annoying.

I just programmed a custom zone, though, which goes from 10bpm above my resting rate to 5 below my max. Hopefully I'll be able to see on the graph when I've been exerting a little but not too much.

#PEM #PESE #PENE #MECFS #ME #CFS #fibromyalgia #Fibro #ChronicIllness #LongCOVID #LongHauler

So far, so good with the #pacing.

Still getting the feel for some of the more difficult-to-quantify symptoms, but wearing a heart-rate monitor is helping me identify how it feels when I'm pushing a little or a lot.

Also using the Visible app, which seems useful so far. I needed a low-maintenance way to track symptoms, and I'm interested to see what trends build up with heart-rate variability.

Please feel free to share your own experiences!

#LongCOVID #MECFS #ME #CFS #fibromyalgia #fibro #PEM #PENE #PESE #LongHauler

ABCNewsLive did a phenomenal 11 minute piece on #LongCovid featuring the COVID-19 Longhauler Advocacy Project's very own Dir of Education, Netia McCray, and Founder, Karyn Bishof! They discuss life before the pandemic and how dramatically it's changed living with #LongCovid. 1/2
https://youtu.be/lGGtXpSpiJY

#FBLC #longhauler #COVID #PASC #LongCovidAdvocacy #longcovidawareness #longcovidresearch #longcovidsupport #longcovideducation #longcovidrecovery #longcovidassociatedconditions #LC #LCAC