Thread by @karenlubell on Thread Reader App – Thread Reader App

https://threadreaderapp.com/thread/1529914994548166659.html

> @karenlubell: If Covid does deplete connective tissue, then #longhaulers should start looking a lot like patients with the connective tissue disorder Ehlers-Danlos Syndrome (EDS). One of the problems of EDS can be i...…

Finally got an echo and a tilt table test setup...in May.

What a wonderful country we live in where I get to pay $25k/yr in JUST premiums to wait 5 months for an echo

#LongCovid #LongHaul #LongHaulers #POTS #Healthcare #UniversalHealthcare

Jonathan Toews, I salute you! It's tough reading about a professional NHL athlete who is also suffering with the effects of post-COVID infection.

But in a way, his public discussion of this topic means more awareness for the 20% of us who are disabled for an extended period of time.

Hopefully more will come forward with their struggles, and we can have an open conversation about where to go from here.

(I am fully aware that's not how our society works in regards to chronic illness, but it's nice to dream about...)

https://wgntv.com/news/medical-watch/what-is-cirs-a-closer-look-at-the-immune-syndrome-that-sidelined-jonathan-toews/

#LongCovid #LongHaulers #Toews #NHL #ChronicIllness #COVID #Disability

Oh, we're going to do shingles a second time in less than a year?

Alrighty then.

#LongCOVID #Shingles #DoubleTrouble #Longhaulers

@MizeDesigner thank you!!! I do feel good about what I’m doing for my wife and others like her ( #LongHaulers ). It’s just so much like I’m on an island sometimes. I guess i just needed to be reminded that I’m not the only one on the island, and y’all aren’t kicking me off for wearing it. Thanks again.

Much of me is lost
I do not like what is left
Perhaps that will change

#haiku #LongCovid #LongHaulers

@LongCovidPharmD has a massive survey for #LongHaulers of all stripes: #PwME, #mecfs, #LongCovid. It's looking at a large number of treatments and how effective they've been (or not!). She's broken it into sections to ease the load. Please contribute your experience!

https://www.surveymonkey.com/r/TREATMEANDLC

Fucking heart.

At this point, a bionic one with no pulse would be life changing. At least I wouldn't see my heartbeat in my vision, or constantly feel like it's skipping.

#LongCOVID #LongHaulers #dysautonomia

Fuck it, I'm contacting the UPMC Post-COVID clinic tomorrow. The BINGO card is mostly full

Anyone currently seeing them? Thoughts/Suggestions?

#LongCOVID #LongHaul #LongHaulers #COVID #BrainFog #Dysautonomia #Tachycardia

For sure it'll start part-time and fully remote, to accommodate for frequent periods of rest lying down, flexible working hours, and avoid draining energy through commuting, noise, interruptions.

I'm hoping to focus on current trainees and not much else at first.

Any other ideas on how to organize one's day, what tasks to prioritize, changes to make to usual work environment and way of doing things? #pwME #longHaulers #MECFS #academia

2/2

As energy is building back up and brain fog is slowly lifting, I'm starting to think seriously about what going back to work could look like.

I've read a few things, and talked with one colleague who's still recovering from #longCovid, but I'd love to hear more from #longHaulers or #pwME in #academia about their return to work. If you read (or have written) testimonies along those lines, please send them my way!

1/2

RT @Dr4OurNHS@twitter.com

@YouAreLobbyLud@twitter.com It is time to push for #COVID19 compensation else we will continue to be ignored
#SARSCoV2 #COVIDisAirborne #LongCovid #LongCovidkids #LongHaulers #SafeEdForAll #SafeSchools #MicroClots #MaskUp
https://twitter.com/Dr4OurNHS/status/1525421528149532674

🐦🔗: https://twitter.com/Dr4OurNHS/status/1616297219153338369

Dit is een grote en enorm belangrijke stap. We doen alsof de pandemie voorbij is of dat het krijgen van covid helemaal zo erg nog niet is of hoeft te zijn. Maar je wil echt echt echt geen long covid krijgen en hoeveel risico je loopt om dat wél te krijgen (en wat dan te doen) wordt dankzij inzet van 'the' disability community en onderzoekers steeds duidelijker en duidelijker.
https://www.nature.com/articles/s41579-022-00846-2
#LongCovid #LongHaulers #corona #covid19

Question to my #LongHaulers. Have any of you developed intolerance to alcohol? I've been keeping a diary of my #LongCovid symptoms & one that really stands out is alcohol intolerance. If I have even a bit of wine & I'm down for the next few days. This sucks, as I use to love wine. Just wondering if anyone else was experiencing this.
#Covid #Covid19

RT @RepPressley@twitter.com

We've made some progress in the fight against #LongCOVID, but too many are still suffering.

Policymakers have a moral obligation to provide our #LongHaulers with the support they need, and I won’t stop fighting.
https://www.nationaljournal.com/s/719983/long-covid-sidelined-in-congress/?unlock=2CDDWZ063QN1MRQI

🐦🔗: https://twitter.com/RepPressley/status/1612162351398002691

#covidstudies #longcovid #longhaulers #longhaulcovid #covidtransmission #oculartransmission #N95s

@JenMc I know that feeling! I’ve been sick for 30 years now. It does get very lonely and dragging. But there are are lot of us out here.
##ChronicIllness #InvisibleDisability #MECFS #LongHaulers

Do any of you #longcovid #longhaulers have #kidneydisease now after your #covid infection? If so, can you tell me what you’re doing to help your #kidneys heal that isn’t #dialysis ? Happy to share what I’ve been doing too, if anyone is interested in my personal research. 🙏

My QC say, strict 4 week global prepared lockdowns every 3 month and after that again live as usual without masks or sanctioned distancing 24/7 repeated until we find a cure for the #longhaulers might be the only way out, could that work?

Wait for Vaccines that might not work and duck and cover will proably harm more and not work.