Tonight, millions of #Longhaulers were hoping that @POTUS would become a champion for #LongCovid by utilizing his platform to create more awareness & educate the American people about the sheer devastation Long Covid has caused & will continue to cause for decades. He didn't.
1/
We hoped @potus would continue to emphasize mitigation efforts being essential in our battle against #COVID19 & #LongCovid. Instead, Americans were told they could remove their masks as we move back towards a "safer normal" & that those vaccinated & boosted are protected.

2/
For #Longhaulers, there is no "return to normal." We also know that people can still get infected with #COVID19 even if vaccinated. While vaccination helps prevent severe disease during acute infection, we KNOW that #LongCovid most commonly occurs in mild-moderate cases.
3/
Long Covid has also been documented to occur after asymptomatic infections at rates as high as 32% in one study out of CA. This is why it is essential to continue to "stack" our mitigation efforts & stop dangerous messaging that can lead to lifelong disability for millions.
4/
Throughout the entire #pandemic, there has been ZERO public messagine about #LongCovid, its dangers & impacts or its prevalence. This information alone could potentially change behaviors to help us better mitigate the pandemic in general & better prevent disability from LC.
5/
Instead @POTUS decided to completly ignore this mass disabling event, permanently removing people from the workforce & school, contributing to billions of dollars in debt for #Longhaulers, roadblocks to assistance, & complete disregard for pandemic precautions that save lives.
6/
@Potus, if you cannot even mention the words #LongCovid, how can we count on you to take action to help 8-33 million #Longhaulers in the U.S. alone? How can you tell us you value first responders & HCW's, educators & single parents when you are willing to count us as a loss?
7/
We are not expendable. Lax mitigation efforts in exchange for a return to "normalcy," that in reality, actually prevent the return to normalcy, create more disability, & accumulate greater costs for all, for decades to come & cripples the medical system even more so than now.
8/
We are people. We are sons & daughters, mothers & fathers, neighbors, front line workers, & your childs teachers. We are the people who one day got sick & never got better, who had bright futures & families & now, we are a shadow of the person we used to be.
9/
@POTUS we need immediate action to assist the #LongCovid community, but you cannot begin to help us until you publicly acknowledge #LongCovid & implement LC Assistance Programs & a LC Task Force & work w/ the LC community to do so. #PRIORITIZELONGCOVID bit.ly/LCComReq
End
For everyone looking to follow long COVID, please follow us! Looking to grow to reach more and more people as we kick off efforts like this!
Thank you so much to everyone supporting this response and our efforts. Your support and RT’s help raise awareness and brings more help and much needed connections to make things happen.

#keepitgoing #followus

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More from @C19LH_Advocacy

Feb 28
Please check out our piece on @NBCNightlyNews tonight!

Awareness & education are key in propelling the #LongCovid & #chronicillness community forward. #Longhaulers in the millions are being failed in healthcare & social supports.

Options have run out. #LongCovidActionNow
1/5
We want to thank @NBCNightlyNews @CynthiaMcFadden & @KitRamgopal for highlighting the struggle #longhaulers face trying to access benefits.

We hope to see @POTUS address the devastation of #LongCovid in the upcoming #SOTU address & take immediate action to help millions.
2/5
Our founder & president (featured in the story @K_Bishof ) can be reached at admin@Longhauler-Advocacy.org or you may check out & contact us through our website longhauler-advocacy.org or on Facebook facebook.com/groups/c19lap/
3/5
Read 5 tweets
Jan 27
We want to thank MN Governor @GovTimWalz for his latest supplemental budget recommendations which include approximately $3 million per year to establish a permanent state office for #LongCOVID!

🧵1/
We are unsure if this is a result of a request we and 2 other orgs sent a few months ago, but we are eager to collaboratively work together on this and help educate those who will be involved, once this budget is approved and the program is in place.

2/
In order for it to go into effect, the Minnesota state legislature must pass an authorizing bill and appropriate money during it's 2022 legislative session,which runs from January 31 to May 23.

PLEASE CONTACT YOUR MN LAWMAKERS URGING THEM TO SUPPORT AND PASS THIS!

2/
Read 7 tweets
Nov 17, 2021
For those who asked, this study is accepting those hot local to Miami whether you are still in Fl or are willing to travel to participate
(see parts 2-5 for more info)
Mention my name when reaching out (Karyn).
1/5
#FBLC #LONGCOVID #LONGHAULER #PASC #RESEARCH #STUDY #UofMiami
For those new to this. This is my myocarditis doc at university of Miami doing this study.
-Covid attacks our endothelium, which we have in every aspect of our body. We complain of blood pooling, bad veins, easy brushing, poor circulation, hr and bp issues.
2/5
A lot of this is likely from endothelial dysfunction which I believe *may* be the trigger of pots or dysautonomia in many of us.
- I only grew 1 of 6 tubes back showing endothelial dysfunction.
3/5
Read 5 tweets

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