COVID-19 Longhauler Advocacy Project
@C19LH_Advocacy
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A U.S. based grassroots, patient-led, all-volunteer 501(c)(3) nonprofit organization advancing the understanding of & expediting solutions for #LongCOVID . #FBLC
United States
Joined November 2020
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Last Seen Profiles
Pinned Tweet
@SenSanders
,
@GOPHELP
Chairman, &
@C19LH_Advocacy
, introduce
#SenateResolution590
to recognize March 15th as
#LongCovidAwarenessDay
Press Release:
Resolution:
Get Your Senators Support:
#LongCOVIDAD24
1/4
6
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173
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/
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918
The U.S. Bureau of Labor Statistics has released new data (that we all knew was coming, due to
#LongCOVID
being a
#MassDisablingEvent
)! From 2020-2023, the number of
#disabled
people rapidly rose, now hitting the highest level ever recorded at 34 million disabled people.…
22
359
722
As Long COVID Awareness Day [March 15th] approaches, join
#C19LAP
in raising
#LongCOVIDAwareness
and urging
#Congress
to
#FundLongCOVID
.
Check out our
#LongCOVIDAD24Toolkit
here:
There are *many* opportunities to participate, including urging
@potus
to…
41
191
649
@ImmunologyAAI
WOW! This is why why
#KeepMasksInHealthcare
because what you collect outside, most definitely gets brought in to your patients, many of them the most vulnerable.
10
22
614
Put a mask on you and your children. Don’t risk lifelong chronic illness, disability and/ or death. Every infection increases your risks of
#LongCOVID
.
11
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537
As states throughout the U.S. begin to discontinue mandatory
#masking
in healthcare facilities, they place the most vulnerable populations at enormous risk, in the very places and by the very people, they go to for help. We are urging each State Department of Health, State Health…
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157
501
Today we lost an amazing soul. Heidi was a longhauler struggling and fighting for 13 months from Long COVID. The world doesn’t get what we are going through and facing every single day. Please reach out for help and support or just to talk. We are all here for one another. 🌻
27
77
429
On 8/11, the
@CDCgov
revised
#COVID19
guidance as to “not disrupt daily life." These changes are reckless.
18M+ w/
#LongCOVID
experience significant daily disruptions to life. This revision indicates those casualties are acceptable in exchange for comfort.
#StoptheSpread
🧵 1/7
15
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427
1/18 Today, nearly two years into the COVID-19 Pandemic, we are calling on
@POTUS
,
@Congressdotgov
and the
@WhiteHouse
to immediately create Long Covid Assistance Programs and a Long Covid Task Force.
#LongCOVIDActionNow
#LongCOVID
#DisabilityAwareness
13
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@CDCDirector
Please change the tide and lead by example
@CDCDirector
. You all know the long-term impacts of
#COVID
&
#LongCOVID
, & yourselves just reported an increase in cases. No more of the same.
#MaskUp
#LeadbyExample
2
23
374
@CDCDirector
Not a mask in the room, so how is anyone fighting the most threatening infectious disease circulating through the air atm…
#COVID
12
20
357
Our
#LongCOVID
#Billboards
are live!
If you are near Everett MA, Delray Beach FL (pictured below), Arvada Colorado, or Ft Wayne IN you can go see the billboards in person Friday (today) from 3-6pm, and Saturday and Sunday from 1-3pm. Send us a picture! We have more coming so…
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If you belong to a “
#longcovid
group” & you don’t know what, or are not provided resources for: Dysautonomia, ME/CFS, MCAS, AI Diseases, Fibromyalgia, CTD/ HSD/ EDS & more, & you’re being told these things aren’t related to long COVID, you’re not in a credible long COVID group.
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9
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322
TW: Cancer in Long COVID
“…all patients should be regularly screened for cancer after SARS-CoV-2 infection, as the virus has been shown not only to affect cancer progression but also to induce oncogenesis and cancer recurrence.”
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321
We tried to get a
#billboard
up in
#timesquare
tonight for
#NYE
to raise awareness about
#longcovid
but it was declined 3x and the 4th attempt has been left on “pending review” for days with other ads across country declined as well. We were hoping for a last minute miracle as it…
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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/
2
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268
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!
Check out the current list:
#longhauler
…
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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/
2
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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/
3
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MAJOR NEWS
HHS Awards $45 Million in Grants to Expand Access to Care for People with
#LongCOVID
.
Today, the U.S. Department of Health and Human Services (HHS), through the Agency for Healthcare Research and Quality (AHRQ), announced nine grant awards of $1 million each for up…
5
57
243
One study found that anywhere between 2 to 14 percent of people who get Covid-19 will also develop
#POTS
.
POTS is a disorder of the
#autonomic
nervous system, which regulates the body’s most basic functions, from breathing to heart rate. People with it report dizziness, brain…
8
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238
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/
2
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@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/
2
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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/
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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/
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@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
End
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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/
1
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TY
@RepPressley
for being a consistent supporter of the
#LongCOVID
community! We appreciate all you have done from co-drafting the
#TreatLongCOVIDAct
w/ us, to raising awareness & representing our
#LongCOVIDAD24
shirts for
#LongCOVIDAwarenessDay
& everything in between!
Long COVID is a growing crisis for our communities and we can't leave our
#LongHaulers
behind.
On
#LongCOVID
Awareness Day, I'm calling on Congress to take action to
#TreatLongCOVID
and provide our long-haulers the support and care they deserve.
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473
2K
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Please take 30 seconds to ask your members of congress to support the
#TreatLongCOVIDAct
!
3/4 of the U.S. population has had a
#COVID
infection, and 1 in 5 develop
#LongCOVID
. Tens of millions in the U.S. have
#LongCOVID
and there is no cure. The Bureau of Labor Statistics has…
23
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@CDCDirector
@HHSGov
You must prevent
#COVID
to prevent
#LongCOVID
. Bring back stronger, *credible* science-driven guidelines accounting for Long COVID!
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162
1st (believed)
#LongCOVIDKids
#LongCOVIDBillboard
up from yesterdays launch!
This one is in Everett MA!
#LongCOVID
#COVID
(pics needed -Ft Wayne IN, Arvada CO)
Our
#LongCOVID
#Billboards
are live!
If you are near Everett MA, Delray Beach FL (pictured below), Arvada Colorado, or Ft Wayne IN you can go see the billboards in person Friday (today) from 3-6pm, and Saturday and Sunday from 1-3pm. Send us a picture! We have more coming so…
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1
51
163
We sked the
#LongCOVID
community what sufficient, long-term funding for
#LongCOVID
would mean to them. These are their responses
1/2
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Support the
#TreatLongCOVIDACT
!
~50 million people in the U.S. have Long COVID & ~4 million are out of work because of it. U.S. disability rates have hit 34 million, an all-time high. The Treat Long COVID Act will help provide the framework we need to start moving forward with…
9
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@SenSanders
Ty
@SenSanders
for championing this resolution w/ us to recognize
#LongCOVIDAwarenessDay
!
Your messaging & leadership is essential & monumentally appreciated by the
#LongCOVID
community!
Urge your Senator to support the resolution!
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23
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The first is from the US.
The second is from the UK.
When are we going to acknowledge that
#COVID
is a mass disabling event for which we have no tools to correct? Mass infection & reinfection doesn’t create hybrid or herd immunity, it creates death & disability.
#ActionNow
6
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Today
@RepPressley
,
@TammyDuckworth
,
@DonBeyerVA
,
@RepLBR
, &
@timkaine
unveiled the
#TREATLONGCOVIDACT
! We are proud to have partnered in the crafting of this legislation.
Bill-
Press Conference ft board member,
@netiamccray
-
1/17
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@POTUS
NOT ONE mention of
#LongCOVID
during your brief to the nation on
#Omicron
.
Continuing to overlook the fact that Millions of Americans have been disabled by
#COVID
, have no cure or effective treatments and no forms of assistance to keep them afloat is not helpful.
1/3
4
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135
For the public to make calculated decisions surrounding
#COVID19
they need a foundation on
#LongCOVID
.
1-
#LongCOVID
& associated conditions can last years to a lifetime.
2- We need more experts in ^ fields.
3- Resources & help is unobtainable for most.
#WhatsYourPlan
if 1 in 5?
3
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134
We want to thank
@RepPressley
& her office for listening to us & reviewing our requests. The numerous pleas from the
#LongCovid
community have gone unheard & unanswered for nearly 2 yrs. We are extremly grateful to the lawmakers who are listening to & fighting along side of us.
Folks suffering from Long COVID have been overlooked for too long.
Collecting robust data will help us understand this illness & target resources to those most impacted.
@RepDonBeyer
& I want
@CDCgov
to publicly report this data because that which gets measured gets done.
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124
“Individuals with
#longCOVID
are vulnerable not just to their experience being minimized by headlines parading oversimplified and overreaching conclusions. The desperation for improvement also leaves them vulnerable to individuals marketing deceptive …
10
39
120
@POTUS
The
#pandemic
is still happening.
2,000+ are still dying weekly.
You’ve once again neglected
#LongCOVID
- sure to demolish any “come back.”
Tens of millions have Long COVID.
The 5 year cost at 10% developing long COVID was 3.7T. The prevalence is actually 20% so…
3
42
120
As co-drafters of the
#TREATLongCovidAct
, we are proud to endorse its reintroduction today led by
@RepPressley
,
@RepDonBeyer
&
@RepLBR
!
This bill is aimed at expanding access to
#LongCOVIDtreatment
, investing in
#LongCOVIDClinics
and
#HealthProviders
.
1/
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118
We are happy to announce that we have received a $10,000 grant from Dysautonomia International to support our
#dysautonomia
research, education, and advocacy efforts within the
#LongCOVID
community.
TY
@Dysautonomia
for your cont’d support & guidance.
#DysautonomiaAwarenessMonth
5
19
115
So what are
#Longhaulers
supposed to do when they are all out of money and options. No
#unemployment
, no
#workerscomp
, no
#disability
, no help. Just asking…. We can’t work so we lose everything, go into debt, and just let it spiral?
#HELPUS
#LONGCOVID
#COVID19
@POTUS
6
39
112
The March-April 2020 LH's are by far the largest group of
#Longhaulers
. We continue to see
#LongCOVID
#research
citing only 2,3,6 months of symptoms. We need more reseach +
#awareness
for those over 1yr, almost 2, who are still VERY sick w/ some getting worse w/ time, not better.
The new studies on
#LongCovid
are showing people are still having symptoms 6 months to a year out. As one of the first to get
#Covid19
in early March 2020, I’m ahead of the research and reporting from the future that people are still having symptoms 18 months out!
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16
45
114
If you have tried to access a
#COVID
PCR test lately- how did that go?
Positivity rates are up, and we are seeing anecdotal reporting from the community that PCR tests are few and far between or that their providers are telling them to “just use home testing” which we all know…
19
29
111
Great piece by
@ahandvanish
Long COVID always takes the back seat when it carries the largest impact of the pandemic, which continues to be misunderstood and downplayed. It’s time to recognize QoL & Disability as essential qualities of an illness/disease
1
38
111
We have sent over 2,000 letters to congress asking them to support the
#TreatLongCOVIDAct
thanks to all of you, but we need more!
In 30 seconds, you can help urge your members of congress to support the
#TLCA
!
See who has been contacted here:…
8
59
111
No one is coming to save us. We must band together and force change. We will shortly be putting out a call for more volunteers! Please get involved with your
#longcovid
groups calls to action. We need you!
5
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@CDCDirector
@CDCDirector
Would any one of those priorities be sufficiently addressing
#COVID19
&
#LongCOVID
to prevent mass disability & death? Asking for the tens of millions you have neglected & continue to neglect on a daily basis. You have a duty to act. ACT!
5
22
106
#longhaulers
are NOT suffering from Akathisia, they are suffering from
#Dysautonomia
. This junk science has no place being published.Continued refusal to familiarize yourself with the NOT RARE post viral conditions being seen in
#longcovid
is unacceptable and negligent. 1/11
6
18
104
We are calling on the
@CDCgov
to recognize the long-term, systemic health & socioeconomic impacts caused by the disability faced as a result of
#LongCOVID
& its associated conditions, a result of the initial
#COVID19
infection.
Preventing infection prevents
#LongCOVID
.
2/7
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103
The U.S. has seen over 1 million deaths due to
#COVID19
& 1 in 5 infected develop
#LongCOVID
.
At current *documented* case counts, the U.S. has ~18 million
#Longhaulers
. The
@CDCgov
's own data estimates only 1 in 4 cases are actually documented. (4x as many w/
#LongCOVID
).
3/7
4
35
101
Please join us in asking our members of congress to support several pieces of
#LongCOVID
and
#pandemicpreparedness
legislation, outlined in the action here:
Why is this important for *everyone* to do?
We are in drastic need of
#research
,
#access
to…
1
73
104
#LongCOVID
is incredibly disabling, especially when it triggers secondary conditions like
#POTS
,
#MECFS
#SFN
#MCAS
#FM
and
#AIDiseases
+, all disabling conditions themselves let alone in combination.
We are dramatically, and willfully, misunderstood.
2
49
102
For
#LongCOVIDAwarenessDay
, we ask the
#MedicalCommunity
to watch & listen to the messages the
#LongCOVID
community is sending you. Their responses are raw & highlight the long road ahead to improving patient outcomes.
#LongCOVIDAD24
#C19LAP
#MedTwitter
9
35
89
How many do you experience
#Longhaulers
?
Dr. Artur Fedorowski & colleagues just published the first
#POTS
specific symptom score, based on the 12 most common symptoms reported by thousands of patients in the Big POTS Study.
*It's not just tachycardia.*
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36
99
Researchers identified a 42.6% higher likelihood of acquiring an autoimmune condition 3–15 months after infection compared w/ a non-COVID-19 cohort of 1,560,357 people matched for age, sex & whether they had a preexisting autoimmune disease.
#longCOVID
0
59
97
@jvipondmd
The
@C19LH_Advocacy
is ready to partner w/ public figures who have
#LongCOVID
to start FINALLY getting the public awareness & education going. Despite patients screaming from the rooftops urging the govt to get this going for 2 years, nothing has happened. Now we turn to you! 1/2
5
28
96
Today we celebrate hard work & what is a crucial first step in addressing
#LongCovid
like the mass disabling public health crisis that it is. Up to 32M in the U.S may be suffering from Long Covid w/ little to no help available.
1/4
5
23
91
Where are the public national awareness and education campaigns on
#LongCOVID
from our government? Commercials, billboards, public transit, social media ads, radio, physician office posters, etc! We requested these in our open letter to national leadership in Jan 2022, and have…
4
35
93
@CDCgov
@HHSGov
The only way to prevent
#LongCOVID
is to prevent
#COVID19
. There are almost no tools for that to be done anymore. You can change that and protect public health.
7
13
91
Hey
@POTUS
, it’s
#LongCOVIDAwarenessDay
. Where you at? Asking for… about 66 million people w/
#LongCOVID
.
1
34
86
3/18 The U.S. recently reported a continued increase in unfilled jobs in December 2021, yet nobody is keeping count of the number of Longhaulers who have disappeared from the workforce due to illness. We must no longer remain invisible, uncounted, and forgotten.
2
18
87
Thank you
@SenSanders
again for championing this resolution to recognize
#LongCOVIDAwarenessDay
& all you are doing for the community. Your messaging and leadership is essential and monumentally appreciated.
We cannot ignore the public health crisis that is Long COVID. On Long COVID Awareness Day, let us commit to doing everything we can to address this horrible condition. The U.S. government must do more to increase awareness and provide additional resources to develop treatments.
852
2K
7K
2
19
69
@CDCgov
Months to YEARS to LIFE. Be honest with the public. Also, if 1 in 5 develop long COVID and 3/4 of US pop has had COVID, we are talking 50 million people with
#longcovid
.
2
8
89
2/18 Millions of
#Longhaulers
in the US have been unable to work, without income & suffering financially for over a year. We are also calling on
@NIH
,
@CDCgov
,
@HHSgov
,
@SocialSecurity
,
@CivilRights
,
@US_FDA
&
@PAHOWHO
for
#LongCovidSupport
and to
#CountLongCovid
now.
1
26
85
APPALLED AT THIS STATEMENT BY DR FAUCI.
“When cases are mild or asymptomatic, case counts, whether 10, 20, 40, 50k become much less relevant than whether or not you have a lot of hospitalizations”.
1/3
13
20
87
#LongCOVID
& its
#disability
will continue to "disrupt daily life" for millions of
#Longhaulers
, their families, & their communities.
The
@CDC
's messaging will cost millions more their health & futures, & have decades to generational impacts. Do better.
#StoptheSpread
7/7
1
25
84
If you are here and are not sure what happened *this time*… universal masking at hospitals and nursing homes is now no more thanks to the CDC.
3
18
82
@SolidEvidence
If you are studying viral persistence, this has already been done. I would also encourage you and your team to review this paper on viral persistence found in tissues all over the body over various time frames.
2
14
84
~1 in 5 people infected with
#COVID19
will develop
#LongCOVID
.
You absolutely know someone with
#LongCOVID
, the problem is, they do not feel safe enough around you to talk about it.
We need an investment into public health messaging to destigmatize
#LongCOVID
.
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86
#C19LAP
has received a donation of 2,400 N95 masks! We're donating 10 each to 240
#LongCOVID
households. Sign-up & review the information in the form below to help ensure equitable access to COVID prevention methods.
#MaskWeekofAction
#MaskUp
#Longhauler
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84
The bandaid to chronic illness.
2
21
84
The
@NIH
’s RECOVER Initiative is having a hard time recruiting
#longhaulers
. Many of our members have no site in their state or within 100 miles.
We want to hear from you!
Check sites here.
Is there a site accessible to you? How far away? Comment ⬇️
None in state/ 100 miles
163
Site in state/ 100 miles
119
91
95
83
We need your help getting bipartisan co-sponsors for the
#TREATLongCOVIDAct
! Please help us out by:
1- reviewing the bill
2- check if your Rep or Senator has signed on
3- write your Rep & Senator asking for their support
STEPS ⬇️
1/
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78
#LongCOVIDAwarenessDay
T-Shirts are now available!
- Adults up to 5X AND Youth XS-XL
- Front Print Only OR Front & Back Print
- International Shipping
Order by March 4th to receive by
#LongCOVIDAD24
#LongCOVID
#LongCOVIDAwareness
#FundLongCOVID
#C19LAP
1
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#LongCOVID
patients belong in long covid groups so they have access to educational resources, accurate and up to date information, and support from fellow
#longhaulers
. 1/9
4
10
78
Some of your senators voted to end the pandemic emergency declared in March 2020 & all the protections & preventative measures (free testing, vax, & boosters, etc) that it provided.
@POTUS
announced that he will be vetoing the resolution.
CALL THEM OUT!
List of shame below⬇️
3
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75
#Longhaulers
#LongCovid
community ⬇️⬇️⬇️ please let
@AyannaPressley
know your experience and about our open letter and asks!
Millions of people are suffering long-term health effects of COVID-19, but their experiences are often ignored and overlooked.
If you've been dealing with
#LongCOVID
, what has your experience been? How can policymakers support you?
Share your stories below. ⬇️
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@CDCgov
@CDCMMWR
#LongCOVID
can last years to life.
1) Long COVID can result in death
2) Many conditions such as POTS, MCAS, ME, and more- occur as part of Long COVID. None of which have a cure themselves, therefore being lifelong. 1/2
1
5
74
New CDC
#LONGCOVID
Data.
81% of adults (86.3% btw 18-29) w/ ongoing symptoms of
#COVID
lasting 3 mo or longer are experiencing limitations in their daily activities compared to pre-virus due to
#LongCovid
1/2
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Now Open! An online portal to provide feedback on the U.S. Government (USG) working definition for
#LongCOVID
and related technical terms. The portal will close on June 12th. Participate here:
#Longhauler
#LongCovidAwareness
#FBLC
#LongCOVIDadvocacy
#LCAC
2
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“Karyn Bishof, founder and president of
#C19LAP
, shared that one billboard owner rejected her organization’s design without explaining why. On November 17, 2023, Bishof received an email from Blip explaining that the owner did not want to put up their design because they do not…
I wrote about the
#LongCOVID
billboard campaigns and the potential discrimination some advocates are facing for
@thesicktimes
.
Comments from
@C19LH_Advocacy
@BerlinBuyers
@keetmuise
@DALupton
and others.
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1
27
73
11 months post covid infection. Current diagnoses & symptoms. Tell me again how COVID isn’t real or serious and how wearing a mask and social distancing impedes your freedoms bc I basically have none left due to my health. I am one of MILLIONS of longhaulers dealing with this.
8
10
72
Look at the CDC embrace & encourage masking in schools…FINALLY. Guidelines were just updated!
1
26
72
Our amazing crew has arrived at
#Dysconf2023
! If you are in attendance, make sure to stop by our booth & say hi!
#AutonomicDysfunction
plays a huge role in
#LongCOVID
&
#C19LAP
is happy to be here to learn & excel both
#LongCOVID
&
#Dysautonomia
education!
3
8
69
#LONGCOVID
IS A PUBLIC HEALTH CRISIS!
#Thread
If you have not had a chance to check out & share our
#LongCOVIDAD24
infographics yet, see below or visit .
#LongCOVIDAwarenessDay
#LongCOVIDAD24
#LongCOVID
#C19LAP
#SenateResolution590
1/19
2
34
59
Our current estimate of the annual cost as a result of
#LongCOVID
is $269 Billion!
With over 100,000 cases daily, we will see 20,000
#Longhaulers
(another 8,000 needing SSD), & increase our annual costs by $728 million, per day.
6/7
3
20
69
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
The United States is entering a new normal. Now many Americans are not only living with the effects of long haul covid, but are struggling to qualify for long-term disability.
9
32
63
1
30
68
A couple of weeks ago,
@RepPressley
announced the Treat Long COVID Act. Our newest board member & a local constituent of Rep. Pressley,
@netiamccray
, joined this announcement to celebrate and share her story and what this means for communities like her own.
4
18
64