We're taking
#LongCovid
to Washington DC to demand the attention and response it deserves. You can help us get there, even if you cant make it yourself.
I asked a friend whether someone with COVID should inform everyone they share air with of their positive status. His answer: no.
I asked him if an untreated HIV positive person should inform everyone with whom they are intimate. He said yes.
And there's the disconnect.
My friend had COVID at Thanksgiving while traveling, "a cold" at Christmas, and "another cold" now. I've explained the dangers to her ad nauseam.
My friend is a physician.
@BarbWag69169876
They have found evidence of viral persistencewith COVID. And pay attention to people's immunity; T-cells are becoming messed up for lots of people.
I posted a DETAILED account of my LC journey on FB for Awareness Day. 4 people dm'd me that think they're having long term issues, and 2 said they had family w/bad LC. 7 said they HAD NO IDEA this was a thing!
Earlier posts I'd made re: scientific studies went mostly ignored.
@We_Are_SSD
This is actually my husband's who showed up in town with "a slight cold". I now have "a cold" too but my tests are negative so far. I started Pax anyway.
@stephenleary
@DANOM1GHT
@LauraLoomer
So if it's not long covid then there is a mass conspiracy to remove flavor from your food? But not everyone's food? Yeah that makes total sense.
Well damn. This was the 2nd test (to be sure). Negative chest xray.
I have none of the "usual" risk factors.
Long COVID immune depletion left me vulnerable?
I have a friend who just told me that he only knows 2 other people (besides me) who have had COVID. 🙄🙄And I'm the only person he knows with long COVID.🙄
I'm writing an essay-length reply explaining how things aren't as they seem.
@laurieallee
I've been looking at CDC data on flu tests and positivity rates.
Currently 1% of flu tests administered are positive leaving 99% of "something else"
@MoreauGabarain
@We_Are_SSD
I'm on day 4.5 of symptoms and Pax should be started w/in 5 days. Since I have LC I'm taking maximize my odds of avoiding additional long term sequelae. Or so I hope.
So, anyone in the
#longcovid
/
#pwlc
club have a positive TB test? Or is it just me? Quantiferon gold blood test. No obvious respiratory symptoms. The good news (?) is I'll finally get to see an infectious disease doc🤷♀️
@SendMeeeeee
Lol my gay friends first pointed out the similarities to me. And they are concerned. Im so impressed with your shameless attempts to jidge me without knowing me.
@NukitToBeSure
I'm not sure if this makes a difference for 4C hair havers or anyone else but there are N95s that use coban bandage material for the straps rather than elastic. 2 are Kimberly Clark Kleenguard N95 and ACI N95 Surgical Respirator. These are both duckbill style.
WE WILL NOT BE STOPPED!
People are dying from long COVID.
This affects everyone personally, financially, and in everyone's ability to access healthcare.
Hear this recording & act. LCAP emails from pwLC will stop when the
#CureLongCovid
11 demands are in legislation, when
@JoeBiden
Declares LC a National Emergency 🚨, when LCAP can testify 2HELP, when children receive LCantivirals
@kbr227
#NoCureNoPeace
🆘
My PEM is kicking my arse this week. Whyyyy?
Yes I have PEM AND I support
@LongCovidAP
HEAL initiative because I know how to read and think critically.
#HELPHEALUS
I had a new young woman start helping me around the house today. She had never heard of
#LongCovid
and is fully on board with taking precautions in public! She is my first "conversion"! Only millions more to go!
@jamie_weisman
I'm really struggling with this. I'm so angry with everyone in my life! Friends and family act like I'm the crazy one and not doing enough to heal myself from long covid (with preexisting issues piled on top.)
I'm also angry at their refusal to believe it could happen to them.
"ANTIVIRALS NOW" a new short film directed by
@JoshuaPribanic
on SARS2 viral persistence reveals the destabilizing truth about Long Covid. Scientists,
#pwLC
& activists illustrate how society is threatened by COVID persistence.
Take action 🧵
#LongCovidAwarenessDay
@DrNeenaJha
As a formerly frequent flyer (female if it matters) I had this happen several times. Lots of people with zero regard for others. And I have "accidentally" stepped on their feet before. Passive-aggressive? I prefer to think of it as a strong hint for them to assess their behavior.
@DebHolloway
@BooReals
I was diagnosed with osteoporosis this last Fall. The first thing my bone doctor told me was to do was go to the dentist, stat. She was right. My teeth have become a disaster in a short time.
Vinay Prasad of
@UCSFMedicine
is now lashing out against the tracking of COVID wastewater data, claiming it “foments panic.”
Never seen a healthcare academic so loyal to a deadly and disabling virus before.
@SenSanders
#longCOVID
patients are begging to be heard at the HELP committee mtg without muzzle or filter. We've been overlooked.
Your committee members work for all of us. We are sick and dying, and deserve to be heard. We should not be treated like this.
#ButMyInbox
Hear this recording & act. LCAP emails from pwLC will stop when the
#CureLongCovid
11 demands are in legislation, when
@JoeBiden
Declares LC a National Emergency 🚨, when LCAP can testify 2HELP, when children receive LCantivirals
@kbr227
#NoCureNoPeace
🆘
@chaitrovert
This is flowflex. He claims he tested negative last week with multiple RATs but I dunno how careful he was since I wasnt supervising😆
I'll make him test again later.
I've been wearing an N-95 but still got sick but so far testing negative. Maybe I'll get a PCR for kicks.
@mryoung151
And let's not forget c. Difficile infections can be spread this way too and can also be life-threatening. And hand sanitizer does nothing to stop it. Soap and water, people!
**steps off soapbox**
I'm in charge of my 87 year old father's finances. It's demoralizing to realize how many medical bills I have compared to him.
He had C0v1d once and bounced back like a champ. He offers to run errands for me. So sweet! And so backwards.
In case you weren't sure that the government would rather kill us than do their jobs. Thank you for all your work and for trying to help,
@SolidEvidence
. We see you! 👏👏👏
We developed an assay for testing for H5N1 from wastewater over a year ago. (I wasn't expecting it in milk, but I figured it was going to poke up somewhere.)
However, I was just on a call with the CDC and they are advising us NOT to use it.
I need a drink.
@AlbaDocherty
I'm so sorry Alba. My heart breaks for the children especially. The stress on top of grief for you must be overwhelming. Sending good thoughts your way.
@MarieThereseBka
@ClausErnst
"You're making it worse by being lazy."
"You need to eat a healthier diet" (I eat carefully and am HWP)
"You HAVE to do some exercise even if you feel a little worse"
"I've never heard of ME."
"It can't be that bad."
ME/CFS did not have an ICD diagnostic code until 2022, almost 40 years after it was first described.
Coincidentally Long Covid got an ICD got at the same time in 2022.
I don't believe in coincidences.
Legislation might come too late for some of us, but I'll be damned if I support bills that overlook/minimize the needs of children. The
#longCOVID
bills currently proposed are inadequate for everyone, especially children.
Moonshot legislation can kill children. It’s not 🎯 SARS2 viral persistence,
#LongCovid
is being pushed into IACC, it underfunds what children need to fight LC by upwards of hundreds of billions over the next 10 years, & no child is guaranteed novel antivirals in its language.
I saw my orthopedic surgeon today and in the course of conversation I said "don't get long COVID."
He replied, "I know! 1 in 7 people get it!"
He wasn't wearing a mask.
We're screwed.
I am so frustrated by all my friends and family who give me pitying looks as I continue to warn them and BEG them to mask.
I'm not a conspiracy theorist, I'm exhibit A.
They continue to take risks then act incredulous that I want them to stay away from me. GAH!!!
Western medicine has trained doctors AND patients to only treat symptoms, not root causes. This is not the way.
Example: Headaches might feel the same but one could be a migraine and one a tumor. It's important to distinguish for proper treatment.
This is what happens when you define diseases solely by symptoms and conditions. They suddenly all look the same and are "not new". But, under the hood, the biomarkers are different & persistent pathogens live in different cells and have different effects.
This is why we need to keep Long Covid as a single-focus health issue. Symptoms for MECFS might be able to be treated the same between diseases, but they'll NEVER address the root problem. The best improvement is a CURE, or at least improving the root cause.
🔔 Always ask proponents of the chronic illness trigger theory this question … that they’ll surely ignore but do it.
#LongCOVID
If it’s all just an immune trigger then why do people recover in a multitude of different ways from ME/CFS & other syndromes by treating their various
@JimInhofe
is this how long covid sufferers should be treated? I'm a fellow Tulsa resident (and your neighbor). Patients want a seat at the table. Our voices must be heard. It's too late for many of us but millions more American are being sickened and disabled by
#longCOVID
Hear this recording & act. LCAP emails from pwLC will stop when the
#CureLongCovid
11 demands are in legislation, when
@JoeBiden
Declares LC a National Emergency 🚨, when LCAP can testify 2HELP, when children receive LCantivirals
@kbr227
#NoCureNoPeace
🆘