How to explain the level of pain, anguish, frustration, & anger #LongCovid patients are experiencing? I am not up to doing it justice. But I'll try. Grifters who don't have our disease being appointed to government advisory committees. Some of them have abused, trolled, & lied /1 about LC patients. Others minimized our disease as nothing new, a "political identity," & still others are acting on behalf of orgs that have done nothing in decades for the patients they claim to champion (not LC). Enraging. Bad actors co-opting LC, to erase it, rename it. /3

I started my NYE at what a beloved friend calls the butt crack of dawn (you know who you are) watching the submission from a #LongCovid patient sharing their lived experience from terrifying acute infection, through being mocked & abandoned by family, gaslit & dismissed by the /1 "medical profession," & finding other LC patients, building community with horrifically ill people even before our disease was named, & detailing the progression of the disease over years. While my husband slept, I listened & watched & wept. We had been infected with a novel /2

I wonder how many people who are celebrating the various holidays this week have any idea or, if they do know, care about the loneliness & pain of those who are sick, disabled, alone, or languishing in hospitals where multiple potentially life-ending viruses are freely /1 circulating & timely, meaningful care is in short supply? Abandonment, neglect, disrespect, & cruelty are, however, not in short supply. I'm not seeing care & concern & kindness outside of my #LongCovid community here, where we look out for each other. /2

I am angry tonight. My #LongCovid friends are suffering so much. The American patients have the added burden of fear of authoritarianism, now, knowing what that is likely to mean for them. My rage at those who abandoned us while they threw off all precautions, allowing forward /1 transmission to lead to endless mutations & infections, disabling & killing millions more so they could "party on, Garth," is incandescent. Their amoral choices condemned us to being shut away because it is unsafe to be among them. /2

Psst. You don't want #LongCovid. Not for yourself, your kids/grandkids, family, friends, colleagues, community. My most ardent troll (a person without LC, which is significant) once sneeringly called me a "1st Wave Purist" which is absolute B.S. My LC friends are in trouble. /1 Many are not from the 1st wave. Strokes, heart attacks, vascular issues, loss of eyesight, G/I horrors, inability to eat more than a few foods or tolerate meds, early onset dementia, cognitive issues of all kinds, POTS, Dysautonomia. I could go on. And guess what? /2

When your doctor has diagnosed you with #LongCovid, admitting there are no approved treatments to offer you, when your pharmacist worries about you as a #LongCovid, disabled/homebound patient & can't help you, but your own family disbelieves you it hurts. A lot. /1 When they also fail to tell your entire extended family that your husband/caretaker for over 4 years has had a heart attack & that you, a disabled patient, are all alone (or they did but none of them cared enough to reach out) it hurts. When they turn your disability against /2

I'm tired. I was infected in March 2020. I have #LongCovid & I am sick & dying of #CAIDS. My husband & I built the despite my massive cognitive impairments. He had a heart attack in March & is still recovering. We are now working on a project to share /2covidtoolbox.com & preserve first-person stories of #pwLC. It is a lot & complicated but the clock is ticking. It would be helpful if the rest of you would at least slap a respirator on your faces & demand masking in HC settings so he doesn't get re-infected when he sees his cardiologist soon. /2

Remember the hundreds of times I told you "You don't want this. Not for you, your kids, your grandkids, your colleagues, your community?" I & many others warned you that the decline was turbo-charged, that we lived in our bodies & we KNEW we were dying. How we literally /1

https://twitter.com/DebHolloway/status/1830717888636035497

begged you to embrace mitigations to be safe but also to DO something to force your governments, public health, school boards, & all of those in power to shut down forward transmission, prevent the potential for variants to develop, spread, & evade vaccines that were woefully /2

I'm exhausted. Watching people coming home from the DNC, Olympics, & other super spreader events like concerts, testing positive & proudly posting their tests with "it was worth it!" with no thought about who they infected, who will be disabled, or die because of their /1 recklessness & narcissism makes me despair. I have been despairing for four+ years about people holding FamilyTraditions™ more dear than the health & lives of their own family. I'm exhausted. I tried to warn. So did other #LongCovid patients. But it seems clear to me now that /2

I have been open, sharing the truth about #LongCovid since late Spring/early Summer 2020. So were a few others. We were terrified. We were infected with a novel virus & not getting better so we reported what was happening, we warned. For our trouble, we were viciously attacked /1 lied about, & mocked online &, in some case, by our own families & friends. Here's some testimony whether you want to believe it or not. Many, far too many, of us infected early, pre-vaccine are making end of life decisions, living in fear now every day that today /2

Feeling stressed. I need my prescriptions renewed & last year at this time my GP, who had previously been kind, actually said this to me on the phone "So you are still SHELTERING Deborah." I choked back tears because a) he moved his office so far from where I live that my LC /1 symptoms literally preclude me from getting to his office, b) they don't mask & a reinfection could kill me (and now my husband who is recovering from a heart attack,) & c) his choice of words told me he was psychologizing me. I am losing sleep over this. I told him last year /2

Tap. Tap. Tap. Is this thing on? OK, for the hundredth time, a horrendous number of us who were infected & developed #LongCovid did so long before the vaccines. The vaccine issue is a nuanced one, now, especially for LC patients & we understand that better than you know. /1 Screaming at 1st wave Long Covid patients that we were injured by a vaccine that did NOT exist when we developed Long Covid is not only stupid but is transparently an attempt on your part to reassure yourself that not getting vaccinating will keep you out of Long Covid Land. /2

Seems to me that a whole heap of people have become very comfortable with a) people being disabled, b) people losing their homes, livelihoods, savings, & c) people dying of a preventable illness. All of those things disturb me but much of society shrugs & send their kids into /1 unsafe daycares & schools where they are being infected & reinfected, treating & visiting extremely vulnerable patients in hospitals without masking themselves, & hosting family gatherings & academic conferences with no mitigations. Why? Well, they have been lied to by their /2

Decades ago when my late husband & I lived in earthquake country we were always prepared to survive the aftermath. But he used to say that what we needed to be most afraid of was how our neighbours (who were not prepared) would react. They were a serious threat. Since 2020, /1 watching how people reacted to SARS-CoV-2, casually putting their needs/wants ahead of the safety & protection of others, infecting & reinfecting others with no remorse, haunt me. Now that virtually all mitigations have been abandoned & we face another massive threat with H5N1,/2

Likely an undercount but still terrifying. I have #LongCovid & talk to & read the posts from other patients all day, every day. What I am sharing is, of course, anecdotal, not based on a scientific study, but solely on my observations. /1

https://twitter.com/MeetJess/status/1783466822580257113

Some improve, some to the point of getting back to their lives, more or less. But, in my experience, they are few & far between. Many, many more got sick & simply never recovered, even after four plus years. And a horrifying number recount becoming progressively worse over /2

Where SARS-CoV-2 is concerned, I keep wondering why incrementalists are so comfortable with their positions. Our governments knew we were dealing with a BSL-3/4 PATHOGEN, that it as airborne, about viral persistence & the carnage that would result, & asymptomatic spread. /1 They lied about all of it. All of it. Of course we need respirators in indoor settings, clean air, testing for biomarkers, & treatments. The SARS aware & LC communities demanded all of this & still do. But why is that our job? /2

Thinking tonight, with profound sadness, about the vast, vast majority who disbelieved, mocked, & bullied those who were maimed early & who desperately tried to warn about SARS-CoV-2. Even before we had a name for it. Long Covid. Whether your behaviour originated in denial, /1 inability to adapt & make necessary changes to your lives, or outright malice, the pain & moral injury you caused us is nothing compared to the price that you are or will be paying - you, your kids, your family, your community. I have a wise friend who has been saying forever /2

If tomorrow morning's bloodwork results are what everyone is hoping they will be, my husband will be home by late tomorrow following a heart attack that left him with frightening heart damage. No obvious cause/reason/history other than an asymptomatic infection four years ago. /1 #LongCovid isn't just what manifests in the first months after infection, as I have been telling you for years, it is what can develop over time. I continue to BEG you to protect yourself, your kids, your family, your community. SARS-CoV-2 is disabling & killing people. /2

We're living through a global pandemic which makes the following more urgent but should be attended to by everyone, especially those with kids, in any case. Do you have a Will? If not,😲. If so, is it up to date re: beneficiaries, etc.? Have you got a Financial Power of /1 Attorney document?That's important for management of your finances, bills, etc. How about a Health Care Directive that states your preferences re: prolonging your life such as medical treatments (tube feeding, pain management, medication, resuscitation) & what you do NOT want? /2

I am exhausted & probably should be in bed & not posting here. If my beloved husband was here with me he would make sure that happened. He is not. I am a 1st wave #LongCovid patient & he has been my caregiver for 4 years. On Friday, he had a heart attack. He tested negative /1 on a PCR on admission &, had a stent implanted, & is now very vulnerable to a HAI. Not just SARS-Cov-2, but a shit ton of crap floating around our hospitals with almost no infection control. As I posted yesterday, he was safe in isolation because the cardiologist was concerned /2

Dear people in anonymous lurk boxes in Spaces recording what people are sharing, then chopping it up to remove context, & posting it to rile up your sick flying monkeys - cut it out. The minute you post it, your disgusting behaviour is on display for all to see, /1 no matter how many pre-emptive blocks you have in place. Who you tag, who responds, all of it. Hall of Shame awards to the women who did this to a BIPOC woman yesterday, International Women's Day. You're particularly loathsome as you are the same women mercilessly hounding men/ 2