#Long-Covid

[rhube]

I did it. I wrote my very angry letter to my MP.

Today I had to deal with my lettings agent emailing to say she refuses to wear a mask when she enters my house, even though I'm medically vulnerable, and then an email from Action for ME that triggered me for other reasons.

I decided to use my distress today for good.

I do not expect anything to come of it, but it is the ONLY thing I can do, so I did it.

Please consider writing to your representatives to ask for protections for the disabled and chronically ill in this ongoing mass-disabling event. At the very least in healthcare settings and when people enter our homes we should have the right to ask them to mask.

In the UK, you can use WriteToThem to find your representatives:

I wrote a long letter, but even a short note to say you think medically vulnerable people need more protections in the on-going pandemic, would make a huge difference.

I shared some pretty personal info, so I'm not putting my text up online, but here are a few things you can draw on.

I quoted this article in the Scientific American, which contains a transcript of an interview with Maria Van Kerkhove, interim director of the WHO’s Department of Epidemic and Pandemic Preparedness and Prevention:

Specifically, these bits:

Although the WHO declared an end to the COVID public health emergency in May 2023, the organization has emphasized that the pandemic isn’t over…

If we look at wastewater estimates, the actual circulation [of SARS-CoV-2] is somewhere between two and 20 times higher than what’s actually being reported by countries. The virus is rampant. We’re still in a pandemic. There’s a lot of complacency at the individual level, and more concerning to me is that at the government level… The misinformation and disinformation that’s out there is hampering the ability to mount an effective response…

The COVID pandemic was not normal. This amount of death is not normal. It didn’t have to be this way.

If you can, talk about how it's impacted you (again, not necessary if you don't have spoons/it would be triggering). Amongst other things, I talked about:

my dentist angrily refusing to mask in a situation where I can't mask

my lettings' agent refusing to mask when entering my home

that I am not recovered from COVID 4 years on

that I had to stop working where previously I worked full-time despite my chronic illness

how traumatic it is applying for PIP

how traumatic it was to listen to eugenics daily from colleagues, friends, and family, because of government misinformation (see the WHO article for support on governments being to blame for this)

how I haven't been eligible for vaccines for years, despite having a condition that compromises my immune system

that we're in the middle of a mass-disabling event

I asked for, and recommend that you ask for:

mandatory masking in healthcare settings

mandatory masking for people entering the homes of medically vulnerable people as part of their jobs (where the vulnerable person cannot refuse)*

free vaccines for everyone on the NHS

I don't expect to get these things - Labour won't do anything the Tories won't do, and the Tories will never do this. But we have to ask. And we have to ask for what we want - if we don't get all of it, we may get some. Just the right to ask that medical staff mask would be huge.

*if possible, emphasise that you can be vulnerable without being extremely vulnerable, and this group of people has been wholly unprotected.

#covid #covid-19 #long-covid #mecfs #uk politics #write to them

[terraoliveira]

two & a half years into the pandemic, wildfire smoke thickens the air, every year growing dark & more westward, our breathing shorter & hardened. capital consumes the quality of sky, & day after day, more of us enter the fog — heavy as metal — our bodies turned hot in the crucible, chests fluttering, airways tightening. you are so young & healthy, the doctors tell me. your tests have all come back normal. you have so much ahead of you. i sit in front of them, gasping for air.

Long-COVID (Seattle, 2022) by Terra Oliveira, published in The Rising Phoenix Review

#poetry #original #long-covid #rising phoenix review #poets on tumblr #writers on tumblr #capitalism #climate change #environmentalism

[alighted-willow]

As the seasons change and the weather gets colder, I must ask; Spoonies, how're we feelin’?

#Tired. #Spoonies #I used to love fall and winter so much T-T #Brain Mush Season #Actually Disabled #chronic illness #chronic fatigue #long-covid

[phoenixsavant]

A Strange Year

I know, I abandoned everyone and everything I was working on here. I kind of had to, and it has paid off. (Super long post!) Continue reading Untitled

View On WordPress

#career goals #Half-Life of a Soul #hobbies #life #long-covid #Mental Health #music #Poetry #recovery #updates #writing

[redshift-13]

Despite what Biden, the man from Neoliblandia, said, the end of COVID is nowhere in sight.

One of the people I admire most in the world right now is Laura Miers, whose twitter feed is, for me, the best chronicle of the COVID disaster available.

COVID ages you, some more than others.  Miers looks like, and also suggests herself, that she jumped from her 30s to her 50s or beyond.

Meanwhile, the world appears to be walking into an avoidable disaster:

https://twitter.com/profmiketoole/status/1614724929953607680

#covid #public health #long-covid #mass irrationality

[toshootforthestars]

(source)

#covid 19 #coronavirus #news #science #please get vaccinated #please get the booster #please stay safe #covid is not over #covid is not a hoax #please look out for each other #covid--19 #long covid #yes the covid vaccine is safe

[reasonandempathy]

Researchers have discovered that leaky blood vessels, together with a hyperactive immune system may be the underlying cause of brain fog in people with long covid. They suggest their discovery is important for the understanding of brain fog and cognitive decline – difficulty with thinking, memory or concentration – seen in some people with the condition. It is hoped the findings will help with the development of treatments in the future.

To Summarize:

Long Covid sufferers experience symptoms like forgetfulness and concentration issues due to leakiness in brain blood vessels, according to research findings.

Scientists from Trinity College Dublin and FutureNeuro confirm that Long Covid patients with brain fog have disrupted blood vessels in their brains, making the neurological symptoms measurable.

Blood vessel leakage in the brain, along with an overactive immune system, may be the key drivers of brain fog in Long Covid patients, leading to potential changes in understanding and treating post-viral conditions.

I can't find a single right-wing news source covering this.

#covid #long covid #pandemic #medicine #original content

[capricorn-0mnikorn]

Full Transcript at the link; 3-minute listen.

Quote:

By taking biopsies from long COVID patients before and after exercising, scientists in the Netherlands constructed a startling picture of widespread abnormalities in muscle tissue that may explain this severe reaction to physical activity.

Among the most striking findings were clear signs that the cellular power plants, the mitochondria, are compromised and the tissue starved for energy.

"We saw this immediately and it's very profound," says Braeden Charlton, one of the study's authors at Vrije University in Amsterdam.

The tissue samples from long COVID patients also revealed severe muscle damage, a disturbed immune response, and a buildup of microclots.

"This is a very real disease," says Charlton. "We see this at basically every parameter that we measure."

#NPR morning edition #long covid #me/cfs #health news

[stephenist]

Source

CDC Wastewater Viral Activity Monitoring

BreatheTeq

#mask up #covid19 #covid 19 #long covid #wear a mask #coronavirus #covid

[liminalweirdo]

ARIA - Airborne Risk Indoor Assessment tool

ARIA is an online tool that enables users and building managers to assess the risk of SARS-COV-2 (COVID-19) airborne transmission in residential, public, and healthcare settings. The aim is to inform decisions that can significantly reduce the risk of transmission.

use the tool

#aria #long-covid #resource #airborne risk assessment

[feminist-space]

World Health Organization

MEDIA ADVISORY

NEW: COVID19 variant of interest JN.1

Geneva, 19 December 2023 -- Due to its rapidly increasing spread, WHO is classifying the variant JN.1 as a separate variant of interest (VOl) from the parent lineage BA.2.86. It was previously classified as VOl as part of BA.2.86 sublineages.

WHO advises people to take measures to prevent infections and severe disease using all available tools. These include:

-Wear a mask when in crowded, enclosed, or poorly ventilated areas, and keep a safe distance from others, as feasible

-Improve ventilation

-Practise respiratory etiquette - covering coughs and sneezes

-Clean your hands regularly

-Stay up to date with vaccinations against COVID-19 and influenza, especially if you are at high risk for severe disease

-Stay home if you are sick

-Get tested if you have symptoms, or if you might have been exposed to someone with COVID-19 or influenza

For health workers and health facilities, WHO advises:

-Universal masking in health facilities, as well as appropriate masking, respirators and other PPE for health workers caring for suspected and confirmed COVID-19 patients.

-Improve ventilation in health facilities

Image also has alt text embedded.

#WHO #health advisory #December 2023 #pandemic is not over #covid #rsv #flu #please wear a mask #wear a mask #long covid #masks #ppe #n95 masks

[youngks-smile]

What I Want You To Know About Long COVID

Well lads, I've been suffering from Long COVID for over a year now. My life is at a complete standstill. I'm 25 years old and I'm too sick to go back to school, I can't work, I had to move back in with my parents and I'm still stuck here.

Here are just a few things I wish people knew about Long COVID, including things I didn't know myself until I got it.

COVID destroys your immune system. Yes, even if you don't have Long COVID. Are you getting sick more often now? When you get sick, does it last longer? There are many studies showing that COVID causes t cell depletion, even in mild COVID cases! T cells are how your body remembers how to fight off infections you've had before so losing those cells? Bad news.

Your initial infection can be mild and you can still get Long COVID. Right from Yale Medicine, "Most people with Long COVID had mild acute COVID." (This is also a good link for a basic Long COVID overview).

There can be a gap of time between when you "get better" from the initial COVID infection to the onset of Long COVID symptoms. Some people get sick with an initial COVID infection and never get better. Some get better and then weeks or months later start developing Long COVID symptoms. Long COVID symptoms can even fluctuate over time, can go away for months and then suddenly come back.

So many people have Long COVID and don't realize it. Do you feel more tired lately but no matter how much you sleep, nothing helps? Is it harder to concentrate at work or school? Can you just not think like you used to? You could have Long COVID and not even know it. Even mild post-COVID symptoms are still Long COVID.

COVID can do anything to your body. Long COVID has over 200 recognized symptoms and can affect basically any part or system of your body. There is no one mechanism or cause of Long COVID which unfortunately also means there's no one cure either.

The effects of COVID are cumulative. Each COVID reinfection increases your chances of developing Long COVID. COVID is also affecting your body in other ways, yes, even if you're otherwise young and healthy! "Repeat COVID-19 infections increase risk of organ failure, death".

Once you have Long COVID, repeat COVID infections will make your symptoms worse. "80% [of Long COVID patients] saw their symptoms worsen [from reinfection]. In 60% of people who were in recovery or remission from Long COVID, reinfection caused a recurrence of Long COVID."

There is a lot more I want to say about Long COVID but I want to keep this post at least somewhat manageable to read. Like how when COVID is contracted during pregnancy, those COVID-exposed fetuses have a 6.3-fold increased risk of motor developmental delays, or that another study found 50% of babies exposed to COVID in utero had developmental delays.

You need to keep caring about COVID, for others around you and also for yourself even if you're "healthy". Everyone is at risk. And don't forget 40-60% of COVID infections are asymptomatic, which is why masking even if you feel fine is crucial. The only way right now to not get Long COVID is to not get COVID in the first place. It's not too late, if you've stopped masking it's never too late to start again! I know it's easy to get distracted by things in your life that seem more real than the possibility of getting sick some time in the future, and the peer pressure to not mask can be intense. But it only feels less real or less important until your entire life is having Long COVID. Trust me.

I know this is a complicated issue, many people can't afford to stay home when sick even if they want to because of their jobs, there are disgusting policies trying to ban wearing masks, but please if you can. Keep masking. Masking works, masking saves lives.

This post got a bit longer than I wanted so below the cut is a non-exhaustive list of my Long COVID symptoms and some of my experiences as one of the "healthy young people" who got "unlucky". cw brief mention of suicidal ideation.

Welcome to the Thunderdome that is my body with Long COVID. Keep in mind these are just my experiences and symptoms, Long COVID can cause any range of symptoms at varying severities.

Dysautonomia: Exercise intolerance, Post-Exertional Malaise (PEM), fatigue, and heat intolerance. What do those things mean? Here's some specific examples. Absolutely terrible circulation I am so cold all the time but also, if I get a little too warm I will pass out. Eating hot food makes my heart rate spike, I sweat, my body feels heavy. Blood pooling and pins and needles in my feet when I walk. Don't even think about exercising past walking, it's impossible. I used to work out an hour a day 4 times a week and now walking up one flight of stairs makes my heart pound and I can't breathe. Can't take even just warm showers anymore or I will pass out. Heat rashes from being in the sun for 10 minutes.

Digestive issues: Honestly too many to name but: constant bloating, extreme nausea, constipation, slow motility, lack of appetite, just so much cramping and pain. I lost 18 pounds from Long COVID, as someone who was already considered underweight their entire life, and almost had to get a shunt put into my chest to deliver nutrients because I was nearly completely unable to eat. For the first 6 months of Long COVID, if I could manage 600 calories a day, that was a good day.

Histamine intolerance: Oh boy. My worst symptoms, I don't even know where to start with it. If you know Mast Cell Activation Syndrome (MCAS) it's very similar. I can only eat 19 foods. If i eat a single bite of something not on that list, it's 48 hours of absolute hell. Coughing, migraines, itchy eyes, such extreme nausea I cannot even describe it, panic/feeling of doom, racing heart rate, derealization, rash, uncontrollable muscle tremors. I only learned about histamine intolerance 5 months into having Long COVID so before that, I was experiencing these symptoms nearly every single day. Terrifying isn't even a strong enough word to describe how it felt to experience all this and have no idea what it was, how to stop it, or if it would ever stop. Really dark times.

Neurological issues: More of that derealization. Inability to concentrate. Anxiety. OCD-like symptoms such as thoughts getting "stuck" in my head, repeating 24/7 completely unable to stop them, genuinely felt like my brain had cracked open and I had lost my mind. Constant dizziness like I'm on a boat.

Sleep issues: I sleep like garbage. I have insomnia, I wake up dozens of times every night and every single time I sleep I have intensely vivid dreams. I can't sleep longer than 7 hours total no matter how exhausted I am. It is exhausting. I'm exhausted, I'm so so tired.

And finally. Just. Really intense suicidal ideation. My body, my health, my entire life has been stolen from me because someone else decided my life was worth less to them than wearing a mask or staying home if they feel sick. Before I got Long COVID, I was preparing to go to South Korea to teach English, then on to a PhD in neurolinguistics, I was supposed to meet my long distance partner and had already booked plane tickets when I got sick. All of that has been destroyed.

Most of us with Long COVID are stuck in a cycle of being extremely sick, then if you're lucky you'll slowly get better over months, just to get reinfected and go right back where you started or worse. Honestly, I'm not scared of dying from COVID. I'm scared of living for a long time, suffering from Long COVID the entire time. This isn't living.

I don't know how to end this now. I'm still fighting, I'm trying experimental treatments, I'm not giving up yet. I hope everyone reading this stays healthy and well.

#long covid #covid 19 #covid isn't over #pandemic

[alighted-willow]

Hi, hi, hi, pause for a moment.

If you take Adderall and its effects are completely undependable, try taking it on an empty stomach. Don’t eat for the two hours before nor the hour after; empty stomach.

I take extended release Adderall for parasomnias caused by Long-Covid (which basically translates to “My brain doesn’t sleep when I do, I'm exhausted during the day, and I feel physical pain in my dreams). I'm also an ADHDer and autistic, so when the Long-Covid acts up everything else does too.

I kept asking professionals about how to get my meds to work regularly and with some degree of dependability. None of the people I asked really knew, which meant I had to figure it out via trial and error and my own research. To save any others the hassle, we're running through the list of highlights:

If you have digestive problems, your gut's probably pretty acidic; Adderall cannot absorb in an acidic system so drink a ton of water, don't eat anything processed (breads, cheeses, etcetera), and preferably take the meds on an empty stomach.

Don't eat fruit nor vegetables around when you take your meds. Nearly everything has vitamin C (citric acid) in it.

Don't eat dairy products other than milk around when you take your meds; a kind of acid (normally from the stomach) is added to culture the milk into butter, cheese, and all else.

If you have a menstrual cycle, your hormones will effect absorption. Not much you can do there. It might not adsorb at all during blood week, it absorb ten times more strongly during ovulation, you might want to keep track of that sort of thing.

Caffeine can exacerbate the effects of Adderall, meaning that if it doesn’t absorb on a day when you really meed it to… you can consume something caffeinated to try and bring it up as needed. Not suggested but sometimes helpful.

Others please add on.

#Adderall #stimulant #Adderall XR #Adderall Absorption #ADHD #Actually ADHD #Long-Covid #Long Covid #brain fog #cognitive dysfunction #parasomniac #parasomnia #actually parasomnic #parasomnic #neurodivergent #actually neurodivergent #narcolepsy #narcoleptic #I want this to show up on the dash of those for whom it can be helpful

[charliejaneanders]

The United States has always been a terrible place to be sick and disabled. Ableism is baked into our myths of bootstrapping and self-reliance, in which health is virtue and illness is degeneracy. It is long past time for a bedrock shift, for all of us.

Long covid has derailed my life. Make no mistake: It could yours, too.

#covid #quotes #writing #long covid #madeline miller #holy shit this article is devastating #please keep masking and testing

[nattohero]

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#Nattonkinaise #Vaccine Recovery Formula #Spike Support #Natto #Blood Thinner #Fibrinolytic #may maintain a healthy immune system #Probiotic #Anti-Clotting #Long- haul #Long-Covid #nutrition #health

[16woodsequ]

#covid recovery is taking a long time y'all #writing #writing meme #fanfic #brain fog #fanfic meme #fanfiction