#Long COVID

[marlovestrees]

Long COVID and ME/CFS folks, and disability allies:

I have something you can do in 15 minutes that will be very helpful to those of us with these disabilities!

The Canadian working group putting together recommendations for Post-COVID Condition (PCC) have released some bad recommendations regarding exercise as a treatment for Long COVID and cognitive behavioural therapy (CBT) to treat Post-Exertional Malaise (PEM).

The UK just recently managed to get these recommendations out of the NICE guidelines for ME/CFS, and we should try to prevent them from getting embedded in the Canadian ones for Long COVID.

They have a survey out until Nov. 27 at 11:45pm EST asking for public input. If you can manage it, please fill out the survey explaining why these are both bad recommendations. The survey is open to people internationally, and anyone interested in the topic. Please mark #2 and #8 as "Major Concerns" and provide a sentence or two explaining why (in your own words).

Draft Recommendation #2 - recommends exercise as a treatment for Long COVID, and only briefly mentions the existance of post-exertional malaise (PEM). Given how many people with long COVID meet the diagnostic criteria for ME/CFS, this is entirely backwards. PEM should be evaluated first and regularly thereafter and exercise should only be suggested once everyone is confident that PEM isn't present.

Draft Recommendation #8 - Recommends CBT as a treatment for PEM. This is recommending a psychological treatment for a physical issue, which is inappropriate. It also contributes to the long history of treating the fatigue in ME/CFS as self-inflicted. And is an activity that can also worsen or cause PEM.

The recommendations and links to their evidence charts are inside the survey itself, or you can open the PDF link on the first page and write your answers before copying them into the survey.

Survey:

https://www.research.net/r/CAN-PCCRecommendationCommentPublic

Here's a blog post explaining one person's responses to the survey:

https://thesciencebit.net/2024/11/21/my-submission-on-the-new-canadian-draft-recommendations-for-long-covid/

And here's one on the history of these "treatments" for ME/CFS and why they're based on bad science.

https://mecfsresearchreview.me/2021/01/12/the-expert-testimony-to-nice-that-took-apart-the-case-for-cbt-and-graded-exercise-for-me-cfs/

[shadowthief-101]

I love this hellhole of a site

do u think omegaverse acknowledges covid-19 and the generation of people who permanently lost their sense of smell like how are they all scenting each other now is the omegaverse economy in shambles

[mapsontheweb]

US states with highest levels of Long Covid. The state with the highest rate of long COVID is West Virginia with 10.6 percent of its population having experienced the illness. Other states with high rates of long COVID included Montana, Alabama, North Dakota, Oklahoma, and Wyoming.

[darthteeth]

(^ picture of my draculaura at the top as a bribe)

Im at my wits my parents have still not finalized their divorced yet my deadbeat has bought a new fucking house but getting him to help me or my disabled sister can be like pulling teeth.im tired of explaining myself I'm burned out and suicidal I just want to meet one big mutual 4id goal, I've been taking care her and my own medical bills since 2022(and with help from dnations and friends money)but back then I had hope because I didn't know what long covid is or how serious it can be, I had no idea I HAD long covid I thought I would recover eventually. But I never did, now it's almost 2025 and I wanna shoot myself and get it over it. If you see this please share or dnate and if u want to see my old post check out the link below

TLDR: URGENT MUTUAL 4ID HELP A CHRONICALLY ILL PERSON AND THEIR DISABLED SISTER

529/6000€

I'm so sorry for tagging u guys a million times...

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[natandacat]

Theres no words that can describe the complete alienation of having severe long covid. One infection, caused directly by political decisions to remove public measures, and i cant walk. Can't stand except on really good days which are getting rarer. Sitting is a privilege i dont always have. Cognitive work is too much of a risk to consider for the moment. I live in constant fear of going back to being utterly bed ridden in the sense that i cant even feed myself, drink water, speak, move my limbs beyong my fingers and toes. For days and days without relief.

Nothing feels real. Every gain can be lost in a literal second. And on top of this, the fear of reinfection. The very real possibility of death, given how weak a single infection has made me when I was healthy and young. The even more real possibility of a worsened state, where there are no good days. That means death, too. If i am constantly in a state where I cannot move, i am going to have to resort to euthanasia because it is not a bearable existence. I can barely tolerate it when it know it will end. Last time was 14 days and I am still so traumatized by it 2 months later nothing feels real.

And on top of that, i am being told that my life doesnt matter. Covid is not a real concern. Let it fester. Even if the stairs in my building didnt lock me in, all public spaces have become lethal to me. I cant see my friends because they cant avoid exposure when theres a wave. To love me, you must live in a horrific world where no matter how many precautions you take, no matter how much they ostracize you, you might still cause my death.

Covid is a privileged issue they say. Im not even in the room for it bc i cannot be in the room. You can move your body, youre not afraid of death, you havent lost everything that makes you *you*, but im the privileged one. I cant even emote the way i used to. If i get too excited, too happy, i cant move. I talked to countless people who cant work anymore, are losing their jobs their houses their partners their immigration permits but no. Covid doesnt matter. I dont matter. Everyone cheered when i got covid bc they got to party for new years eve. I hope it was a good party. I will never agree that it was worth my life.

For the past 2 years ive had to share classrooms with students and professors who know everything about my story, who have seen how disabled i am by long covid, who ive begged to mask. They all refuse to mask. And i have to sit there and pretend its not a cosmical level farce that theyre talking about social justice and ethics and just what good people they all are. Not to mention that most of them have revealed themselves to be zionists. I have to sit next to an iof soldier and act as if its ok that she gets to sit in this classroom, except im not even sitting in the room because cases are too high and im too weak to be there physically anyway, so im on zoom. At least i get to remove my earbuds when she speaks so i dont have to think about the atrocities she has committed.

[ocelotrevs]

Another article discussing the cognitive effects of COVID.

I just want to remind people that it’s 2024 and we didn’t “go thru a pandemic” we are “going thru a pandemic” present tense. It is still happening. People are still get sick, still becoming disabled, and still dying. Covid hasn’t gone away and I beg people to not normalize getting sick with it.

[kira-akira]

every time i have to hear the phrase "after the pandemic" or "during covid" the cdc owes me $1000 which will go towards the huge medical bills i have for all the chronic illnesses covid gave me

where do you think covid went? the pandemic is now. covid is now. those "mystery illnesses" going around, those "weird flus" that are making people so sick for weeks that they just can't recover from? extremely high chance it's all covid. covid is everywhere

over 1000 americans are still dying every single week from covid. during peaks of transmission like the winter season we will hit well over 3000 americans dying per week. an estimated 400 million people worldwide have been disabled by long covid and counting, with each reinfection increasing your chances of developing long covid

so everyone please use phrases like "during lockdown", "during mask mandates", "towards the start of the pandemic", or my personal favorite "when anyone pretended to give a shit about disabling and killing other people". or better yet wear a mask so you aren't the one disabling and killing people

the pandemic is now. covid is now.

[emoclone]

people defending healthcare workers who refuse to mask: you have to understand, they had a very terrible pandemic!

me:

[massyworld]

Governments are failing us. Worldwide.

Most people have NO CLUE about the implications of getting covid multiple times. It doesn't matter if you got a mild infection. There's even the case of getting asymptomatic infections as your body silently suffers the accumulating consequences. Governments are not doing their part to mandate public health departments to spread information, AND so many more people are distrustworthy of sources of information that used to be well-trusted for YEARS! We need a total communication overhaul.

The fact is that covid causes organ damage and affects every part of your body. You're rolling the dice each time you catch it. And since there aren't accurate tests available publicly anymore (possibly region-dependent), you can't tell if you caught a regular cold, RSV, influenza, or covid. Covid having the highest transmission should be a clue as to what it usually is that you're catching, though. It's better to be safe than sorry, and to mask in public indoor settings and avoid super crowded places.

I don't think people know what long covid can entail, and that's frightening. IT'S frightening. If you get ME/CFS (Myalgic encephalomyelitis/chronic fatigue syndrome), your body literally progressively loses the ability to bounce back from any exertion. Mitochondrial dysfunction. If you've heard the popular quote "Mitochondria is the powerhouse of the cell", well, what happens when the powerhouse shuts down? You gradually become out of breath from the simplest things. If not out of breath, just total bodily fatigue, as if you did so much more than you just did. I've seen a woman say that 1 single shower knocks her out for 3 days. By the way, this isn't unheard of for SARS viruses. SARS-COV-1 from 2002-2004 caused ME/CFS in people but not as many people heard about it. More and more are getting it every day right now, and their voices are crying out in online spheres.

We need more awareness for this disabling virus that world leaders are subjecting us to. Full stop.

[tyhi]

ID: Simple illustration of a woman wearing a respirator. Text says "I mask because the risk of long Covid is high for everyone." end ID.

[stephenist]

Source

CDC Wastewater Viral Activity Monitoring

BreatheTeq

[purrfurnax]

[post-grammatic-stress]

If you've ever told a person who's had to be bedbound for a period of time that you wish you could "just stay in bed", DO IT.

Stay in bed. For days. But don't get up if someone needs you to, or you get bored, or you get antsy. Don't do anything other than rest. Just lie in your bed, whether you need to get stuff done around the house or socialize or anything else "productive". You'll have to cancel on people, you'll disappoint them, they won't understand.

And if you're thinking, "well, i CAN'T just be in bed. There's stuff that has to be done - I have plans", maybe ask yourself why you assumed a disabled person doesn't have plans or things to do or desires.

[thatonebirdwrites]

This dude has been getting the word out about LongCovid. His articles are fantastic and I recommend all of them. His digging into the research is excellent.

This talk is lovely, and he tackles the impact of Covid in an amusing way.

He digs into the anger and guilt. He's done so much for the community, and this talk digs into his work. Digs into the pain and suffering so many turn a blind eye to.

Thank god for him.

I am exhausted, I am isolated, I am often forgotten by community, I cannot get out on my own anymore. I have an energy-limited disease that often leaves me bedridden.

I understand being exhausted by this, but me and tens of millions of others can't escape it. So we talk about it because we need support. We need resources. We need community, and yet society has essentially abandoned us.

I have LongCovid. It is a nightmare. It has destroyed my mobility, destroyed my immune system, and restarted up chronic conditions that had been in remission.

(Yes, Covid hurts the immune system -- see the link at the end with the database of studies, the sources are in there. T-cells in particular are damaged by Covid, and those are crucial for the immune system.)

LongCovid doesn't really go away. I've had it for over three years.

Covid's ability to restart diseases in remission (even cancer!) is not talked about enough.

One of my close friends died because Covid brought her cancer out of remission; she said to remind everyone that if she dies, it was because of LongCovid. (Again see that link to the sources for the research on how covid does this, I do not have the health to input in all the links directly.)

There are tens of millions of children and adults with LongCovid. And yes, children are impacted in harmful ways.

The denial and abandonment has made an entire generation of immuno-compromised kids, and no one knows yet how that will impact their development. What we do know is that Covid and LongCovid does negatively impact children's bodily systems.

Not masking, not vaccinating, not funding research to fight Covid and LongCovid, not crafting more reliable and accurate covid tests -- all of this is killing and disabling entire generations.

Why is this okay?

Surely people are not okay with mass death and disablement? Surely people are not that uncaring and callous?

And yet I have had people try to rip off my mask. Who gleefully tell me they do not mask and do not care to mask. That goes beyond denial. That is violence. Yes, not everyone is that horribly violent, but the alarming amount of people who are? The alarming amount of people in positions of power like that?

It's anger-inducing but also terrifying.

I get how hard it is to face difficult things. But if we do not face the hard things, we cannot move forward and we end up complacent in eugenics and mass death and disablement.

We can't ever build a better world until we care for one another.

But we cannot care for one another unless we engage in pandemic mitigations like masking, vaccination, air filtration, washing hands, and building better and more accurate tests.

Community cannot happen without these layers of protection.

So when people tell me they don't mask, this is what I hear: "I am either in denial or I do not care about those around me or about my own health."

I'd like to believe people care. I'd like to believe people struggle because of fear and denial rather than being heartless and uncaring.

And yet, people and our government doubled down on denial. Where protections were destroyed. Where funding was taken away. Biden had four years to repair and rebuild the Pandemic Mitigations and Task Forces (Obama had bolstered these so we've regressed.) Instead, Biden choose to adopt Trump's strategy of claiming we won against it, that the pandemic was over. He pushed for policies that favor profits over the health of our communities.

The claim the pandemic is over are lies from our government. The pandemic never ended. Covid still evolves and still infects and still damages multiple body systems. The more you get covid, the higher your chance of LongCovid, which is massively harmful, disabling, and sometimes deadly chronic disease.

We could have fixed this. But instead, our government, our so-called society, choose denial. Why? If you examine what the CDC and Biden's office has says over the last four years, you'll notice a callousness toward disabled people. (Ed Young ripped apart these words in many of his articles too. I dropped articles of others doing the same in my database below, which is searchable.)

We've seen this abandonment before with other diseases, especially ones that impacted communities society doesn't like. People have analyzed and compared the response to AIDS to LongCovid, and showed how the abandonment tactics are used in both.

Nowadays, we fought hard to build up resources to those suffering from AIDS. LongCovid sufferers have no resources. Not yet. We need to galvanize community to fight back against that abandonment.

There is no cure for LongCovid. There is no treatment that reliably works. Most of the so-called LongCovid clinics I've researched engage in often out-dated and proven harmful practices that force us to engage in extensive physical therapy.

Except LongCovid is an energy-limited disease. Exertion means collapse. The more we exert, the harder our body has to work to get oxygen to our cells, and studies (and lived experiences) keep showing that extensive physical therapy makes the disease worse.

So no, we have no resources. There often isn't any groups or services in town that help us.

The so-called "disability services" that exist for disabled populations are underfunded, understaffed, and not trained on layers of protection or on energy-limited diseases. So often such services exacerbate the illness rather than assist it. These services are often inaccessible, especially to us bed-ridden with an energy-limited disease. They also do not offer anything that can help manage the disease. At best they might offer help with cleaning or bathing, but that's about it.

Treatments that actually work for LongCovid does not exist, not in America, and not in most of the world. So again, no resources.

Support groups for people are mostly nonexistent or they are inaccessible. Those too ill to fight for access are left with nothing.

So many have been left to rot in isolation. Many have died alone.

If we don't care for one another, then how will any of us truly survive the horrors?

With Trump back, we cannot trust our government. I'm not convinced we ever could as me and many disabled people had watched (and Ed Young covers in his articles) the government's slow abandonment of entire communities.

I get it. The work is hard. It's very hard to make sense of all this.

I get that many of us are being gaslit by not only those in denial but even by the President of the USA. It hurts and makes it even more difficult to move forward or know what is truth.

But we do know the truth.

We can find that truth.

Love and care illuminates truth.

And love and care requires us to adjust our behaviors. We cannot care for one another unless we change our behaviors.

If we wish to survive the pandemic and fascism and mass abandonment, we must care for one another, and that means engaging in layers of protection.

Layers of protection includes vaccines, N95 (or better) masks, air filtration, improved tests to be more accurate and reliable, and hygienic practices.

This is something People's CDC builds up (a community-led group that analyzes the research and makes the information accessible to us. Who does what the US's CDC does not do anymore.)

This is the People's CDC's excellent guide to safer gatherings.

Yes, this requires work, but if you do these tasks with other people, where the community shares the burdens of these tasks to spread it out, it becomes easier.

This is what accessibility looks like. This is what care and love looks like. This is how we protect ourselves and our communities.

I simply do not have the spoons to input in the research links for my sources, so here is a link to a database I keep updated of research over the years.

I honestly don't know how to convince people to care for one another.

But that's what we desperately need as a society. To stop living in denial about the pandemic (about climate change and rise of fascism too), and to start caring for one another by getting vaccinated, wearing masks, improving air filtration, etc.

Anyway, that's my thoughts.

Be safe. Care for one another. Protect one another. We only have each other.

Seriously excellent and even uplifting talk by Ed Yong. HIGHLY worth your time!

Yong is a Pulitzer-winning science journalist who's written (among other great things) some of the best, well-informed and empathetic coverage of COVID and Long COVID since 2020.

—

I can't highlight any one part; the whole thing is great. But one thought I had was that he shares this important anger that's often present in empathetic, deeply caring people — Terry Pratchett comes to mind, for example. Sagan, Miyazaki and others, in other ways. It's an anger that's difficult to carry and should not be romanticized. But I feel grateful to people like this, who are able to funnel into work that helps others and enriches all of our lives.

[toshootforthestars]

(source)