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fireplace19

fireplace19

What’s the use of burning red hot?
Feb 7, 2021
37
I caught covid in late 2023 and have been so sick ever since. Diagnosed with MCAS, ME, POTS and much more. Spent 7 months in hospital this year and am now just spending 99% of my day in bed fucking miserable.

I don't wanna spend decades doing this. There's no point. It's just endless suffering, watching everyone leave you and live while you'll never be able to.

Anyway, anyone else have these conditions too? Seems like ctb is a huge cause of death with these conditions. Just thought I'd reach out in case anyone was here to talk.
 
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Dot

Dot

Info abt typng styl on prfle.
Sep 26, 2021
3,728
B4 slf stuatn escl8td slf diagnoss ws ME/CFS

Ppl wth ME/CFS hve suicde r8 6-7x highr thn genrl populatn nt only bcse of limitd functnng bt bcse sciety ds nt accommd8 ppl wth CFS -- thre = also stgma & treatmnts whch hve mde symptms wrse bcse of insuffcnt medcl undrstndng of th/ illnss

Slf dscovrd Somatc Xperncng & simlr nuro-sensry treatmnt methds whle lookng fr hlp & whch persnlly helpd t/ mke own symptms bettr

Tht ws ofc b4 th/ slf-imposd triggrs whch mde slf stuatn wrse bt whch r nt commn amng othr suffrrs
 
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U

User111885

I request my username and all posts be deleted.
Jun 22, 2025
556
I caught covid in late 2023 and have been so sick ever since. Diagnosed with MCAS, ME, POTS and much more. Spent 7 months in hospital this year and am now just spending 99% of my day in bed fucking miserable.

I don't wanna spend decades doing this. There's no point. It's just endless suffering, watching everyone leave you and live while you'll never be able to.

Anyway, anyone else have these conditions too? Seems like ctb is a huge cause of death with these conditions. Just thought I'd reach out in case anyone was here to talk.
i somewhat understand. i had what i believe was long covid and it was terrible, but i was starting to get better. but then i got into an accident. i am in a lot of pain all the time.

it sucks. i am so tired of just physical pain and misery. i'm sad and unhappy all the time. and just everything is awful. and i don't feel like i can get better and even if i could, the cost of doing so is so high and my family is so incredibly fucking unsupportive

i have been involuntarily psychiatrically hospitalized and it felt like my family didn't entirely mind my being there and if i started to complain too much about being in pain and wanting to die they would certainly directly or indirectly send me back there... probably indirectly...

"we didn't realize that if we called the police for a welfare check they would hospitalize you like this. it's so awful what trump is doing, we couldn't have predicted this."

if you end up in psychiatry, every fucking nail is a problem solved by the hammer of psych meds that barely do anything except cause horrible shaking, twitching, tiredness, and secondary side effects, and they will ALWAYS say you are doing better when they increase the dosage to justify drugging you more and put it in the notes so that it's documented in a way in which it's incredibly hard to stop when you are involuntarily locked up. psych meds are a horrible hodgepodge of exploitative crap that do barely anything and almost always cause more harm than good.

consequently, there's a limit to how much i can complain. it's some sort of internal injury inside me impacting my spine and neck and no one can find any clear cause, so it's not really being taken seriously.

it's just awful. i'm unhappy and angry all the time, i'm physically in pain all the time, i am limited in how much i can complain about it without being forcibly drugged on psych meds that are unhelpful and terrible.

like is really just a matter of how long i can stomach this pain... and i probably can't stomach it much longer. everyone on this planet is just fucking mean and awful it feels like. this also all takes place in the context of trump's new plans to send a shitload of people with psychiatric issues to institutions and i am terrified of that, having been hospitalized before and finding it excruciating. so as a result of that, i am much more scared of trying to not work, claiming that depression due to pain and other issues is making it hard to work, because i am fearful that they will start doing sweeps of people who get ssi for psychiatric reasons once they create these mental health camps. but i am also very unhappy and have a hard time working because of the pain.
 
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A

Aloneandinpain

Specialist
Dec 25, 2023
375
As I understand it you have a half decent chance of recovery/improvement from those kinds of conditions in the first few years, especially if you're not old.

If you got sick in late 2023 then you still have a good chance of significant improvement
 
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S

sunnyside

Member
Jan 3, 2025
31
Hey just wanted to say I'm in the same boat. Been bedridden for two years now and only getting worse. I know CBT would be the best option to prevent even more suffering but for some reason I can't let go yet
 
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P

PhDone

Experienced
Jul 29, 2024
269
Yep. 2 and a bit years into severe ME. Disgusting illness. Life gone. Sofa bound. No-one, fucking no-one here day in day out. Lost my partner amongst every other loss of this thing. Feel like I'm in a cage. Trapped and no way out. Well, one way out. So yeah, intend to ctb. Would consider MAID but I'm so done and just want gone.
 
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muu

muu

If I was gone, If I had just disappeared
Jul 27, 2025
147
unsure if i have ME/CFS but its very possible, i got covid in september of 2024 and just recently got way way worse. i've had a POTS diagnosis since 2022. i've always had PEM but it's just been getting harder and worse to deal with.

my health is abysmal and plays a huge part in why i want to CTB.

chronic illness is genuine torture and it feels like i'm already in a personalized hell made for me
 
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K

kavina

Member
Aug 26, 2022
34
The US at least has brainwashed people into thinking covid doesn't exist and that they're all safe and it's 2019 again. Covid never ended, this is not a post-Covid world. 1 in 98 people are currently infected and hundreds per week still are dying from covid, and many more are being disabled by the long term effects of it. They just came out with a study showing that Covid awakens "sleeping" cancer cells. It triggers brain damage, dementia, and all the stuff you mentioned like POTS and ME/CFS plus Epstein Barr and others. It's a viper of a disease and no one is even trying to protect themselves or others from it.

There's no real treatment for ME/CFS, either. Doctors dismiss you constantly or call it anxiety. LongCovid, they're even terrified of saying that name! People's anuses clench when they hear the word "Covid" they're so scared of it. Healthcare is completely lost and thinking masks don't do anything, but still put on those useless surgical masks and tons of gloves (like touching a person's clothing will insta-infect them with rabies or something). They're so intensely terrified out of their minds of blood but will suck down your snot day in and day out just fine.

I have POTS and ME/CFS as well but have been masking since 2020 and have never had Covid because you know what, I already HAVE POTS and CFS from other viruses, and I say NO THANK YOU to even more suffering.
 
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qewpie

qewpie

bedbound, bouncing, broken
Aug 3, 2025
159
me but i only been sick 2 months but extremely bedbound
 
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mourningyesterday

mourningyesterday

Member
Apr 30, 2025
49
i suspect i have it & mcas, but cant get gp to test for it, can bearly eat anything anymore becusde of it not sure what caused it for me i had covid a few times but i also was wrongly on antibiotics for long period for cystic acne. this on top of the visual snow syndrome i got is why i want to rope
 
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fireplace19

fireplace19

What’s the use of burning red hot?
Feb 7, 2021
37
Yep. 2 and a bit years into severe ME. Disgusting illness. Life gone. Sofa bound. No-one, fucking no-one here day in day out. Lost my partner amongst every other loss of this thing. Feel like I'm in a cage. Trapped and no way out. Well, one way out. So yeah, intend to ctb. Would consider MAID but I'm so done and just want gone.
Same here. Losing my partner was just the last thing on a long list of things I've lost to this bullshit illness. I don't intend to stay around and lose anything else. My life and legacy are already pathetic as is, don't need it getting any worse. Hugs from me to you.
i suspect i have it & mcas, but cant get gp to test for it, can bearly eat anything anymore becusde of it not sure what caused it for me i had covid a few times but i also was wrongly on antibiotics for long period for cystic acne. this on top of the visual snow syndrome i got is why i want to rope
There's not really a test for it, if you get diagnosed it doesn't do shit. There's no treatment or cure. Barely anyone believes it's even real. I get you, I could barely eat for like 8 months. Eating now but doesn't matter, no point in keeping my meat bag body around for all this nothingness.
me but i only been sick 2 months but extremely bedbound
Hugs. Nobody understands this shit but us.
As I understand it you have a half decent chance of recovery/improvement from those kinds of conditions in the first few years, especially if you're not old.

If you got sick in late 2023 then you still have a good chance of significant improvement
I've likely had it for 10 years but mostly moderate. Now am quite severe, even with all the adaptations and meds. I really don't think there's statistically a good chance for me. I absolutely hate the idea of being around in 10 years, still bedbound, watching everyone and everything I once loved moving on and forgetting me. I'd rather ctb any day of the week.
The US at least has brainwashed people into thinking covid doesn't exist and that they're all safe and it's 2019 again. Covid never ended, this is not a post-Covid world. 1 in 98 people are currently infected and hundreds per week still are dying from covid, and many more are being disabled by the long term effects of it. They just came out with a study showing that Covid awakens "sleeping" cancer cells. It triggers brain damage, dementia, and all the stuff you mentioned like POTS and ME/CFS plus Epstein Barr and others. It's a viper of a disease and no one is even trying to protect themselves or others from it.

There's no real treatment for ME/CFS, either. Doctors dismiss you constantly or call it anxiety. LongCovid, they're even terrified of saying that name! People's anuses clench when they hear the word "Covid" they're so scared of it. Healthcare is completely lost and thinking masks don't do anything, but still put on those useless surgical masks and tons of gloves (like touching a person's clothing will insta-infect them with rabies or something). They're so intensely terrified out of their minds of blood but will suck down your snot day in and day out just fine.

I have POTS and ME/CFS as well but have been masking since 2020 and have never had Covid because you know what, I already HAVE POTS and CFS from other viruses, and I say NO THANK YOU to even more suffering.
Yep. The state of things makes me believe many many more people will come down with long covid before it's ever taken seriously. I don't want to be around to see it. Good on you for avoiding the virus. I was stupid and after 3 years I believed the propaganda that it wasn't serious and it'd be ok. I lost absolutely everything. Many such cases. Stupidest planet and stupidest species ever created.
 
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Life interrupted

Life interrupted

Trapped in life
Mar 18, 2022
143
Yes, me. I had covid in 2021 and I wish it
had killed me. I don't even know what I have now..it could be ME/CFS or something else, but it's not as bad as it was 4 years ago. The reason I want to cbt is now is PTSD and depression plus a reasonable realisation that life is useless
 
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fireplace19

fireplace19

What’s the use of burning red hot?
Feb 7, 2021
37
unsure if i have ME/CFS but its very possible, i got covid in september of 2024 and just recently got way way worse. i've had a POTS diagnosis since 2022. i've always had PEM but it's just been getting harder and worse to deal with.

my health is abysmal and plays a huge part in why i want to CTB.

chronic illness is genuine torture and it feels like i'm already in a personalized hell made for me
It is indeed just pure suffering. I think burning in hell for eternity would be easier than this. PEM is exclusive to MECFS so if you have PEM then that's that. A lot of people will have you believe you don't have it and PEM can come with POTS or whatever. I fell for that too, but it's just because ME is such a terrible diagnosis that nobody wants to have it. So I did the POTS exercise stuff and essentially killed myself already.
Hey just wanted to say I'm in the same boat. Been bedridden for two years now and only getting worse. I know CBT would be the best option to prevent even more suffering but for some reason I can't let go yet
Hugs. 10 years of therapy couldn't save me from the dark pit of hell that is this illness. Nobody can cope their way out of essentially dying while still being alive. Losing absolutely everything to this illness would kill anyone. Oh I just realised you're talking about CTB not CBT hahhaahha. Well, I think it's still hard. There's survival instinct, and there's the fact that we don't actually want to die. We want to live, but we can't. Makes it hard to die.
Yes, me. I had covid in 2021 and I wish it
had killed me. I don't even know what I have now..it could be CFS/ME or something else, but it's not as bad as it was 4 years ago. The reason I want to cbt is now is PTSD and depression plus a reasonable realisation that life is useless
I feel you. All my friends with long covid also wish it had just killed them at the time. It's fucking stupid that we just had to go through this long process of losing everything and essentially dying without being allowed to die. Life is useless but a hell of a lot easier if you're not permanently fucked by this virus or something else.
 
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P

PhDone

Experienced
Jul 29, 2024
269
unsure if i have ME/CFS but its very possible, i got covid in september of 2024 and just recently got way way worse. i've had a POTS diagnosis since 2022. i've always had PEM but it's just been getting harder and worse to deal with.

my health is abysmal and plays a huge part in why i want to CTB.

chronic illness is genuine torture and it feels like i'm already in a personalized hell made for me
I hear you. It really is a personalised hell. Every part of the experience is exactly the worst possible thing I could go through. So sorry to read this.
@fireplace19 you are totally right re the 10year thing. I did an AI thing a couple of weeks ago, asked it to give me timeframe for effective disease modifying treatment, based on research, funding, patient stats, comparison with other illnesses. It said min 10yrs. I am no fucking sitting here in this hell of a non life for that long. No way.

Thanks for this thread and for everyone reply on it. There is an aloneness in this nightmare that goes beyond imaginable hell. So sharing these bits with others feeling how I do helps a lot.
 
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mourningyesterday

mourningyesterday

Member
Apr 30, 2025
49
Same here. Losing my partner was just the last thing on a long list of things I've lost to this bullshit illness. I don't intend to stay around and lose anything else. My life and legacy are already pathetic as is, don't need it getting any worse. Hugs from me to you.

There's not really a test for it, if you get diagnosed it doesn't do shit. There's no treatment or cure. Barely anyone believes it's even real. I get you, I could barely eat for like 8 months. Eating now but doesn't matter, no point in keeping my meat bag body around for all this nothingness.

Hugs. Nobody understands this shit but us.

I've likely had it for 10 years but mostly moderate. Now am quite severe, even with all the adaptations and meds. I really don't think there's statistically a good chance for me. I absolutely hate the idea of being around in 10 years, still bedbound, watching everyone and everything I once loved moving on and forgetting me. I'd rather ctb any day of the week.

Yep. The state of things makes me believe many many more people will come down with long covid before it's ever taken seriously. I don't want to be around to see it. Good on you for avoiding the virus. I was stupid and after 3 years I believed the propaganda that it wasn't serious and it'd be ok. I lost absolutely everything. Many such cases. Stupidest planet and stupidest species ever created.
u summed pretty much how i feel perfectly, i sit and watch things or hear things on my phone and from family members and feel like a caged animal thats had their freedom taken from me. its torture
 
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sweetreliefpls

sweetreliefpls

Member
Jun 10, 2025
82
I caught covid in late 2023 and have been so sick ever since. Diagnosed with MCAS, ME, POTS and much more. Spent 7 months in hospital this year and am now just spending 99% of my day in bed fucking miserable.

I don't wanna spend decades doing this. There's no point. It's just endless suffering, watching everyone leave you and live while you'll never be able to.

Anyway, anyone else have these conditions too? Seems like ctb is a huge cause of death with these conditions. Just thought I'd reach out in case anyone was here to talk.
I have a version of this from chronic Lyme disease, covid made it worse, and then also other infections added on top. Lyme disease can act like HIV and suppress the immune system. Lyme may be at play in long covid, as tests aren't accurate. Anyway I feel similarly to everyone on this thread, I've lost everything now, am housebound with my parents, and feel terrible and often in pain. Latest symptom is not being able to sleep basically at all.

What are your chosen methods? I managed to source SN, hoping it's high purity. I had planned to do it but then read some threads on failure, and SI and guilt kicked in. I'm trying some treatments but really I think CTB is probably the answer.

How do we get over SI when really we wish to heal (but seems like we can't)?
This bit about getting over SI resonates with me. I may have to really dissociate and use drugs to do it… what about you?
It is indeed just pure suffering. I think burning in hell for eternity would be easier than this. PEM is exclusive to MECFS so if you have PEM then that's that. A lot of people will have you believe you don't have it and PEM can come with POTS or whatever. I fell for that too, but it's just because ME is such a terrible diagnosis that nobody wants to have it. So I did the POTS exercise stuff and essentially killed myself already.

Hugs. 10 years of therapy couldn't save me from the dark pit of hell that is this illness. Nobody can cope their way out of essentially dying while still being alive. Losing absolutely everything to this illness would kill anyone. Oh I just realised you're talking about CTB not CBT hahhaahha. Well, I think it's still hard. There's survival instinct, and there's the fact that we don't actually want to die. We want to live, but we can't. Makes it hard to die.

I feel you. All my friends with long covid also wish it had just killed them at the time. It's fucking stupid that we just had to go through this long process of losing everything and essentially dying without being allowed to die. Life is useless but a hell of a lot easier if you're not permanently fucked by this virus or something else.

I feel you. All my friends with long covid also wish it had just killed them at the time. It's fucking stupid that we just had to go through this long process of losing everything and essentially dying without being allowed to die. Life is useless but a hell of a lot easier if you're not permanently fucked by this virus or something else.

I feel you. All my friends with long covid also wish it had just killed them at the time. It's fucking stupid that we just had to go through this long process of losing everything and essentially dying without being allowed to die. Life is useless but a hell of a lot easier if you're not permanently fucked by this virus or something else.
 
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UnrulyNightmare

UnrulyNightmare

Wanderer
Jul 3, 2024
469
Yeah. Sorry to hear how bad things are for you. Sounds like you have a hell of a rough time! 🫂

No hospital for me. Besides few ER trips and testing stuff.
Caught covid in 2022. Lost work, life, friends, family and freedom. Now stuck at home all day, everyday.
It did get a bit better after a year and a half. Before then it was just dark rooms and lying down. At least I can sit up and have a curtain open these days.
 
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Xiaojiu

Xiaojiu

cease to exist 不复存在
Mar 28, 2025
678
I don't have those conditions. But, I understand how you feel. I have chronic illnesses with no cures and chronic pain 24/7. I'm homebound and can't do much anymore. Everything I try to do just causes me more physical pain. This crap is what brought me on this site. I feel like dying everyday but I keep trying everyday still for the people that care about me. It sucks ass
 
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M

Motoko

Student
Feb 27, 2020
100
To all people who feel bad form covid: did you take vaccine? If so, how do you know if it's covid or a vaccine?
I was vaccinated and this is when it started to get worse.
 
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UnrulyNightmare

UnrulyNightmare

Wanderer
Jul 3, 2024
469
Yeah had all the shots.
I know it wasn't the vaccine because my symptoms started directly after a covid infection, months after the last vaccine.

Although I guess you never know for sure if they helped or not. But with the way vaccines work and the circumstances I'm pretty sure it was not the vaccine that caused any of it in my case.
 
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U. A.

U. A.

"Ultra Based" gigashad
Aug 8, 2022
2,601
The US at least has brainwashed people into thinking covid doesn't exist and that they're all safe and it's 2019 again. Covid never ended, this is not a post-Covid world. 1 in 98 people are currently infected and hundreds per week still are dying from covid, and many more are being disabled by the long term effects of it. They just came out with a study showing that Covid awakens "sleeping" cancer cells. It triggers brain damage, dementia, and all the stuff you mentioned like POTS and ME/CFS plus Epstein Barr and others. It's a viper of a disease and no one is even trying to protect themselves or others from it.

There's no real treatment for ME/CFS, either. Doctors dismiss you constantly or call it anxiety. LongCovid, they're even terrified of saying that name! People's anuses clench when they hear the word "Covid" they're so scared of it. Healthcare is completely lost and thinking masks don't do anything, but still put on those useless surgical masks and tons of gloves (like touching a person's clothing will insta-infect them with rabies or something). They're so intensely terrified out of their minds of blood but will suck down your snot day in and day out just fine.

I have POTS and ME/CFS as well but have been masking since 2020 and have never had Covid because you know what, I already HAVE POTS and CFS from other viruses, and I say NO THANK YOU to even more suffering.

One of the most on-the-mark posts on this site.
It's not just the US - basically every industrialized capitalist nation has followed the same play. East asian collectivist societies where mask use was already a part of life beforehand at least were better about it, faster, and for longer, but things are basically back to before. They were just better to begin with on masks but the crushing work culture means no one takes a sick day still, they just wear a poorly fitting mask while infectious.

20-50% of infections are asymptomatic and odds of some lasting effects start conservatively at 10%. The more preexisting conditions you have the more likely you are to get fucked. They've found the thing directly infecting basically any organ at this point - heart, lungs, brain, kidneys, whatever. Hundreds of thousands of papers on the databasa LitCovid, mostly free for anyone.

This is basically like polio but worse, because it's just not lethal or debilitating enough or as quick/frequent so people literally don't know what the fuck is going on. I constantly hear people surprised that the virus even still exists - as if it magically went the fuck away. As usual all of us plebs' bodies are just fuel for the industrial machine; all the better if we're sick so they can profit off our illness(es) and/or we can just die and not "burden" the system.

To all people who feel bad form covid: did you take vaccine? If so, how do you know if it's covid or a vaccine?
I was vaccinated and this is when it started to get worse.

I'm just acknowledging this as a parallel real issue - there is always a risk from vaccines too though it's a fraction of that of the disease. Most people I know with multiple autoimmune issues or LC have severe reactions to the mRNA shots but again - gov't doesn't care enough to properly support alternative types (there are several kinds of vaccines that work differently) not support the minority of people that get fucked by them. Now you have fucking RFK up in there planning to gut mRNA research which like cool they aren't a magic bullet but you know what's better than fewer options? MORE. Fund MORE better research, not less, you steaming pile of dogshit faux science-denier. It's your damn fault the CDC just experienced a fucking mass shooting, fuck you.
 
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F

fallenscales

Member
Nov 25, 2024
16
Yeah this is why I'm here. The illness itself and having to take strict precautions at all times just to avoid getting reinfected and making it worse. Which I can't handle doing anymore because I have no support from anyone else and I'm too severely ill. And I'm not gonna sit around waiting to get reinfected and so sick I can't even move or think, constantly dreading that day while being mostly stuck in bed already anyway.
I finally got to move somewhere safer where I don't have to completely run myself into the ground just to avoid the damn virus (and that's safer for other reasons) a couple months ago, but I'm being forced to move out in about three weeks and it's unlikely wherever I end up will make it possible/bearable to avoid getting infected again.
All because this society is so sick and selfish that no one will do the bare minimum to not spread this horrible virus. Even to their own family who they pretend to love.
 
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wait.what

wait.what

no really, what?
Aug 14, 2020
1,000
@fireplace19: when you say "MCAS" do you mean "Mast Cell Activation Syndrome?" I've had bouts of that throughout my life. Autoimmune disorders run in my family, but my sister and I have been so much worse since we had pre-vaccine covid. No one calls it "long covid," they give it a long list of letters instead, but increased sickness has been kicking our asses since November 2020.
 
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U. A.

U. A.

"Ultra Based" gigashad
Aug 8, 2022
2,601
@fireplace19: when you say "MCAS" do you mean "Mast Cell Activation Syndrome?" I've had bouts of that throughout my life. Autoimmune disorders run in my family, but my sister and I have been so much worse since we had pre-vaccine covid. No one calls it "long covid," they give it a long list of letters instead, but increased sickness has been kicking our asses since November 2020.

Cause I happen to be here now and can answer quicker: yes, that's the acronym, and a very very common result of (long) COVID.
Also am I on drugs or did you have another post on this thread ("viruses don't respect zip codes")? We exchanged a few messages years ago but I had no idea this has happened to you, so sorry. </3

this society is so sick and selfish that no one will do the bare minimum to not spread this horrible virus. Even to their own family who they pretend to love.

That's it. The mass-lying is one thing, but people really don't fucking care about other people in non-collectivist nations especially. How horrible to me minorly inconvenienced for a brief period, even to spare a life! People like to bitch about masks, but who bitches about pants? "They" also make you wear those in most places, and under threat of punishment by fucking law no less!

I really wish I could scream about this stuff to the entire forum. Most of us here in one way or another are already severely disadvantages and will be among the fucking first ones in the grinder.

It's just...

1754951409184

so horrible...

1754951274631

and well-documented.

1754951541376

Ironically, the fact that this is all as bad as it is precisely due to governments not publicising this info & actually protecting people makes me never want to get physician-assisted murder. That so many governments put so much effort into killing their own people - actively or passively - that the notion of giving them the satisfaction of dying by their rules and regulations makes me want to fucking puke.
 
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qewpie

qewpie

bedbound, bouncing, broken
Aug 3, 2025
159
Yeah this is why I'm here. The illness itself and having to take strict precautions at all times just to avoid getting reinfected and making it worse. Which I can't handle doing anymore because I have no support from anyone else and I'm too severely ill. And I'm not gonna sit around waiting to get reinfected and so sick I can't even move or think, constantly dreading that day while being mostly stuck in bed already anyway.
I finally got to move somewhere safer where I don't have to completely run myself into the ground just to avoid the damn virus (and that's safer for other reasons) a couple months ago, but I'm being forced to move out in about three weeks and it's unlikely wherever I end up will make it possible/bearable to avoid getting infected again.
All because this society is so sick and selfish that no one will do the bare minimum to not spread this horrible virus. Even to their own family who they pretend to love.
Hey welcome to the club. Do you by chance wanna take me to the bus with you!! (half-joking)

my new PCP just said "I've never seen a Long COVID patient ever"

so no meds for me ig
 
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fireplace19

fireplace19

What’s the use of burning red hot?
Feb 7, 2021
37
@fireplace19: when you say "MCAS" do you mean "Mast Cell Activation Syndrome?" I've had bouts of that throughout my life. Autoimmune disorders run in my family, but my sister and I have been so much worse since we had pre-vaccine covid. No one calls it "long covid," they give it a long list of letters instead, but increased sickness has been kicking our asses since November 2020.
Yes mcas. I got several things after covid. Autoimmune runs in the family too. Since they haven't sorted everything to do with long covid and how it works or how these other conditions work I have just been given the diagnosis of long covid in general and the individual conditions I definitely aquired.
 
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It'sMyLife

It'sMyLife

Little bundles of futile hope we are
Apr 18, 2020
187
I hate to see anyone suffering like the OP and others are because of this. I recently received an article I get from a doctor who I have followed since about 2000. I've observed him as being ahead of many things by several years but I'm getting off topic. One thing he has never wavered on is vitamin D levels and the correct way to test for them. Years ago my mother was seeing a nephrologist and he kept warning she might need dialaysis. I knew from reading his articles many older women had vitamin D deficiencies with low kidney function being one indicator and a simple thing to do was give them cod liver oil so I bought some capsules and convinced her to take them. A month after this she went back to the doctor and got tested. It was the first time she improved and he said "whatever you're doing keep doing it" but he didn't bother to ask her what. And this kidney "specialist" never bothered to do something basic like check her vitamin D levels. My point of telling this is that I feel that this man , Dr Mercola , tells truth and does it for nothing. Yes, he sells supplements but they are very good quality. I'm sure he would like you to buy his products but the knowledge he gives out he does for nothing.
So my point now is to share this article that he just put out about long covid . I could post the whole thing here I guess but it is a little lengthy. The main jist of the article is that niacinamide is one big thing anyone with long covid can take to help . He goes into a lot of info on how , why and how much to take. He does sell his own version . What he states as being very important is how much and how often to take it - specifically 50 mg three times per day. If you go over to amazon or wherever and look up niacinamide many of them are 500 mg . Mercola's bottle is 270 tablets for $25 (US) which would last you 90 days at 3 per day. I know you're in NZ but I"m assuming you can get it there. I suggest just subscribing to his newsletter so you can read the article because if I give you the link it might not work unless you do. I'll post the link anyway and it's possible you can still read it . I have a couple of other things I can recommend as well to help boost your immune system naturally if interested . I hope this helps you somehow.
 
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Dot

Dot

Info abt typng styl on prfle.
Sep 26, 2021
3,728
I hate to see anyone suffering like the OP and others are because of this. I recently received an article I get from a doctor who I have followed since about 2000. I've observed him as being ahead of many things by several years but I'm getting off topic. One thing he has never wavered on is vitamin D levels and the correct way to test for them. Years ago my mother was seeing a nephrologist and he kept warning she might need dialaysis. I knew from reading his articles many older women had vitamin D deficiencies with low kidney function being one indicator and a simple thing to do was give them cod liver oil so I bought some capsules and convinced her to take them. A month after this she went back to the doctor and got tested. It was the first time she improved and he said "whatever you're doing keep doing it" but he didn't bother to ask her what. And this kidney "specialist" never bothered to do something basic like check her vitamin D levels. My point of telling this is that I feel that this man , Dr Mercola , tells truth and does it for nothing. Yes, he sells supplements but they are very good quality. I'm sure he would like you to buy his products but the knowledge he gives out he does for nothing.
So my point now is to share this article that he just put out about long covid . I could post the whole thing here I guess but it is a little lengthy. The main jist of the article is that niacinamide is one big thing anyone with long covid can take to help . He goes into a lot of info on how , why and how much to take. He does sell his own version . What he states as being very important is how much and how often to take it - specifically 50 mg three times per day. If you go over to amazon or wherever and look up niacinamide many of them are 500 mg . Mercola's bottle is 270 tablets for $25 (US) which would last you 90 days at 3 per day. I know you're in NZ but I"m assuming you can get it there. I suggest just subscribing to his newsletter so you can read the article because if I give you the link it might not work unless you do. I'll post the link anyway and it's possible you can still read it . I have a couple of other things I can recommend as well to help boost your immune system naturally if interested . I hope this helps you somehow.

Slf ws speakng t/ 1 persn apprx 11 yrs ag/ - thy hd CFS fr 6 yrs & thrs ws VitD levls all alng

Th/ multple othr ppl tht slf knw dd nt hve tht reasn fr thr CFS bt = alwys wrth checkng all of thse factrs out imo jst in cse
 
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It'sMyLife

It'sMyLife

Little bundles of futile hope we are
Apr 18, 2020
187
Yes Dot and thank you for your response. My reason for telling the story about my mother was to show that the doctor I'm mentioning is that he does give you knowledge that works and you can do yourself. Vitamin D itself is very important of course but in this case the niacinamide is what I wanted to share. And you can't get really quality supplements at box or chain stores. His niacinamide is available on Amazon where you can see some reviews. Another thing to look into is IP6 gold. It has helped many people with varying health issues and it does not interfere with any medication they might be taking. Do not buy any off brands if IP6 or generic versions
 
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Busridin'26

Busridin'26

Hating every minute of being alive.
Dec 8, 2019
1,933
Didn't read every post on thread(srry im not ok rn) but YES. I have many conditions and there's a lot of dif names but holy shit the time I got COVID and after... well I was never the same.


Plus ME/CFS got officially diagnosis but for me it mixes with other health stuff.


Its fucking awful. No one really understands the tired. The desire to do things. Pushing ones self. Using adrenaline instead of core energy. The continuously crashing.


It's... a lot.
 
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