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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To wonder why the fuck long covid isn’t considered a serious outcome

453 replies

Clutchingatfog · 09/10/2025 21:19

Why is covid often only talked about in terms of hospitalisations or deaths? Even in determining whether we are eligible for vaccination, long covid isn’t factored in. Not vulnerable to covid? Are you kidding me?! Oh, you don’t factor in that vaccination reduces risk of long covid either? Got it. FFS.

Where is this fantasy land where people’s risk of LC doesn’t increase with reinfection, where people are magically spared if they are healthy, where kids don’t get it, where only people who are vaccinated/not vaccinated (depending on stance) get it, where only people who have severe cases get it, where long covid was something that used to happen earlier in the pandemic, where most people fully recover, where you are not left to rot. I want to move there!

If you have LC or now have to care for someone with LC, please tell me you understand where I’m coming from.

OP posts:
DreadingWinter · 09/10/2025 22:55

Two friends with Long Covid. Both completely convinced of the diagnosis. Both now dead because they actually had undiagnosed cancer and made the assumption that it was LC.

ArseInTheCoOpWindow · 09/10/2025 22:56

Sagaciously · 09/10/2025 22:51

I think, rightly or wrongly, long covid is dismissed by many as made up or psychological. And there’s a bias because many believe more women than men have it and it’s therefore more likely to be attributed to anxiety, stress, or depression.

My nephew’s partner has it. She also has fibromyalgia, ME, CFS, depression, anxiety and myriad other more vague ailments. Were we surprised the hear she has long covid? Not at all.

But they all go together.

Go back and read what l said about people with sensitive nervous systems. They are more prone to things like this as their system is on red alert all the time.

There is a link with ND and CF because their systems are more sensitive and easily dystegulated. It’s not pyschsomatic. It’s dysregulation

LarchFairy457 · 09/10/2025 22:57

Hulabalu · 09/10/2025 22:53

I just think the spread of infection would be so much lower if people would just stay home when sick and wear a mask if they feel ok enough to go out, to avoid passing it on to others . it should just be a common courtesy.

I agree, but we don’t have access to tests. I used to be sent them if I had symptoms but that’s been stopped and if I’m ill, I’m not going out to buy a test. People in public facing jobs are expected to have a Lemsip and carry on.

Hulabalu · 09/10/2025 22:57

LarchFairy457 · 09/10/2025 22:52

Before it gets deleted, I believe you. I’ve seen this happen and seen people judge. Anyone can become disabled overnight, but the mockers like to delude themselves that it could only happen to a certain type of person.

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Yes people think it’ll never happen to them, they should count themselves lucky instead of judging someone who’s suffering.

DramaLlamacchiato · 09/10/2025 22:57

I don’t have LC as far as I know but I have got gout. Had 2 flares before diagnosis once each time after I had it. I’m sure it’s related. YANBU I especially feel sorry for kids with it x

WalkingTheMiddlePath · 09/10/2025 22:58

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

So not only are you being scathing about and belittling ME or long Covid, you belittling a serious mental health issue like hypochondria? Would you have the same attitude towards other serious mental issues like bipolar or OCD? Bet you wouldn't .

JLou08 · 09/10/2025 22:58

Anyone could have complications from the flu. I caught it at 19 and ended up with a wheeze and repeated chest infections for around 4 years after it but just like covid, the flu vaccination is only offered for free to target groups.

ArseInTheCoOpWindow · 09/10/2025 22:58

AngelinaFibres · 09/10/2025 22:37

I'm in a hobby group with a woman who has supposedly got long covid. She arrives exactly on time and leaves early to avoid setting up/ packing away the room. She is apparently unable to push her chair across the floor to the alcove immediately behind her at pack up time. She is unable to carry her empty cup and plate to the dishwasher. She has to pass the bloody dishwasher in order to leave the building. Funnily enough she is always the first one in the queue to collect a large mug of coffee and a big piece of cake at break time. The full plate and cup aren't too heavy. The empty versions apparently are. We have 2 exhibitions each year in a beautiful professional gallery. She was too exhausted to help with the set up and pack down and unable to do any form of stewarding shift. She was however perfectly able to attend as a guest and to spend lots of time in the tea and cake area eating the tea and cake . She isn't ill she's a lazy fucker.

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I would have to behave like this if l was able to go to hobby groups. Energy had to be hoarded like a miser. One step too far and you’re in the red.

You don’t see or know the background.

zazazaaar · 09/10/2025 23:00

LarchFairy457 · 09/10/2025 22:52

Before it gets deleted, I believe you. I’ve seen this happen and seen people judge. Anyone can become disabled overnight, but the mockers like to delude themselves that it could only happen to a certain type of person.

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Thank you.

Holidaytimeyay · 09/10/2025 23:01

I agree, everyone seems to want to ignore and forget the effects of covid and the pandemic.
I have a young relative who had to go to hospital following the covid vaccine. Later on seemed to get virus and became ill, now has POTS and is unable to do very much at all. It’s all very well for the government to say that too many people are on PIP but why aren’t they looking into the cause of this, a lot of it could be related to Covid and the pandemic.

LarchFairy457 · 09/10/2025 23:01

Hulabalu · 09/10/2025 22:57

Yes people think it’ll never happen to them, they should count themselves lucky instead of judging someone who’s suffering.

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I have seen healthy, hard working people become disabled many times. One car crash, one seizure, undiagnosed cancer, a virus that caused sepsis. I don’t judge.

MySweetGeorgina · 09/10/2025 23:03

ArseInTheCoOpWindow · 09/10/2025 22:03

I’m not sure this is true.

I have severe long Covid. Very severe at one point. 2 1/2 years now. Fully vaccinated, mild infection, housebound for 2 years.

What actually happens is LC disrupts the nervous system in some people. They are placed permanently in fight or flight. As the body is unable to fight or flee they are pushed into a freeze response.

The brain recognises this and tries to keep them safe. It does this by misinterpreting symptoms to protect you. So you become too tired or weak to move. As it wants to keep you still and safe. It misinterprets things as dangerous even when they’re not. Eg a car ride. And tries to protect you more and more. It wants to immobilise you. And it can be very successful. Until this becomes its normal response, and somehow you have to break out of it. And it’s very very hard.

But it is doable. It’s not psychosomatic, it’s physiology. It does however tend to affect people with sensitive nervous systems.

And yes, it’s a fucker. It destroyed mine and my family’s life. And there is no mitigation or public health awareness. And they wonder why people aren’t working and PIP claims are up.

Edited
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So sorry you are going through this too. My brother has been affected like this and it has destroyed his life. He can no longer work or even go to the shops, his world has become very small

he was working full time before and and sporty

it is NOT psychological

it’s exactly as you say, he is physically exhausted from the smallest things

it has been years

i hope they find a cure

Sagaciously · 09/10/2025 23:03

ArseInTheCoOpWindow · 09/10/2025 22:56

But they all go together.

Go back and read what l said about people with sensitive nervous systems. They are more prone to things like this as their system is on red alert all the time.

There is a link with ND and CF because their systems are more sensitive and easily dystegulated. It’s not pyschsomatic. It’s dysregulation

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I absolutely believe it’s a thing. But the diagnostics are vague and unmeasurable which can lead to some people who are highly anxious about their health believing they have LC when they don’t.

AngelinaFibres · 09/10/2025 23:04

ArseInTheCoOpWindow · 09/10/2025 22:58

I would have to behave like this if l was able to go to hobby groups. Energy had to be hoarded like a miser. One step too far and you’re in the red.

You don’t see or know the background.

Show quote history

And you don't know anyone's else's health issues or what surgery they may be waiting for to ease a chronic condition. You can bet those people are pulling their weight though. If everyone sat there saying I can't do this because and I cant do that because then the hobby groups that others attend ' because I need it for my mental health' wouldn't even happen

SugarCookieMonster · 09/10/2025 23:07

I’ve had ME for 30+ years (I work part time). They do not want to know or to deal with us.

There was an interesting article about what is believed to be the first documented case of a ME outbreak at an LA hospital in the 1930s. Drs and nurses were struck down with a post viral illness that caused debilitating fatigue etc. After a long insurance battle a large settlement payment was made to the affected workers.

I may be cynical but a disease that is difficult to diagnose, that has no conclusive tests, affects mainly women, and has previously led to big pay outs seems perfect to sweep under the rug as there is little incentive for them to research it.

Unfortunately for LC sufferers, the mass casualties ramped up the numbers and the closest diagnostic match is ME/CFS. They’ve modelled all the ‘treatment’ options on that so depending on where you live it’s CBT, physio and if you’re lucky a clinic.

There’s a reason our campaign is called Millions Missing and we represent ourselves with empty shoes outside political buildings. Understanding, even in the medical field, is sporadic and limited.

Also, I am 100% a wet lettuce. I’ve had ME since I was 7. Missed out on so much but dragged myself to weddings, funerals, my graduation, propped up in a corner just to be there and suffered for days after.

Some people will never be happy with the amount you can give. If you look after yourself you’re a hypochondriac, if you don’t turn up you’re flaky, if you go and don’t fully engage with the social group you’re attention seeking, if you have a good day and actually act like a healthy person, they knew it and you were faking all along.

CassandraWebb · 09/10/2025 23:08

AngelinaFibres · 09/10/2025 23:04

And you don't know anyone's else's health issues or what surgery they may be waiting for to ease a chronic condition. You can bet those people are pulling their weight though. If everyone sat there saying I can't do this because and I cant do that because then the hobby groups that others attend ' because I need it for my mental health' wouldn't even happen

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If there's a reason you can't do something, then advocate for yourself. Don't just go round feeling bitter and ignorant and envying others who do articulate their limitations. If you can do it and just wish you have an excuse then get over yourself.

Over-exerting is life or death for me and I can end up in ICU if I do too much.

ArseInTheCoOpWindow · 09/10/2025 23:09

AngelinaFibres · 09/10/2025 23:04

And you don't know anyone's else's health issues or what surgery they may be waiting for to ease a chronic condition. You can bet those people are pulling their weight though. If everyone sat there saying I can't do this because and I cant do that because then the hobby groups that others attend ' because I need it for my mental health' wouldn't even happen

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It’s not the same though. Waiting for an operation is not the same as having to hoard the tiny bit of energy you have.

ArseInTheCoOpWindow · 09/10/2025 23:11

Sagaciously · 09/10/2025 23:03

I absolutely believe it’s a thing. But the diagnostics are vague and unmeasurable which can lead to some people who are highly anxious about their health believing they have LC when they don’t.

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But isn’t this the over protective brain stepping in and trying to protect them? So they may have it.

AngelinaFibres · 09/10/2025 23:12

CassandraWebb · 09/10/2025 23:08

If there's a reason you can't do something, then advocate for yourself. Don't just go round feeling bitter and ignorant and envying others who do articulate their limitations. If you can do it and just wish you have an excuse then get over yourself.

Over-exerting is life or death for me and I can end up in ICU if I do too much.

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I don't feel bitter. My life it lovely. Some people are genuinely ill. Some people are taking the piss. The person I am referring to would most certainly not end up in ICU because she had to put her own chair away . She'd be just fine.

ArseInTheCoOpWindow · 09/10/2025 23:13

MySweetGeorgina · 09/10/2025 23:03

So sorry you are going through this too. My brother has been affected like this and it has destroyed his life. He can no longer work or even go to the shops, his world has become very small

he was working full time before and and sporty

it is NOT psychological

it’s exactly as you say, he is physically exhausted from the smallest things

it has been years

i hope they find a cure

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He can get out if it though. You unfortunately have to change your mindset. Which is really really difficult. It took me 2 years. For 10 months of those 2 years l was too exhausted to wash my hair or shower.

CassandraWebb · 09/10/2025 23:14

AngelinaFibres · 09/10/2025 23:12

I don't feel bitter. My life it lovely. Some people are genuinely ill. Some people are taking the piss. The person I am referring to would most certainly not end up in ICU because she had to put her own chair away . She'd be just fine.

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Have you read her medical notes then? Studied neurology?

I don't go round divulging the details of my condition to people other than on a need to know basis.

If your life is lovely you would have room for kindness towards people who struggle

Givemeachaitealatte · 09/10/2025 23:14

I'm not sure why you're surprised to be honest, ME and chronic fatigue have not been taken seriously for decades. People think that you are lazy, making a mountain out of a molehill and want to get out of working.

I feel for you though OP any chronic condition is horrible to live with and life altering. I hope things look up for you!

CrispsPlease · 09/10/2025 23:15

Because at the end of the day : fatigue is felt daily by most working mothers. Life is very high pressure, no let up in the western world. It's very difficult for people to then have to muster up sympathy for a spurious syndrome that can result in extended time off work and life. Something not afforded to the average fatigued person.

I believe the people suffering feel debilitating fatigue. I really do. But I also have debilitating fatigue (I know mine is linked with poor mental health) nobody in my personal or professional life would ever know this. But there's no choice but to get on with it. There's no magic pill. No cavalry to come and save us. Diet, exercise and fresh air can really help in small doses (I'm too lazy to do the things I should ) most of us are if we're honest. But it does work. It's no good lapsing into helplessness. And I do think these labels allow lapsing into helplessness.

PropertyD · 09/10/2025 23:17

NewHome2026 · 09/10/2025 21:54

I listened to an interesting podcast about this - it’s on iplayer Suzanne Davies, the age of diagnosis.

Essentially “long covid” falls into two camps:

  • Those people who had a severe infection and have lasting but expected complications around lung function etc - this is real long covid and can be treated over time
  • Those people (apparently the majority) who had a mild infection, or in some cases no known infection at all (pre mass testing or repeated negative tests) who experience a myriad of unrelated symptoms which can essentially amount to anything. There are over 200 symptoms of this type of “long covid” and the conclusion seems to be that it is psychosomatic, a stress response to a very uncertain time. This doesn’t mean these people aren’t suffering, it just means that the cause is psychological, not medical.

I heard the podcast and I agree!

Hulabalu · 09/10/2025 23:19

LarchFairy457 · 09/10/2025 23:01

I have seen healthy, hard working people become disabled many times. One car crash, one seizure, undiagnosed cancer, a virus that caused sepsis. I don’t judge.

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We should count our blessings and show compassion for those who’ve not been dealt better cards. It’s all luck of the draw