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

[Clutchingatfog]

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.

If you have a choice about whether to keep going on not, then you don't have the kind of "fatigue" that these people are battling.

With me, if I don't rest when weakness (or fatigue) hits, I lose the ability to speak, swallow or see. It's not resting as a life style choice,.it's resting because there is no other option.

If you can't understand the difference you are deeply ignorant.

I know so many people who are devastated by what enforced rest has taken from them.-.careers,. relationships , passions, their home. These people don't just fancy a bit of a rest

It’s not like that. You can’t have any understanding of serious fatigue if you think we can just get on with it.

Too fatigued to lift a fork, and had to fed
Too fatigued to do proper personal hygiene, which was terrible and too fatigued to have someone do it for you
Too fatigued to interact. It just caused a crash
Too fatigued to talk.
Too weak to breathe

Hiw the fuck do you ‘push through that?’ We’ve all worked and been mothers. Lots of us with mental health issues. It’s NOTHING like that your description.

Do you really think people WANT to be helpless? What planet do you live on.
Such a smug superior post.

As a society we're really callous and uncaring towards people with chronic health conditions. When literally millions of people got long Covid I thought that would change but it hasn't. It seems that only the well majority matters.

But she might have a less extreme version of it where she might end up in bed for most of 3 or 4 days after doing her hobby group. That is life for those of us who were lucky enough to just have the more moderate less extreme version of ME. That was enough for me to want to end my life. I can't imagine how awful it must be to be one of the 25% of people with ME who have the severe kind which leaves them maybe needing hospital or having to eat through a tube. And yes some people with the severe kind die. I'm imagining it can't be that different for long covid. You don't know how it feels to be in her body .

Wow, some people would love to be able to exercise and get out into the fresh air but they literally can't

It's not fatigue in and of itself though . It feels like having flu and glandular fever and having run a marathon all at the same time . Light hurts, muscles ache and twitch and sleeping is hard.

I think in part the government just don't want to accept/recognise it, especially as for many there seems to be little treatment options.

I mean the government have just announced they will do an enquiry into whether mental illness/neurodiversity is "over diagnosed" and one of the leading persons on that inquiry is the man who actively promoted CBT/graded exercise for those with ME (which was recognised as harmful and misleading even by the NHS). The other person is one the who supported criminalising those with severe mental illness under the Serenity scheme)

Some of the people on this thread are lucky enough to be ignorant at what Long Covid, ME, CFS and Post-Viral Fatigue can do.

I had CFS/ME in my 20s. It devastated my life. I still have to be careful, I still get tired etc but let me tell you, it is nowhere near what I had in my 20s. I would have to rest after a shower. I would have to rest along the way multiple times to simply walk a few hundred metres, I would forget huge parts of the day, I could sleep for 20 hours in a day. I went from getting top grades to word finding difficulties, not making sense etc.

I gradually improved over time. I was lucky that the benefit system supported me. I now work full time, am not on benefits and might actually be able to buy a house at some point.

These post viral conditions have existed for AT LEAST a hundred years. Read old medical textbooks and they describe a post-viral condition that affected people after Spanish Flu (1918-1920). Sound familiar?

Florence Nightingale had chronic fatigue from Brucellosis. She spent all her post Crimea nursing life in bed.

CFS and ME are the same thing.

Reported. Very judgmental and unkind.

I second zazazaaar's post 👏 👏 👏

https://www.rdash.nhs.uk/services/long-covid/dysautonomia-in-long-covid/

https://www.firstcommunityhealthcare.co.uk/long-covid-rehabilitation-guide-patients-and-carers/

Here you are.

To the people saying ‘only wet lettuces moan about this ’ how dare you ! I run a business, I hadn’t seen a doctor for 23 years apart from smear tests - it totally buggered up my nervous system for 10 months- pins and needles constantly, enormous back of head migraines, burning in eyes, buzzing in legs, weird dizziness- I am most certainly not a wet lettuce- I’m 63 and a tough cookie -and I carried on working through it all too - or how about our29 year old roadie friend - developed POTS and still can’t taste or smell and it’s buggered his lung function - he’s a 6ft 3 strapping northerner, most certainly not a wet lettuce!!

https://www.theguardian.com/commentisfree/2025/mar/17/long-covid-pandemic-britain-power-lockdown-disease

There was a good article earlier this year about it. I work in nhs and there isnt really any support for the children with long covid. My brother was a very fit individual pre 2021 but hasnt been right since he got covid. He is still working but i can see it is a real struggle. Has to have a lot of rest.and sometimes just cannot do things.

I make sure i get my covid vaccine (im a carer for an 80 year old) to try and reduce my risk, but i am lucky that i can get it this way. It seems to be a blinkered, "let it spread" approach. Even this nonsense about coming to work with it (and spreading it). It is maddening...

I’m in that area!

Thats why l know about it!

Dysregulation of the nervous system took me to the darkest places I’ve ever known. I’d be suicidal all day. And because it was so fucked up l’d feel numb too. So the normal circuit breaker of family and children stopping suicide wasn’t there. Terrible terrible terrifying time.

Last Christmas was the worse time of my life. Crisis team contacted, telling Dh that l absolutely had to die as l felt so trapped. Couldn’t eat any dinner. Terrible fear all day.

Its a dreadful illness,

You really don’t know what you’re talking about.

The level of fatigue being discussed here is being in pain all over and just having to lie in it because you can’t move, being unable to speak because the muscle effort it takes to make the sound or move your mouth is too much, not being able to open your eyes but being totally aware of what’s going on. Not being able to stand or dress / undress.

I’m glad for you that you haven’t experienced this but I think you need to open your mind and understand that this is way beyond the horrible levels of tiredness experienced by working mums

It seems that many people in this country just want to sweep Covid and its consequences under the carpet. I have an immunosuppressed child, so I take Covid very seriously. DP has three autoimmune conditions and Covid absolutely wipes him for weeks and that’s WITH the vaccine. Thankfully he hasn’t developed long Covid, but rather has a longer than usual recovery time. Even those with mild symptoms have no idea what Covid has done to their body or what repeated bouts will do, because it has only been around for a very short time and we’re still learning about it. And nobody knows if they will be the one who develops long Covid until it happens to them.

I think some people have a problem putting themselves in other people’s shoes. They think if someone is suffering with fatigue, they just need to push through it. Or if someone has a migraine, a couple of paracetamol will help them through the day. Depressed people just need to go for a walk and get into nature and everything will be ok. Just complete and utter ignorance and lack of compassion. I’m alright Jack, pull the ladder up.

But, if there was a fire in your home, could you get out ?

You can still get it even if you are jabbed!

@Senseandsensitivity that’s a really good article and correct - I fell ill September 2022, so very late in the Covid cycle but have gradually improved ( as per my post below) and by July 2023 I was much improved - but how I continued to run our business during that period I dont know !! Seeing the neurologist ( I paid) and getting advice on post viral dysautonia ( something like that ) cost me a fair bit too was a big help . The neurologist said she had seen a lot of it And it certainly wasn’t as some say ‘the vaccine’ as plenty she saw were unvaccinated- I was 100% convinced I had MS or MND - 2 years on I am relatively back to normal and the only things it left me with are very dry eyes, a tendency to the odd headache in back of head and dizziness if I eat a lot of gluten -

I wasn’t that ill either when I had Covid ( for 2nd time) and it all came on out the blue 3 days after I tested .

i know why itsall been brushed under carpet and hushed up as they couldn’t do anything about it now after the Tory’s totally botched it all in so many ways , but I do think there should be a concerted campaign again on handwashing, not spreading it etc

And l was asked that question during a social services assessment.

Sometimes you can, but you would release so much adrenaline you would be in a very severe crash for months/weeks on end. And would definitely struggle to leave in case of a fire then.

yes I just think whatever it is , a cold , a cough , a sore throat , people should have consideration for others and wear a mask 😷 indoors and when speaking to others. It’s selfish and unkind not to really.
I went to get my flu jab the other day. Someone there was coughing a lot and without a mask on. Doors were sealed shut, so no fresh air circulating. I put a mask on to try to avoid catching whatever they had. 🦠

Because as usual in the UK the Tory and Labour governments have only been interested in cutting costs and maximising profit rather than our overall health and welfare.

If long covid was properly recognised it would mean more investment would need to go into research and treatment and more people accessing disability benefits.

I have a colleague whose partner ended up in a care home with irreversible neurological issues after contracting covid and a friend with asthma who has long covid and now struggles to look after her young kids.

Long Covid is real but the right Wong media loves describing Covid as a 'flu' or a 'cold' and pushing the toxic narrative that long covid is just people pretending to be sick so they don't have to work...

Because for huge swathes of the population. It is just a cold