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.

I think it will be like when smoking was first discovered to be dangerous.

It will be recognised eventually. As more and more people get it. But atm it suits everyone to pretend it’s not there. Until they get it.

Any serious infection can bring on long term life changing effects.

I caught Legionaries disease many years ago, and still suffer some effects today. 🤷‍♀️

It left me with brain scarring, through the resultant Encephalitis, bought on two strokes, and much reduced lung function. These were all proven with scans/XRays, so I wasn’t accused of ever being a wet lettuce though. 🙄

Some post viral illnesses aren’t easy to actually diagnose, hence the scepticism from some.

Covid could be extremely serious, and it wasn’t a cold. My fully vaccinated DH died of it in 2023.🙄

There turn will come….

But I have a vast amount of sympathy for those who have long COVID.

Very sorry for your loss.

It can be both. The first time I got it I was extremely ill for weeks and lost over a stone in weight. The second and third time it was no worse than a cold.

There was a documentary on TV a while ago, probably ch 4. They followed a young man who said he couldn't do this and couldn't do that so he needed PIP and other benefits. They'd filmed him for a while and he'd started to get used to having them around so he was letting his guard down. He walked with 2 sticks and 'could barely get around his own house and couldn't bend to pick anything up'. The producer 'accidentally ' dropped a £20 note on the floor whilst they were filming. The young man started to bend to pick it up , remembered that ' he couldn't do that' , looked at the producer and said ' oh very clever'. The producer laughed and said ' you would have been all over that if we weren't here wouldn't you' . There are people who are compromised. There are people who are taking the mickey

Do you have a link to a news story about this enquiry regarding over-diagnosis? I’ve googled but can’t find anything. Thanks!

It definitely happens. There's little point pretending it doesn't. And In a way , who can blame them !? Life's really relentless nowadays and if there's a way to 'opt out' - well, who's the mug ? (We are !)

I believe the symptoms of ME. But I think it becomes a self fulfilling prophecy

Right now, yes. There was a time where I’d have to be carried out.

In my experience this is so true. I know two people who's lives were put on hold for 2 to 3 years after glandular fevour with chronic post viral fatigue. I think they would say they never regained their energy levels. I know others who would say they are absolutely exhausted for months after having viral infections. One of our younger family has onset Asthma after covid and then a year later bacterial pnmeunia due to post viral complications. I think there is a whole section of our communities trying to function with severe health restrictions due to post viral complications and we don't seem to think it is a priority for our health systems to deal with it.

Health scientist here, it’s because it’s very difficult to measure in terms of diagnostic criteria and also variable. Hospitalisations and deaths are easily measurable discrete data points.

I apparently have long COVID according to my GP record and my occupational health department. I don’t. 🤷🏻‍♀️ I got ill with a combination of work stress/burnout, a pancreatic condition and fatigue that eventually turned out to be cancer. No matter how many times I tried to explain to my GP that yes, I’d had COVID several months ago and yes, I’m really fatigued and burnt out and my mental health is crap, but I don’t think it has anything to do with COVID, she wouldn’t hear of it.

My occupational health department doesn’t understand the problem with my pancreas, never heard of it before and the nurse was googling it during my appointment. She didn’t understand it, so was like, I don’t know what this is, so I’m just gonna to say long COVID because I can see you were off a few days with COVID earlier in the year. 😩

And then I was diagnosed with stage 3 cancer 2 months later, which probably explains the fatigue. But apparently, I still have long COVID. I don’t. Apart from the cancer, I am perfectly healthy and feel great. I can’t shake the label though. I was just an easy box to tick to get me out of the room.

@CrispsPlease it’s not really a self fulfilling prophecy. It takes a lot of care for me to manage my ‘invisible’ condition. If I fail to plan and pace, if work gets too intense, I become ill. That’s fairly normal for everyone I’d say. The difference is the point at which it happens.

After a period of serious multiple stresses- trauma- I became ill. I left the sofa only to go to the toilet. Crawled upstairs at night. Cried with pain. Did a few hours paid admin work, but it took me all week.

After diagnosis and supporting (not curing) medication, tweaked a few times, I’ve clawed my way back to being able to work 26 hours a week, and go for a gentle walk. If circumstances conspire to prevent proper pacing, I get ill. People ask what’s wrong because I’m clearly not well at that point.

The difference between illness and tiredness- I don’t recover after a rest. Send me on a month long restorative holiday, and I’ll still be exhausted. In fact, I don’t really go on holiday because organising it and going takes more energy than I have available.

Holiday = more work beforehand, more stress while away and more work when you return. Much though I’d love a holiday, it would do me no good at all.

On occasion I’ve prioritised something fun over looking after myself- a concert with DH. Bad move. Might be nice while you’re there (arguably) but there’s a price when you get back.

Maybe some people think I’m a wet lettuce. I have to hope the ones I care about know better.

To answer your question - if you are looking for an answer: It has always been the case that relatively minor viral illnesses can cause long term problems - that didn't just appear in 2020 with covid. It's one of the expected, if relatively rare, outcomes of having a viral infection, which is why there isn't a huge focus on it. Some people's immune systems can be put out of whack by any number of infections, covid isn't unique in that respect. We can all freak out about covid and worry to the ends of the earth and people will still end up with long term symptoms and suffering from the many many other infections that existed pre-2020 that no one ever gave a shit about.

@Boomer55

Sorry to hear how horrible life’s been for you. I hope you find some comfort from the nicer posters on here.

Sorry about your Dh. That’s just have been awful x

’just a cold’😡

@AngelinaFibres and people like that really really fuck me off, and sadly there are lots of them - it’s nearly always people who are in a position to claim benefits too. Anyone I know who wasn’t in a position to claim certainly wasn’t taking the piss-they just wanted to be well again and earning and actually enjoying life.thats not to say of course everyone that could claim was taking the mick , it just seems there are a bunch of people out there who make it their life’s work to screw the state and do as little as possible.

But Covid triggers much more of them than any other disease.

I haven't seen research that shows that - is there new evidence to demonstrate this?

With all due respect, if you have debilitating fatigue that nobody in your personal life or professional life would know about, you don’t have debilitating fatigue.

Debilitating fatigue is having to live upstairs to be near a bathroom so you don’t have to walk up and down stairs. Choosing between having a shower or going to an appointment. Going off sick at work regularly because every cold or infection wipes you out.

I work part time, I have a child, a husband, a home so don’t believe I’ve lapsed into helplessness. I’ve had ME since I was 7. It takes an average of 7 years to get a diagnosis. I’m not sure that people looking for an easy life would persevere for that amount of time. People have died from CFS/ME, it was listed as the cause of death. That didn’t happen because they got a label and decided to lie down and not bother.

I waited a year for an urgent operation, I was often in pain and worked through it except for the two occasions I was in hospital overnight and the week when I had the pain, a cold and thrush and thought fuck this.

ME was different, and to @CrispsPlease it's not the same as fatigue from parenting. It's not the same as fatigue from parenting an autistic child where at one point I was either working or caring for DS for 16 hours a day without a break then being woken by him every two hours through the night. He was having multiple violent meltdowns a day. I have no idea how I got through that, but the fatigue was nowhere near that of ME.

It is not a normal level of fatigue. It is not 'feeling a bit tired'.

I really sympathise with people who have long covid but we didn’t go into lock downs and take drastic measures to stop people getting long covid. We went into them to limit the number of people the health service had to deal with at any one time. I imagine long covid gets about the same amount of attention as other similar conditions.

'you are looking for an answer: It has always been the case that relatively minor viral illnesses can cause long term problems - that didn't just appear in 2020 with covid. It's one of the expected, if relatively rare, outcomes of having a viral infection'

This. Post viral illness has always been a thing. We don't call it 'Long Flu' or 'Long Gastroenteritis'.

The treatment is the same, rest and recuperate. People seem to always apply more drama to anything covid. Sorry for anyone who lost anyone to covid but you can sadly die of any virus.

What do you mean by ‘self fulfilling prophecy’? I’m disabled with ME. Why does that make you a mug? You’re not supporting me. I don’t claim benefits even though I’m no doubt entitled to, just because of people like you and your attitudes.

I cannot work any more. I used to work 80 hour weeks at times in my career. Believe me, I’m not lazy.

You wouldn’t say those things to someone with MS, or Parkinson’s or MND because it would be wicked. Why is it okay to say those things to ME sufferers?

It's really depressing to see that people are still claiming that Long Covid (and by extension ME/CFS) is psychosomatic and even only affects "weak lettuces". The evidence is overwhelming that it has a biochemical basis, including measurable effects on major organs, the brain, antibodies, mitochondria, etc. Plenty of people who were previously very fit and highly motivated have had debilitating effects from it (like not being able to get out of bed), and it could affect 1.8% of the population. Personally, I find it outrageous that more funding isn't being pumped into clinical trials for potential treatments - I wonder if this is related to it disproportionately affecting middle-aged women...

The one positive outcome of Long Covid will hopefully be that it kills off the theory that ME/CFS is solely psychosomatic once and for all (and just the other day, there was news of an epigenetic test for ME/CFS).

I was diagnosed with long covid about a year ago - I felt I was being given a label so they could get rid of me and stop using nhs resources to try and find what’s really wrong with me
I was referred to neurology and immunology departments but am still waiting 11 months later
Physio thinks I have a connective tissue disorder, GP agrees I have difficulty absorbing vitamins due to IBD and often need intense top ups, I pay privately for infusions
I also have long standing bladder, bowel and kidney issues
Still work full time (flexibly) but some days come home and have to go straight to bed, others I don’t get that far and have to pull over on my commute and sleep for a while before I’m safe to continue
I can manage ok some days, others I can’t walk from my car to where I’m going (sometimes very short distances) I’ve had to buy trolleys and wheeled cases as on a bad day a handbag is too heavy to manage
Glad to hear that I’m a wet lettuce, it’s all in my mind etc
I am 61 and have worked since I was 15