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.

The NHS wouldn't provide long covid clinics and treatments (unfortunately a postcode lottery like everything else) if it was just being a wet lettuce 🙄

@mentalblank I was absolutely incensed at the posters saying it only affected ‘weak lettuces’ - I’m as tough as old boots - hadn’t seen a doctor in 23 years - suddenly all noise was twice as loud, sunlight twice as bright, constant back of head migraines , right side buzzing and felt heavy - I defy anyone not to think they’ve got MS, MND, brain tumour , mini stroke etc, etc and not be pretty frightened - as others have said maybe it would be better to call it post viral trauma or similar - as indeed you can get these things after any virus - the difference here was the sheer number of people affected ( all ages and sexes) because of the sheer number of people getting covid -

You sound lovely!

What is it to you if she needs help putting a chair away? If you're really that miserable that you see it as getting one over on you, ignore her and let someone else help.

Fatigue can be unpredictable and can hit suddenly. Pushing through when you're already utterly exhausted can leave people bed ridden for days. She probably has to rest all day before and all day after busy to be able to attend.

Are you really saying that if she's not well enough to do everything herself she shouldn't go to the group? What a horrible attitude.

OP all the government seem to care about is death from covid / can the NHS manage the number of hospitalisations. Its very short sighed.

I think if you join an established group, are introduced to everyone, and then spend ten minutes telling the group that you won't be able to help with set up , shut down, washing up or any exhibition work because you have a condition(and in that room there are other members with terminal illnesses , a brain aneurism held together with 54 metal coils, another who was in agony with her knee until she spent £20,000 having it replaced etc etc but who ALL pull together and do what they can ) then you should not be there.

She is explicitly saying there is nothing wrong with the woman because obviously seeing a small snapshot of a person’s life means you know everything about them. Imagine being so invested in a person’s chronic health condition that you watch their every move and bitch about how they can do some things and not others.

I've had LC for 3 years. Its miserable. But it's only since I really started to pace myself and not pushing through that it's started to get better instead of worse.

I certainly wasn't a wet lettuce. I'd go for a 'little swim' half a mile or so, then wonder why I couldn't get out of bed for days.

I have had to learn to budget energy in the same way that I would budget money. And often those 'aha but you can afford it really!' questions trying to catch you out are very similar. Eg if a friend asks me to go out for lunch I might say I cant afford it, can we postpone until next month. Most people understand that, although some would probably get on a piss secretly and say 'I saw her buying a coffee, she has got money!'

Well yeah, most people, when they say they 'can't afford it' don't mean they have literally zero funds to their name. They mean they wouldn't be able to meet their obligations and bills otherwise. I could bbuy a £200 pair of shoes.... but then I couldn't pay the gas bill!

Energy is the same when you have an energy limiting condition. I need to save some for getting home, making food, getting myself to bed, anything unexpected that might crop up with the kids etc etc. Just because you saw me going for a little walk last week doesn't mean I have energy for it today.

@AngelinaFibres Should wheelchair users also be banned?

Great analogy. I hope you manage to recover from this horrible, debilitating condition.

To be fair I never actually said long covid wasn’t a thing (in fact I explicitly said I’m sure it absolutely is a thing). And I never even mentioned ME in my post. All I said was that the individuals who I know who claim LC are the same types. No one is remotely surprised these individuals claim to have LC. I do believe it is a thing. I also believe that some people are at it.

It's a listed building with no wheelchair access.

I think you know that's not the point.

Hypothetically, if there was wheelchair access, would you accept wheelchair users who might need some help coming to your hobby group? Or is it strictly 'survival of the fittest'?

That’s by the by, if it were a state of the art modern facility, should wheelchair users be banned from your group because they can’t help set up?

I don't think people with ME are lazy at all. I didn't say that. I do however think there's a psychology of lapsing into helplessness once a diagnosis like this is applied. I have to be very mindful of doing this when my mental health gets poor and in all honesty, it's a lot of the reason I employ self help and don't use services.

This is such shit.

We fight to get better all the time. Who wants to be helpless and dependent on someone else?

And why does only people with ME lapse into helplessness? Why not people with other long term issues?

Because you think it’s psychological.

@TheClanoftheDook I don’t deny some people take the piss but your initial post implied anyone claiming LC was a wet lettuce - sadly there are a certain type of person who jumps on anything like this to their own advantage be that benefits or because they can no longer be arsed to put much effort into stuff , I’ve also made a post about that too - however I can assure you there’s vast amounts of previously healthy , active , non anxious people who have been affected by this- maybe you just haven’t met any - only yesterday a guy who is doing some work for me mentioned his stepson - mid 30s , active, no health issues who developed a bad neuro condition immediately post covid ( and not vaccinated) that gave him brain scarring,sent him blind in one eye and all sorts of debilitating things- he’s ended up back living with his mother and totally unable to work-presented like MS but isn’t- Let’s not forget a large number of healthy perfectly functioning under 70s with no known conditions actually died from covid , it clearly has the ability to cause a great deal of harm but like all viral things is hard to show on specific tests or MRIs etc -

😲who’d want to be there with that attitude?

I was a member of a hobby group. I’ve been twice in 3 years. They got me drinks, settled me down, found me cushions, the works.

And then there’s people like you…..

This is an awful thing to say. A certain 'type'. Do you think that about other illnesses?

No just as she is not banned because she does nothing. Interestingly, I am in a different group in a wheelchair suitable venue . Its a very big group and we have 2 members in wheelchairs. They both help with set up and shutdown in ways that are appropriate for them.

Maybe they don’t have to ration their energy though?

Interesting. Thanks.

I get that it's frustrating OP unfortunately they don't know enough about what triggers it and whilst studies have shown a reduction in Long covid risk as a result of vaccination its not huge (varied between 10-27% depending on study). There is also another cohort of people who have LC type symptoms as a result of vaccination so its an added complexity.

I understand fully how rubbish LC is I'm 4.5 years in and although I function I'm far from my peers of the same age (I was 34 when it all started). I have come a long way but my life has also changed.

I suspect there is a fear it would lead to lots of new claims for PIP etc.

The key there is that you've been twice in 3 years. If they had to do this every single week it would wear thin, as it has for the majority in my group. Over the year she has posted many messages on the watts app asking for help with this and help with that. Initially the very kind members offered. That has dwindled to no response now. If you are part of something then you have to give SOMETHING back however small. You can't just take from others.

Fucking hell! Wet lettuce!!!
the person I know who got LC, got it as a HCP in the early days of Covid. So 5/6 years on, they still can’t walk up stairs, they’ve had to retire. It’s just awful.
not a type, not a wet lettuce. Just their planned future taken away

This is a brilliant explanation.