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.

Wow.

If you knew eg that they hadn't been able to breathe properly for nine months, would you still call them a wet lettuce? That's what long covid did to me. Thankfully I've made a lot of progress in the last year. I'm not over it yet, but have recovered enough that in most circumstances people wouldn't guess I have it, so wouldn't need to label me like that.

No need to answer, actually. Your comments are very ignorant.

You may know a lot of wet lettuces. I know a few myself. But it’s awful to generalise about people whose lives have been upturned. I was a really driven, focused person before I burnt out. I really miss the old me. Struggling to remember things, to organise myself and to concentrate, is really demoralising. And then there’s the pain.

Yeah cos all of us who got it long to be ‘wet lettuces’

It actually affects the more motivated type of person if you knew anything about it, which you obviously don’t.

I think there is some debate on this . Doctors seem to have used the same word for it interchangeably . That said I can't see a difference between those diagnosed with ME. And those with CFS. It seems to have the same debilitating symptoms . I never liked the term ME. And worst was when people called me fatigue . I wasn't tired . I was extremely unwell.

DS is 18 and has had acute pericarditis. The GP is very much convinced that his symptoms stem from Covid19 vaccine. He has seen many young people especially young men in that age bracket who are usually fit and healthy presenting with these same symptoms DS has. It seems to be recurrent. He has had the symptoms over six months, almost a year since he took unwell. So now it looking like a chronic condition....

How do you differentiate between long covid vs ME vs CFS vs post viral syndrome?

I lost my friends when I had it . I was the same age . Teen years into 20s. Friends didn't believe it and said I was no fun. Two of them had relatives bed bound with it and because I wasn't bed bound they believed I was making it up.

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.

@WalkingTheMiddlePath the difficulty distinguishing them is part of the issue.

I think ME results in CFS, but not all people with CFS have had ME. Though I am no expert. I believe fatigue is a specific state of the body being unable to marshal energy, rather than just being particularly tired.
I agree with ‘very unwell’. It sucks.

But that isn't the majority of people with the diagnosis! Far from. You can say that about any illness as well. There are always fakers.

People can pay for private vaccine but it is £100 or a little less. Which is expensive.

What a disgustingly ignorant and ableist thing to say.

I have Myasthenia. It has a lot of overlap with things like ME/long COVID but thankfully with Myasthenia the cause is now well understood. But before it was understood it was dismissed as psychological. It absolutely isn't. My muscle receptors work less and less effectively the more I use them

It does stop me doing most house work, yes. But it also stops me doing so many things I love - skiing, dancing, surfing, running

I might not look like I would love those things any more, thanks to the ravages of weakness and medication, but I can assure you I would like nothing better than to wake up one day feeling cured

What nonsense. Some of the most brilliant and driven people I know now have it. People who were sporty and resiliently and career focused

Not Long Covid but I remember at uni, many years ago, a young man the same age as me developed ME and had to leave the course. It was a physical condition - he faded to a shadow of his driven, studious self.

I don't help with set up and pack down at a volunteering thing I go to. I spend the day resting to make sure I can make it for the hour or so. I then spend a day recovering . Just that hour or two of talking will leave me often with wonky vision and difficulty swallowing and speaking. But it is worth it for my mental health. Don't judge what you don't fully understand. You only see the "best bits" and not all the time recovering from them
(Thankfully I can work from bed)

I had ME after a viral infection in my early 20's. I had to move back home, give up my career, and was mostly bedbound and in severe pain for years. Your flippant, ignorant comment is disgusting.

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.

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.

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.

My brother recovered from long-standing ME when he got divorced.

Or maybe she's just misdiagnosed.
I know for sure my ex inlaws family all looked down their noses at me and assumed my struggles were made up or psychological.

I would love to take my Myasthenia diagnosis (which explains my 20 years of struggles) to them and shove it up their judgy sneery a*holes

How do I edit a post? I hadn’t got far through the responses when realised I should’ve added to the list in my second paragraph:

where long covid doesn’t exist (with the added bonus that people who deny long covid don’t exist either)

Sorry but what see is other people doing all the work to get the group to actually happen in that room ( one had a new hip this year. Another had a new knee) and one lazy sod wafting in and out as she pleases because ' I'm sorry I have to save my energy to even attend' . What if everyone did that. If you can't fold tables , shift chairs then you could gather up a few cups and make some kind of effort. If you can't do that then you shouldn't be there. We aren't your staff.