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.

Agreed!

When people spout stuff like this:
I'm not being patronising I'm speaking from experience. I've had a serious illness that could have had me housebound still if I'd let it.

I’d love to know how you just don’t let a disability make you housebound 🧐. Do you give it a stern talking to and it leaves you alone?!

Oh God, you as well. You are talking about mental health. People with long covid are suffering with a physiological condition. It’s not mind over matter (not that it is with mental illnesses either in many cases). Do people similarly run out of sympathy for those with MS/IBD/rheumatoid arthritis and other debilitating conditions? Maybe they should just buck up too.

I've had particularly crippling bouts of poor mental health in the not so distant past. With that, comes horrible ongoing exhaustion and fatigue. A real horrible headachey, limb aching, sore eyed, fatigue. BUT, the advice wasn't the problem. The problem was me. I didn't eat properly because I just couldn't be bothered to make myself a healthy lunch -it felt impossible. I didn't get out, because of aforementioned fatigue and feeling hopeless. I didn't socialise because I felt disconnected from people and didn't want to burden them with my unhealthy state of mind. I'd have told a Dr "I can't" and I would have believed it. But the hard truth is "I can't" was really "I won't". So I started literally forcing myself outside (the garden ) then just walks around the block and built on it. No bloody running or gyms or fitness freak stuff.

I started having a bagel with a can of tuna instead of eating 3 bags of crisps because they were accessible. I cleaned one work surface at a time, then procrastinated. One work surface was better than zero. Then built on it.

All the outside advice is correct. Exercise (i.e literally just moving outside ) diet (meals that aren't takeaways or junk ) and small manageable chats with anyone, could be a shop assistant, do help ease fatigue. It's not the advice that's the problem. It's the refusal to accept that it's going to be painstaking at first to employ it, and doing it anyway. Nobody is owed the right of someone else coming along to sympathise and save them.

Yeah, she should be a government PIP adviser. She’s sort out the national debt in a week.

’Yoi could leave the house if you really want to’

That sounds like depression and not ME/CFS or long Covid causing PEM. I know I’d feel better if I went for a run initially. Then 2 days later I’d feel like I’d been run over by a bus. This is because with PEM your mitochondria are damaged so can’t produce enough energy. Exercise is literally toxic and the body releases cytokines (like when you are ill). It feels like you’re coming down with the flu.

For some people even showering or walking will produce this response.

Believe me, I was an avid runner and I needed that for my mental heath. I don’t get to do that anymore. Not because I’m not trying hard enough!

The only way to get better is to work out what you can do (this is different for everyone) hold at that level for a long time (months even) then gradually increase. This is a recognised and scientific strategy. Don’t comment if you don’t know what you’re talking about. It’s insulting to those who wish they could actually do anywhere near what they used to.

Do people honestly think it’s fun being in bed all day? I’m not at that level but have huge sympathy and understanding for those that have a strict energy wlndow. They are deciding whether to eat or have a shower. You honestly think that’s how they want to live?

I believe long COVID/ME have roots in mental health conditions. I'm not saying that to cause offence. And it doesn't mean I don't believe the symptoms are very much real.

And why do you believe this?

How do you know it isn't? I never tested positive for COVID but was so ill for so long with awful COVID symptoms following the vaccine (see my earlier post). We were the first to have it as NHS workers . I even paid for a private blood test which came back confirming I'd never had COVID. I've no idea what happened to me but it was a year of my life spent wheezing and being unable to breathe/taste or smell.

@CrispsPlease there's very clear evidence that Long Covid is not a mental health condition (although poor mental health can follow from Long Covid). Long Covid sufferers experience fundamental physical changes to their bodies which can't be explained as the impact of poor mental health alone. Your mental health can't change the way your blood clots and the way your mitochondria work.

You can ‘believe’ what you like. I could believe that the moon was made of cheese. I would be wrong. You are wrong. Look it up. Google is a wonderful resource.

More the 'its their own fault' than the vax, health workers had no choice!

But there are now peer reviews studies on this. It is a recognised vaccine injury and was raised at the Covid enquiry.

Still not part of the vaccine damages scheme.

Mental health fatigue is NOT the same thing.

You admit that you did not want to go out/socialise/eat right. Well I do. If I go to the shops I have to lie down afterwards due to a flare of physical symptoms. That’s not fun for me or my family. I eat well as DH cooks. I try to go on a short walk every few days. But I have the privilege of being on the ‘mild’ end of the spectrum. People are not choosing this and implying that they are is fucking awful.

You seem very fixated on mental health when this is a neurological condition. I don’t understand what about that isn’t getting through to you.

They’ve also recently found a blood test that is accurately detecting CFS/ME so that blows your mental health ‘roots’ out of the water.

Link to the latest blood test research for those interested or wanting to educate themselves
www.uea.ac.uk/about/news/article/revolutionary-blood-test-for-me-chronic-fatigue-unveiled-1

LC/MECFS is NOT poor mental health. It is not the same. I eat a completely healthy diet of clean foods. I don’t eat sugar or gluten. I don’t drink or smoke. I get out as much as I can, even if that’s just for a drive with DH. I do online classes and volunteer work online. I read and do crafts. I grow vegetables on an allotment in my garden (I do the planting in pots, DH does the heavy work). I do NOT lack motivation. I lack the energy and strength to walk, stand, drive and do anything physical. Sometimes I can’t even do the mental things, but if I pace I can usually manage it. I am always in a lot of physical pain.

You are comparing apples with pears. Go and read some of the studies which show that our bodies do not make energy like most people. Our muscles use anaerobic energy even when we’re sitting down. Our muscles produce up to 20 times the amount of lactic acid as a normal person. That is why we’re constantly exhausted and achey. Our immune systems are fucked.

I’ve raised an autistic child who didn’t sleep through the night till they started school. I’ve had cancer. I’ve had sepsis. I’ve had depression. I’ve had a 36 hour labour. The fatigue that I had with all of those wasn’t even a small fraction of this. Imagine you have full-blown flu, and you have to crawl to the toilet on your hands and knees. At the same time you have someone prodding you awake constantly and you haven’t slept for three days and nights. You couldn’t imagine it if you’ve never suffered it. And you evidently haven’t. So stop arguing, you’re making yourself look stupid.

I’ve never had any mental health issues in my life.

There is apparently a personality type that is more likely to get ME/CFS/LC that is the people who are always on the go and never stop to rest. The highly driven people. Maybe their nervous systems are already under pressure and a virus tips them over.

But LC/ME/CFS is not down to depressive thinking.

My doctor said to me ‘oh you athletes are the worst, you never rest. Be a couch potato like me!!’

Have you ever thought about sitting down and reflecting on why you want to believe these are "mental health" conditions rather than having a physical cause?
What is it that makes you struggle to comprehend even when lots of people have told you they are not.?
Do you just like to be oppositional? Do you feel uncomfortable about illnesses where you don't know the mechanics of how they work? Does it just feel good to plonk the blame on a group of ill people so then you can feel disdain rather than sympathy? Or are you just a tinfoil hat type person who thinks you are being really clever by insisting the real is false?

I expect its because (despite the suggestions of laziness etc on this thread) those are the people who do initially keep "pushing through" and "just getting on with it" and that just exacerbates things until it is too bad to ignore.

I think it is like quicksand, the more you fight it, take advice like DO MORE gradually, the harder the disease hits you back and the worse you get. Sadly, many sufferers were ordered to do graduated exercise therapy and CBT as CFS/ME was initially and erroneously viewed as an issue with learned helplessness, post viral atrophy and depression.

So doctors made them worse instead of better.

There was a great film not too long ago based on a PhD student who was hit with CFS/ME. She ended up in a wheelchair for years. She created an online community of people with CFS/ME and they’d chat over zoom from their beds. It helped with the isolation and loneliness that comes with it.

Yes exactly. I knew I was coming down with something so I decided to shoe horn that one last run in! And when I thought I wasn’t that bad I carried on working (physical job) and walking the dog. And I got worse and worse.

Maybe those (men usually) that take to their beds at the first sign of illness are less likely to suffer post viral issues…

Basically the opposite of what everyone is suggesting on here…maybe lazy people don’t get CFS/ME/LC…. Because they actually rest enough…

This is what my acupuncturist thinks. And he has worked with lots of people with chronic fatigue. He says there’s definitely a type (opposite of lazy).

I think that lockdowns affected some of the population so much that they have a defensive and minimising reaction.

My mum certainly does. She still rants a lot about the "just a cold" angle - and I have long covid.

For over a year, I seriously worried that it was terminally degenerative. I still come out in sweats of fear when I get a fatigue and fog episode because I feel like I might be losing my mind and have permanent brain damage.

How old are you, maybe it's peri?

Lots of issues with fluctuating hormones once over 40 that cause fatigue, joint pain, depression, poor sleep, brain fog.

Not saying it's peri obviously just worth considering that sometimes it may not be post viral illness and actually the ageing process in which case maybe consider HRT.

I think that's exactly it. Without exception the people I know who have ME /long COVID are all impressively driven and accomplished people

And my condition is so similar and I am no so cross with myself because I carried on working even when I could barely hold my head up or speak clearly. I still struggle all the time with the tension between my mind, which is a "never give up" type,.and my body, which I now know will only get better /not crash if I rest lots

STOP being so bloody patronising!
She has long Covid not just the brain fog associated with peri. Along with many other debilitating symptoms. Do hormonal changes cause PEM? No they do not. Do hormonal changes render you unable to walk to the shops?

For what it’s worth I’m on HRT and if I wasn’t I would be in a far worse state than I am - purely because it helps my mood.

Mine is not peri. I became ill age 59.