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 don’t think long covid is well understood.

Is it like a chronic fatigue / ME post-viral response of some sort?

I know it’s treated very seriously in Germany with rehabilitation etc. I feel that we have a culture in the UK (which I don’t agree with) where most long-term conditions are seen as “playing the (insert disability or condition) card”

My child has long covid and as a result has barely managed above 75% school attendance as a result due to their symptoms for the last 3 years. It’s real and whilst at the milder end of the scale is still having a daily impact. YANBU

ZenNudist - And all the things that you did want to do.

Yes. We used to have clinics, but they seem to have gone? When you think that few people are jabbed now, as everyone's catching it, surely that means there's a lot of cases. But I suppose the fact is "everyone" wants to forget Covid, live a normal life, and so it's easier to dismiss it. It's easier to gaslight or victim blame.

I have a weird bruising response to viruses since having covid, and it's being tentatively linked to long covid - still having ongoing tests. The last time it happened, it was so bad I was tested for DVTs.

Whenever anyone says that covid is just like a cold, I show them photos of what happens to my arms and legs when I'm ill.

Because huge swathes of the country believe "it's just a cold" 🙄

I listened to an interesting podcast about this - it’s on iplayer Suzanne Davies, the age of diagnosis.

Essentially “long covid” falls into two camps:

• Those people who had a severe infection and have lasting but expected complications around lung function etc - this is real long covid and can be treated over time
• Those people (apparently the majority) who had a mild infection, or in some cases no known infection at all (pre mass testing or repeated negative tests) who experience a myriad of unrelated symptoms which can essentially amount to anything. There are over 200 symptoms of this type of “long covid” and the conclusion seems to be that it is psychosomatic, a stress response to a very uncertain time. This doesn’t mean these people aren’t suffering, it just means that the cause is psychological, not medical.

I agree, I would put LC into the same box as fibro, ME and CFS in terms of attitudes towards them. Are women more affected by LC? I think they are by the latter three which would explain the dismissive attitude.

I hadn't a clue that children could get it!

I’m not sure this is true.

I have severe long Covid. Very severe at one point. 2 1/2 years now. Fully vaccinated, mild infection, housebound for 2 years.

What actually happens is LC disrupts the nervous system in some people. They are placed permanently in fight or flight. As the body is unable to fight or flee they are pushed into a freeze response.

The brain recognises this and tries to keep them safe. It does this by misinterpreting symptoms to protect you. So you become too tired or weak to move. As it wants to keep you still and safe. It misinterprets things as dangerous even when they’re not. Eg a car ride. And tries to protect you more and more. It wants to immobilise you. And it can be very successful. Until this becomes its normal response, and somehow you have to break out of it. And it’s very very hard.

But it is doable. It’s not psychosomatic, it’s physiology. It does however tend to affect people with sensitive nervous systems.

And yes, it’s a fucker. It destroyed mine and my family’s life. And there is no mitigation or public health awareness. And they wonder why people aren’t working and PIP claims are up.

It’s just the same as other similar conditions though. Many viruses cause post viral issues in a proportion of people.

People with LC at least got studied and treated/supported initially even if it has reduced now.

Fibromyalgia and similar are largely overlooked.

Though they think they’ve found a test for CFS or ME, so that should be good. Though they are saying CHS/ME as though they are the same thing so I won’t hold my breath.

Because British society doesn’t care for disabled people and so they pretend we don’t exist, or the illness doesn’t.

I already had a long term but well controlled condition that has got considerably worse since having Covid. Funnily enough (not really) my condition is one of the ones they think Covid triggers and I have started to wonder whether repeated infections and a suppressed immune system actually has me experiencing LC on top of my existing condition or whether it just worsened my existing condition so much that I’m now quite disabled by it.

Where is this fight or flight thing written about? I’ve never heard of this.

Doesn't PTSD cause the same thing?

LC clinic? Chronic Fatigue clinic? That’s why they suggest meditation and stuff. To soothe the nervous system back into its normal response.

Both these diseases can include dysautonomia. Because the nervous system is screwed.

Yes I think it’s similar to pTSD in a way?

I agree. My husband had LC for three years. He’s very lucky that he then recovered.

I've had ME. Not long covid. It was crippling. It stopped my potential career as a classical musician. It was like a living death.

That's an awful thing to say.

What's CHS?

Couldn’t agree with you more OP

A typo for CFS.

That's why at 15 I was asking my DM to tell my friends I wasn't allowed out when they knocked on the door because I didn't want to tell them I felt too unwell to go out.

I guess it's also why I tried sixth form and when thay didn't work out I tried college three times. Clearly didn't want to continue my education.

YANBU.