The long covid sink hole

[Cortrach]

My brother has long covid. He tells me about it repeatedly, in great detail. About consultant appointments he has arranged for himself up and down the country, about how he is getting "support" from the "long covid community" which is as far as I can tell not a community at all but rather a collection of disparate individuals staring at the internet. He has been having long covid investigations for close to six years now. In all that time, no one has found any physical cause for his many varied symptoms as identified by him. Previous to him developing long covid he had atypical asthma for several years. Atypical asthma seems to me to be similar to long covid in that having it entailed him visiting lots of specialists who couldn't find anything wrong with him other than breathing in an anxious way.

I feel like I've lost him, and actually I need him because our parents are (genuinely) unwell with age related problems. He won't talk to me on the phone about it because he says it's too tiring for his long covid. I can't question the long covid because apparently he is surrounded by people who don't believe him and they are toxic.

I guess I just write him off, but I feel sad. He's my brother. And he's only 50! It's a waste of a life.

It’s not quite that easy…..

I couldn’t engage with anything remotely demanding. Still can’t a lot of the time. My limited energy went on the stuff l could do which wouldn’t crash me.

This is my story too. Can't do any exercise or get the most horrible post-exertional symptoms, but am grinding away in my high pressure law job, paying top rate of tax, supporting my family.

I am an exceptionally driven person, I love exercise and it breaks my heart that for the last 7 years I have been unable to do any form of vigorous exercise. There is absolutely no way that I 'want' this, or treat it as a malingerers charter.

Who was your vagus nerve specialist @ContentedAlpaca ?

Vagus nerve stuff tended to crash me. Just a warning!

Unfortunately, this sort of story is still far too common in medicine even though there is increasing awareness that it happens and that women are disbelieved or not listened too.

I don’t think it is a coincidence that LC mostly effects women and is written off a psychological even when the flip side of the coin is that men are more likely to die from the initial infection.

It is a bit disappointing to see posters go down that route on MN - where the vast majority of posters are other women.

I know someone who claims to have long COVID. Never socialises indoors, insists on wearing a mega mask indoors at all times, orders meals on deliveroo, claims to be unable to function because of brain fog so doesn't work(but curiously has no problem with regular international travel).

They're clearly unwell but I don't think in the way they believe. Sadly I think despite being young their life is over

I can't see why brain fog would make it impossible for someone to book a hotel, book a flight and then take the flight to the hotel.

I think it's more that they refuse to be inside an office but they are happy to be on a Boeing 747 several times a year

I'm sure they believe they have some extra special condition but I'm equally sure they're just common or garden neurotic

It's not really my business but I do think it's pretty bad that their life will be ruined by the cultists bedding in this mindset

Still going through this thread so only up to this one…long covid is real. People who have developed this condition are physically ill. There are over 200 symptoms associated with the condition and it can affect every single organ and system in the body. It. Is. Real.
I saw people who were marathon runners who ended up not being able to get out of bed.
Doctors, nurses, AHPs and other medical and health service professionals who were no longer able to work because of the brain fog.
it. Is. Real. It has destroyed peoples lives and we - as in the medical world - gave them services to help, then decided that it didn’t exist any longer and took them all away. And I’m so sorry for that.

I'm sorry but I think it's normal post viral illness coupled with psychiatric disorder and I don't think it helps people who think they are suffering from it to shut down alternative views

What makes you the expert against all the millions of peer reviewed papers that state otherwise?

l think there’s more papers been published on LC than anything else.

Even if there are now hundreds if not thousands of papers showing physiological changes which back up the symptoms people are complaining of?

I’m sure all the teams of people working on trialling cures for LC would love to know how persistent viral reservoirs, or depleted immune cells, or unusual signalling pathways or damaged mitochondria or microclots are psychological.

I have had post-viral syndrome and now I have long covid, @Pavementworrier, and I can promise you there is NO comparison. I can’t walk more than 30-40m without using a walker, so I can sit down for a rest. Walking back from the downstairs loo leaves me breathless. I ache all over, and wake up exhausted, even if I lie in until late morning. But when I had post viral illness, I could still function - cook a meal, study, socialise - and I recovered. I’ve had LC for years and am getting worse not better.

I am having regular physio with someone who is experienced in treating people with long covid, so I don’t think I can be accused of not wanting to get well.

Come and live in my body for a day or two and tell me it’s all in my head.

Even if it is, what, exactly, makes you so sure that a 'normal post viral' illness isn't real and debilitating?

As I said earlier, my mother is a doctor. She sees loads of patients, reads the research, and she thinks it's very real. How and why are you better placed to judge?

Absolutely your brother is ill. I have had covid 5 times, my health and mental health is shot, it gave me high blood pressure, lungs that can’t cope with exercise I cough like someone who is on 40 woodbines a day, I have depression and tiredness LongCovid is certainly a thing

‘Alternative views’

Makes me want to vomit. Some non person giving their opinion on something they know nothing about.

I couldn’t do those things. My brain isn’t clear enough and would just start closing up.

Except she clearly isn’t there for him as he does need her.

Thank heavens the research scientists have made concrete progress on CFS/ME - which includes Long Covid.

https://precisionlife.com/longcovid-mecfs

Not only has it been scientifically proven to be a physical illness, they are now starting to dig into the bio markers for different types and also matching the medications that might fight each type.

But it's not necessarily constant for everyone, as I understand it, it comes and goes.

There are currently no tests for CFS/ME available on the NHS. Currently, it is a diagnosis of exclusion. When they can’t find a vitamin deficiency or cancer or anything else that causes the very real symptoms, it’s into the CFS/ME basket you go. CFS/ME is likely many distinct illnesses that we are still getting to grips with identifying
https://precisionlife.com/longcovid-mecfs

this seems to indicate that

No. That’s outdated thinking from a decade ago.

That’s really poor maths on your part. That’s not how probability works.

PP said 10% of covid 19 infections lead to long covid. That's seems so obviously and outrageously wrong, and I can't see any issue with @everanewbie 's rough rebuttal (but please - genuinely - do explain why I'm wrong if I am)

Except that cancer is sneaky and often the scans do NOT pick up on it until it is stage 4 and terminal. Especially cancers that don’t grow in tumourous masses. But because we believe in cancer, they have developed and the NHS are trialing blood test ( Galleria) that look at DNA fragments to be able to spot cancer before it gets really invasive.

It sounds like very attention-seeking behaviour. People who are really ill are generally too tired or preoccupied with pain or whatever to bother talking to all and sundry about it. They certainly don't get angry if you haven't messaged about an appointment quick enough.