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.

This is what l found, They made me much worse. Actually the Chronic Fatigue clinic made me much worse too.

l don’t want any of that shit. I’m desperate to go for a long walk and meet my mates.

There are fuck all benefits to this illness. I’m desperae to go on holiday, go visiting, do anything really.

Exactly this. A friend of mine "diagnosed" with ME some years ago, now accepts that it's actually part of her genuine, and complex, psychiatric situation. So she needs help and support, but it is for her mental health.

I have a friend with long covid whose NHS doctors have said she has cognitive effects/brain damage from the virus equivalent to a traumatic brain injury. Absolutely not a person who makes a fuss and likes the attention - quite the opposite.

MS, Parkinsons and MND are also neurological and have been around for a long time and we're only at the very beginning of figuring out ways to treat those.

Likewise Myasthenia. They are still discovering new tests/ antibodies that cause it and treatments are still fairly rudimentary

Exactly. And yes I agree, as someone who's had three concussions, and know just how debilitating they are - the research is now showing that treatment for TBI and concussion can be potentially used for severe Long Covid as my understanding is that they are pretty similar.

It's likely people say it's the equivalent of what might have been called hysteria before it was relablled something like Functional Neurological Disorder (FND).

Of course, trauma can certainly cause physical symptoms and I remember reading the brilliant book "The Body Keeps Score" by Gabor Mate that is all about the impact of trauma on the body.

But sometimes things like viruses and more obvious physical injuries can result in inflammation and symptoms that are absolutely real (and not just "psychosomatic" as the term used to be).

Exactly this. So much ignorance on this thread. But I worry -
so many of you are going to be affected by this..sorry!

Long Covid is basically a post viral syndrome. Certain systems in the body are affected/damaged. Particularly the nervous system which affects our ‘fight and flight’ response. So you get stuck in a stressed state and the body Just gets no respite or rest.

This won’t show in scans.

There’s also an inflammatory response- this can cause issues in the lungs. X rays will be clear as they don’t test for inflammation.

There’s damage to the mitochondria- the cells which generate energy. This causes fatigue. You can’t generate the energy you used to and go anaerobic very quickly.

Covid can cause micro clots in the body and viral persistence. Research has shown it can reactivate old viruses such as Glandular fever.

The naysayers on this thread sound so ill educated that I can’t even be bothered to engage…

But OP you should be thoroughly ashamed of the way you are dismissing your brother. Astounding ignorance and lack of empathy.

The most common age group with Long Covid is women 45-55. So good luck!!

And no we don’t want to be ill. I used to run 30 miles a week. Now walking the dog tires me. But I know that there are many worse than me. Type A busy, active people are more likely to be affected.

This isn’t going anywhere. There’s no cure. And each Covid infection raises your risk. go and educate yourself as it’s a real risk for many in the future.

Oh and love and strength to all those impacted by this. Apparently cancer sufferers have a better quality of life. I can attest to that…

Well this thread has been an eye opener for a variety of reasons.
Clearly the op knows their brother better than posters on here. There will be a picture.
I agree with certain posters on here that there are no definite yes or no’s. People can be very ill. People can swing the lead.
There is a lot of misinformation on here presented as fact- by posters who claim to be ‘experts’ in more than one field.
My sympathy (as someone with an autoimmune disease that took a long time to be diagnosed) is with those who continue to be unwell with no answer in sight.
I wish you peace x

This.

I have long covid. I can only stand for a few minutes - long enough for a shower - and can manage to walk around the house. When we went down to Cornwall for my FIL’s funeral, I needed assistance on the plane and train journeys, and a wheelchair at the hotel and the funeral - it is horrible being so disabled.

I was turned down by the long Covid service in Scotland, but I am using my adult disability payment to pay for private physio - I’ve been doing the exercises for almost a year now, and I don’t feel any better - if anything, I’m worse.

I don’t ’participate’ in online long covid communities, but I can absolutely understand the need to find support with this horrible condition - especially when I see people who seem to think sufferers are making it up or choosing to be unwell. I’d love to be able to cook meals, go to the shops or the library, do some cleaning, but it is impossible.

If I do do something more than the basics, I pay for it for days. If I get ill, even with something mild that I would have shrugged off before I had covid, it sets me back so far. I have lymphocytic colitis, so basically, if the condition flares up, my large intestine gets inflamed and I get awful diarrhoea. I recently had my first flare since having Covid, and it lasted for over two and a half months, and because my body was trying to deal with the inflammation, my general condition got so much worse.

It is a real illness, and it can ruin lives - I have very little life now - I sit in my chair, and once a week, I go to a knitting group - that is pretty much all my life consists of. I do my best to be happy about what I do have, rather than bitter about what I’ve lost, but it isn’t always easy.

My mother is a doctor and when I had covid, was absolutely firm not to go back to anything close to a normal level of activity until I was well enough that I could forget I'd ever had it.

Her LC patients are overwhelmingly fit, active, middle-aged women, and she believes that trying to resume sports and regular levels of activity too soon is a major factor.

She also believes that LC is very, very real.

Great advice from her. I definitely tried to run when I wasn’t better and that didn’t help. I also have (or used to have) a physical job and a dog to walk. I should have rested.

That’s my advice - don’t mess about with Covid even if it feels mild. It could be doing damage under the surface that you can’t see.

My acupuncturist also said he had never seen a lazy person with either chronic fatigue or long Covid. It’s normally those used to pushing themselves. A lesson for us all.

Yes it does.

Hysterical women I’d imagine.

Live my life for a few days, and then tell me I’m hysterical, @RafaistheKingofClay.

Unless you are being tongue in cheek, it’s rather cruel to read accounts from long covid sufferers and then call us hysterical.

Pretty sure that was tongue in cheek, based on @RafaistheKingofClay's other posts on the thread.

Sorry it was tongue in cheek @SDTGisAnEvilWolefGenius I should have been aware of how that would come across to people who have LC.

I am sorry you are still so unwell.

Sorry for not getting that, @RafaistheKingofClay.

My previous job involved working with long covid services. It’s real, it’s debilitating, it destroys lives and patients are being abandoned as the services are closing. Believe him, support him. He’s got enough people telling him that he’s making it up without you joining in.

Not at all. Absolutely my fault. Should engage brain before posting.

Oh and there’s fuck all treatment for it.

I was the picture of perfect health until my 2nd pregnancy 30+ years ago when I ended up with kidney failure and after the birth long term urological issues - over the years many other physical issues developed which were never really investigated but individual things treated in isolation
I suspected an immune or connective tissue disorder but no one would ever listen
I was eventually diagnosed with long covid as I became much worse after 3 bouts of Covid and the vaccines made it worse
Not sure why that rather than ME, fibromyalgia, CFS etc but one thing I can guarantee it’s it’s far more physical and neurological than psychological
Fast forward to 2025 and severe vitamin deficiencies and allergies were diagnosed - treatment helped quite a lot
Now they are considering Ehlers Danlos syndrome as a possibility - neurological and rheumatology consultants are starting to listen but I’m also 60+ and starting with the wear and tear side of life too!
I have always worked and currently manage 2 PT jobs which equate to more than full time hours as need the flexibility to manage my exhaustion and bank energy for when I need it
Im not really sure of how this relates to original convo but I did get linked in with a long Covid support group via the NHS and we shared tips, but there was a huge disparity between symptoms and how badly people had been affected
The most I hope for is more understanding of all these conditions as it’s easy to be passed off and dismissed and ignored - I know there’s no ‘cure’ it’s more about management of condition and symptoms but fed up of being made to feel like it’s all in my head when it’s not!
I started with a bad cold over Xmas that then went on my chest over new year - made to feel like I’m being a hypochondriac by family n friends - got a GP appointment today to be told that I’ve got pleurisy and if steroids and antibiotics don’t kick in soon need to head to A and E as high risk of pneumonia
Still did some WFH today

As for advice on your brother, I can understand he's not feeling well but I think it's fair for you to want to talk about other subjects too, particularly the conversations about your aging parents. Just because he's ill, it doesn't mean that all your conversations should be about long covid.