Page 4 | The long covid sink hole

Cortrach · 2026-01-02T00:00:09+00:00

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.

ArseInTheCoOpWindow · 02/01/2026 23:14

CurlyhairedAssassin · 02/01/2026 23:00

You see this is what people have trouble with understanding. You say you can't collect and co-ordinate pencils and colouring books enough to do colouring. Yet you can do plenty of researching about long covid on the internet, and gather your thoughts enough to present here. The two states don't seem to go together?

Even if your symptoms fluctuate, and I understand that they can, when you are feeling well enough to do your research on the internet and discuss your thoughts on forums, why have you not tried to follow your OT's advice?

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Because it’s easier and less effort to pick up a phone. I used to be a super motivated person. And also using a phone is using and focusing on one thing.

And researching is quite easy.

Every day l want to try and colour. But l just get tired or the effort of co ordinating it all puts me off. This is what people don’t get. Lack of motivation is the very worst thing about brain fog.

Sometimes l get flashes of it. I walked past my noise reducing headphones yesterday and thought they needed charging. They’ve needed charging for ages. Then l went to the loo. Then l just carried on with my AirPods because it was easier. Headphones still not charged. Too tiring to co ordinate. I read a description of brain fog once. It was trying to think is like trying to lift an iron bar with your brain.

Writing isn’t as tiring.

SugarandSpiceandAllThingsNaice · 02/01/2026 23:08

FrodoBiggins · 02/01/2026 22:39

They said "You’ve a 10% chance of getting long covid with every SARS COV2 infection you get."
I presume they didn't know the age, gender and medical history of the person they were referring to.

But even if you (generously imo) read your additional words into their assertion, I'd like to see the data which show that 10% of Covid infections in middle age women lead to Long Covid.

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They were assuming sure, based on this being a mothers forum with over 90% of posters being female in a country where mothers tend to be over 30 and most of the ones in here tend to have older DC as they have the time to be posting.

https://link.springer.com/article/10.1186/s12889-025-22987-8
“Among adults reporting COVID-19, 20.9% (95% CI, 20.5–21.4%) had ever experienced long COVID. An inverted U-shaped association was observed between long COVID risk and age, with the highest prevalence (23.5%) in the 45–54 age group. Long COVID was more prevalent among women (aPR, 1.40 [95% CI, 1.34–1.47])”

https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2829454
“Symptom frequencies stratified by sex are provided in Table 2. A significantly higher proportion of females (1845 [21%]) compared with males (532 [16%]) had long COVID at the analysis visit (Table 3). The mean and median long COVID indices among long COVID–positive participants were slightly higher among females (mean [SD], 16.5 [4.7]; median, 15 [IQR, 13-20]) than among males (mean [SD], 15.9 [4.3]; median, 15 [IQR, 12-18]). The distribution of long COVID subphenotypes by sex is shown in Table 3. ”

the WHO if you’re interested puts baseline rate at 6%, saying also that being females middle aged or older face higher risk with further links to more studies
https://www.who.int/news-room/fact-sheets/detail/post-covid-19-condition-(long-covid)

The figures vary by study, but the latest on risk for women aged 30+ does indicate at least a 10% risk.

RafaistheKingofClay · 02/01/2026 23:01

https://www.york.ac.uk/news-and-events/news/2024/research/long-covid-fog/

This has 9%. But with wide variation in studies.

https://www.who.int/news-room/fact-sheets/detail/post-covid-19-condition-(long-covid)

The WHO has it around 6%

https://health.mountsinai.org/blog/five-years-post-pandemic-heres-what-weve-learned-about-long-covid/
This is about 8.5% for women and 5.2% for men.

https://academic.oup.com/ofid/article/12/9/ofaf533/8244677

This is a different metric but alarming in a whole different way.

The numbers are alarming. The number of people with long covid globally is going up and up and up. As was predicted in 2020/2021. It is a problem. And probably one we should have been doing something about before now.

New research examines the risk of developing Long Covid

A new study carried out by researchers at the University of York suggests that on average 9% of people who catch COVID-19 may be at risk of developing Long Covid.

https://www.york.ac.uk/news-and-events/news/2024/research/long-covid-fog/

CurlyhairedAssassin · 02/01/2026 23:00

ArseInTheCoOpWindow · 02/01/2026 22:04

Mmmm to an extent. But mines never ever fully clear. And l would struggle co ordinating it all.

My OT told me do do colouring. I have pencils, books, a portable table, I know where they all are, My brain is too tired to collect and co ordinate them. I can’t explain. The effort of it is too huge.

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You see this is what people have trouble with understanding. You say you can't collect and co-ordinate pencils and colouring books enough to do colouring. Yet you can do plenty of researching about long covid on the internet, and gather your thoughts enough to present here. The two states don't seem to go together?

Even if your symptoms fluctuate, and I understand that they can, when you are feeling well enough to do your research on the internet and discuss your thoughts on forums, why have you not tried to follow your OT's advice?

ArseInTheCoOpWindow · 02/01/2026 22:53

This is it.

Also Alangordon on FB and insta is worth following.

It doesn’t always have to be about fatigue. Dizziness and other stuff are part of it. It’s about making the brain feel safe to do stuff again

RelevantNow · 02/01/2026 22:48

ArseInTheCoOpWindow · 02/01/2026 22:46

This one Relevantnow

It won’t let me copy you in properly!

Ive got another good video. Let me try and find it

Edited

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Thanks very much indeed x

ArseInTheCoOpWindow · 02/01/2026 22:46

ArseInTheCoOpWindow · 02/01/2026 00:39

These might help.

https://cfsrecovery.com/

And this was mindblowing.

https://www.coffi-collaborative.com/post/coffi-consumer-researcher-online-seminar-iv-where-lived-experience-and-science-meet

You need to be nicer to him. The fatigue is unreal.

This one Relevantnow

It won’t let me copy you in properly!

Ive got another good video. Let me try and find it

CurlyhairedAssassin · 02/01/2026 22:45

Delatron · 02/01/2026 15:57

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…

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X rays would be clear but wouldn't blood tests show high levels of CRP etc? Higher cortisol? No-one's suggesting that x rays should be showing something...

RelevantNow · 02/01/2026 22:42

ArseInTheCoOpWindow · 02/01/2026 22:05

I put them on at the beginning.

A somatic therapist would be helpful. I think there’s a company called Gupta too.

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Any idea approx what time? You have a lot of posts on this thread so it would be helpful to know which one to open as I have checked a few and can’t find the info! Thanks a lot x

FrodoBiggins · 02/01/2026 22:39

SugarandSpiceandAllThingsNaice · 02/01/2026 22:30

However, they were likely referring to middle aged women who are at higher risk by saying “you”. For our demographic it is closer to 10% than the baseline average for all ages, both sexes,

plus its lazy maths to assume 3 infections per person and then go let’s say 20%..

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They said "You’ve a 10% chance of getting long covid with every SARS COV2 infection you get."
I presume they didn't know the age, gender and medical history of the person they were referring to.

But even if you (generously imo) read your additional words into their assertion, I'd like to see the data which show that 10% of Covid infections in middle age women lead to Long Covid.

ArseInTheCoOpWindow · 02/01/2026 22:30

CarterBeatsTheDevil · 02/01/2026 22:22

I believe you. I don't know how it feels because I don't experience it, but I do believe you. I just think that it might not be the same all the time for everyone who has CF or LC.

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Oh yeah, absolutely.

SugarandSpiceandAllThingsNaice · 02/01/2026 22:30

FrodoBiggins · 02/01/2026 21:54

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)

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However, they were likely referring to middle aged women who are at higher risk by saying “you”. For our demographic it is closer to 10% than the baseline average for all ages, both sexes,

plus its lazy maths to assume 3 infections per person and then go let’s say 20%..

CarterBeatsTheDevil · 02/01/2026 22:22

ArseInTheCoOpWindow · 02/01/2026 22:04

Mmmm to an extent. But mines never ever fully clear. And l would struggle co ordinating it all.

My OT told me do do colouring. I have pencils, books, a portable table, I know where they all are, My brain is too tired to collect and co ordinate them. I can’t explain. The effort of it is too huge.

Show quote history

I believe you. I don't know how it feels because I don't experience it, but I do believe you. I just think that it might not be the same all the time for everyone who has CF or LC.

CurlyhairedAssassin · 02/01/2026 22:17

CassandraWebb · 02/01/2026 11:42

Yes all the people I know with long COVID were highly driven impressive people
The disconnect between what their body will let them do and who they are is huge

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Perhaps their body was never really able to let them do what they did, it was lal just conditioning and cultural expectations or whatever, and it all just finally caught up with them - COVID was the straw the broke the camel's back. And they blamed COVID for everything when really COVID was just the catalyst.

SugarandSpiceandAllThingsNaice · 02/01/2026 22:16

ArseInTheCoOpWindow · 02/01/2026 21:32

‘Alternative views’

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

It’s just like the “alternative facts” thing that trump came up with as a new name for “false claims”

ArseInTheCoOpWindow · 02/01/2026 22:05

RelevantNow · 02/01/2026 21:55

Do you have any resources on brain training? My daughter has had terrible digestion issues since Covid. We are now under private gastro and have tried everything. But she is getting worse. I do think we need to find a gentler method to manage her stress, dizziness and awful stomach issues a different way. Conventional medicine isn’t helping. Thanks.

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I put them on at the beginning.

A somatic therapist would be helpful. I think there’s a company called Gupta too.

ArseInTheCoOpWindow · 02/01/2026 22:04

CarterBeatsTheDevil · 02/01/2026 21:40

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

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Mmmm to an extent. But mines never ever fully clear. And l would struggle co ordinating it all.

My OT told me do do colouring. I have pencils, books, a portable table, I know where they all are, My brain is too tired to collect and co ordinate them. I can’t explain. The effort of it is too huge.

SugarandSpiceandAllThingsNaice · 02/01/2026 22:00

Miranda65 · 02/01/2026 14:58

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.

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Then she was initially misdiagnosed. It happens. People with ME/CFS being diagnosed with depression, and people with depression being diagnosed with ME/CFS.

When symptoms overlap, there is risk of misdiagnosis.

EvangelicalAboutButteredToast · 02/01/2026 22:00

I think the pertinent question would be; has he ever been well and if he has what happened in his life before he started self diagnosing health conditions? I think the answer will be there.

RelevantNow · 02/01/2026 21:55

ArseInTheCoOpWindow · 02/01/2026 00:04

l have LC. It’s exhausting. I couldn’t speak to anyone for a year.

I found relief through brain retraining. Once you understand limiters and how to calm your nervous system it really works. Once you look at the poly vagal theory it all comes together.

Edited

Do you have any resources on brain training? My daughter has had terrible digestion issues since Covid. We are now under private gastro and have tried everything. But she is getting worse. I do think we need to find a gentler method to manage her stress, dizziness and awful stomach issues a different way. Conventional medicine isn’t helping. Thanks.

CurlyhairedAssassin · 02/01/2026 21:55

Cortrach · 02/01/2026 01:04

@AnneLovesGilbert yes , he resents everything, that's what's so hard. He's angry at everything, everyone, so I can't talk to him normally, everything I say has to be prefaced with "of course I know your life is hard with your condition" before I even get to chatting about mum falling over or whatever. If I don't do that he gets angry and before I know it we're back on the long covid. I try to remember when his appointments are and message him when they happen because I know he doesn't do much else but if I miss messaging after one he gets really cross.

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.

SugarandSpiceandAllThingsNaice · 02/01/2026 21:54

Soontobe60 · 02/01/2026 12:20

Cancer is something that can be seen in X-rays, blood tests, scans. It cannot be fabricated. Comparing the 2 conditions is just ridiculous.

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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.

FrodoBiggins · 02/01/2026 21:54

SugarandSpiceandAllThingsNaice · 02/01/2026 21:47

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

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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)

SugarandSpiceandAllThingsNaice · 02/01/2026 21:47

Everanewbie · 02/01/2026 11:42

@RafaistheKingofClay it doesn't seem to happen to working class builders or joiners, does it?

Andy by your workings, lets say an average of 3 infections per person, allow for some duplications, 20% of the population has Long COVID? C. 14 million people? I call BS.

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

SugarandSpiceandAllThingsNaice · 02/01/2026 21:43

MurkyMo · 02/01/2026 11:24

Isn't the latest thinking telling us that long Covid is mostly a psychological disorder, similar to fibromyalgia? Symptoms are real, yes, but the cause is not physical.

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