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.

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.

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.

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.

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.

I put them on at the beginning.

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

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

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.

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.

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%..

Oh yeah, absolutely.

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.

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

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...

This one Relevantnow

It won’t let me copy you in properly!

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

Thanks very much indeed x

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

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?

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.

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.

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.

This was published yesterday- so 10% is likely an understatement at this point,

”Pooled prevalence of Long COVID was 18. 0% (95% CI: 12. 5-23. 5%, I = 9. 8%) among survivors followed for ≥6 months. Fatigue (41. 0%, 95% CI: 33. 2-49. 4%) and dyspnoea (22. 5%, 95% CI: 15. 6-29. 8%) were the most common symptoms. Female sex (OR = 1. 52, 95% CI: 1. 25-1. 92) and prior hospitalization (OR = 2. 35, 95% CI: 1. 98-2. 90) were significant risk factors. High heterogeneity (I > 90%) was noted. Conclusions: Long COVID affects over one-fifth of SARS-CoV-2 survivors, with fatigue and dyspnoea persisting in many. Female sex and severe acute infection increase risk. Standardized definitions and longer follow-up are needed.”
https://magazine.ingentium.com/2026/01/01/long-covid-prevalence-and-risk-factors-a-systematic-review-and-meta-analysis-of-prospective-cohort-studies/

I suspect that your OT isn’t saying do colouring instead of what you already do..which is looking for info to help cope with long Covid and maybe have a hope of recovering. It makes perfect sense when in survival mode you will be focused on how do I survive this?

The OT is likely asking you to add colouring to what you already do or to substitute some of the research with colouring as it is an activity that requires the use of the creative side of the brain, as well as putting demands on executive functioning and decision making parts of the brain. None of which you need to do when in receive and share information mode. Colouring also takes more physical energy than sitting or lying in bed looking at a screen.

I completely understand how the two are incomparable.

Hmmm no it’s because it’s a low cognition past time.

l’ve crashed twice unravelling knitting. So she suggested this instead.

This checks with the new info that CFS/ME & Long Covid are probably a cluster of similar symptoms caused by many distinctly different illnesses.

This isn’t news, after all we went from cancer is cancer to naming cancer by where it is showing up to actually realising there are dozens if not hundreds of different types of cancer and yes you can get breast cancer in your brain, and yes some cancer is caused by pollution or radiation, but other cancers are caused by a virus or eating bacon.

I tried and failed colouring as part of TBI & PCS rehab, and I beg to differ, it’s not a low cognition pastime. It uses different parts of the brain, but that’s no good if those are the parts that are damaged whether by injury or by a neurological condition like CFS/ ME or LC