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.

YANBU to feel that Long COVID can be a bit of a con. I'm not saying that it is in all cases, but let's just say that the people I know who have it are exactly the people I would expect to have it. I think that you are being somewhat unreasonable about your parents. I get where you're coming from because it is a bit similar in my family, but actually I don't think it's reasonable for elderly parents to expect their kids to exhaust themselves looking after them. If your brother doesn't want to do that he doesn't have to and neither do you. That is what the care system is for.

https://www.nature.com/articles/s41579-022-www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition

For those doubting the 10% figure. Yes that’s scary but it’s the official estimate from the WHO.

They even estimate it at 10-20%. And Covid is constantly circulating and each infection increases your chances. So you do the maths. Yes that’s millions and millions of people that will be affected and this will grow and grow.

It’s also so sad that young children get this. Lives ruined.

www.who.int/europe/news-room/fact-sheets/item/post-covid-19-condition

It's 200 different symptoms by this definition? Not exactly a reliable diagnosis if the only thing linking them is that the person had been infected with Covid (which basically everyone has). I worrry it simply means other health conditions are being overlooked and all lumped in as LC.

I think that’s the issue though - it affects so many different systems in the body. Other causes can be ruled out.

They told me it was. It’s lower cognition than unravelling knitting though!

I don’t think it is low. All the decisions about colours. That’s high thinking to me.

That is a possibility if people just assume all their symptoms are down to their recent Covid infection or the doctor doesn’t run routine blood tests to explore other causes.

Given what we know about the virus though it isn’t inconceivable that it could cause that many symptoms across a population. If I remember rightly there was a theory right back in 2020 that LC was actually 4 different syndromes. One of which was post viral the others were damage caused by the virus. I wonder whether it would be either going back to that and grouping the symptoms rather than just giving an umbrella term with a huge array of symptoms.

How would that be differentiated from things like autistic/adhd burnout?

I'm struggling hugely with motivation currently, and your description of not having the executive functioning to draw together all the things you need and then make decisions about colouring sound just like me currently.

But in my case it's due to total emotional burnout from dealing with severe issues with my autistic child. Along the way I've also been diagnosed as ND. It's really common for ND burnout to happen in mid 40s. Which is also apparently the riskiest time for LC. I've had covid so are these specific tests that would pick apart the difference?

Wrong diagnoses can be really problematic.

I don’t know.

But my brain was fine for 58 years.

Have you tried acupuncture? thats what works for me. It’s gentle and no drugs. The needles should be fine and you occasionally feel them going in but the benefit i get is worth it.

Like all therapists you get good ones and bad ones, just like doctors, hairdressers plumbers! So it took me a couple to find one i liked who made big improvements to me. Its japanese acupuncture im currently on. It’s a long haul though. Kids are cheaper at my acupuncturist.

Mainly with LC you would have lots of other symptoms too.

To be fair I’ve had ADHD burnout before LC and they are different in that with LC I had intense fatigue for weeks and weeks (on a whole other level - but not helped by rest) . But I also had chest pain, an inability to do any exercise without a huge crash I had symptoms of MCAS which get worse with certain foods. The brain fog and lack of motivation is the only real crossover for me (plus fatigue but that ramped up).

What I will say is that I believe that people with Autism and ADHD have already hammered their nervous systems throughout their lives so there is some thinking that we may be more prone to both autoimmune conditions and LC. As LC further damages the nervous system. The body keeps score etc..!

Hence the prevalence in women. And women of a certain age.

It’s obviously important that people are diagnosed correctly (though there no real diagnosis tool for LC) they can rule out other illnesses/ conditions by running blood tests/ doing scans etc.

Acupuncture really helped me too.

Re things showing up on bloods, i asked my GP (and then my new GP after i changed practice) to check my cortisol levels and both refused.

So maybe things would show up in bloods. Maybe not. But if the GPs won’t do the tests we will never know.

There is no department that deals with ME / Long covid in scotland where i am. Hence you never get experts just general practitioners who may or may not know about this condition. There is therefore presumably no continuity or best practice.

You can get referred to the Integrated Services (what used to be called the Homeopathic Hospital) at Gartnavel if GPs know about it and eant to refer, but the waiting list is over a year long, maybe longer now. Or maybe things have changed since the announcement that theyd look into long covid, i dont know and admit im not up to speed.

But that also is an issue for ME sufferers because if GPs are now supposed to refer us somewhere and only refer new patients not old ones (who’ve been suffering for decades and basically told to go away nothing they can do and nobody’s telling us to come in for an update on what’s happening) then that’s a whole demographic missing out on being referred.

it’s a shit show.

Acupuncture crashed me twice. As did homeopathy.

It’s so hard to find things that work! I know everyone responds differently.

I can't believe someone with such ill informed views is able to hold down a job that pays forty five percent tax.

Thanks for all your suggestions @ArseInTheCoOpWindow I will try them after another awful night!

There’s also this that l got off the NHS Scotland website.

https://www.recoverynorway.org/

I'm so sorry but you obviously don't understand long covid or it's effect I have had this 5 years I was one of the first and along time in icu I'm left a mess mentally and physically, ptsd anxiety and long term fatigue has distorted my life ive had alot of imput mentally and physically to no avail, be supportive of him not vice versa please man is going through hell

Thanks - this is all so interesting.

im sorry to hear that.

i got told i would get worse before i got better and i just needed tiny treatments as my body couldn’t take anything more.

The therapist had epstein barr and me/cfs herself so she knew all about it. Not all therapists know how bad it is. Yours probably tried to help you as much as possible but did too much.

If i go to a new therapist i always ask them to do hardly anything per treatment as i can’t handle it if you do too much. i’d rather have small positive tweaks from three carefully placed relevant needles that provide some benefit each week than get my moneys worth so to speak from twenty needles treating all my issues at once as that would not help me in fact it would crash me.

I also diluted the doses of homeopathy medicines by making up the remedy in water to the number of ml it’s supposed to be, taking one teaspoon from the glass and putting into another empty glass and making it up to the ml it’s supposed to be with water again. (throw away the first glass). And only after i was sure it was safe after a few doses had been ok would i take the full dose.

i was so weak. it was ridiculous. im come so far but i remember im not right as soon as i reach my limit and i get symptoms again. it sucks. i can seem to escape it.

It’s possible that the guy is very unwell but also doing bugger all to actually help himself, and also for the OP to find it draining and for sympathy to wane after all these years . Especially when she’s the one left to pick up all the slack. I feel very sorry to read about the awful experiences of some posters here but I feel a lot of people are probably projecting when the truth is the OP knows her brother and likely to have a better grasp of what’s going on with him than any of you.

Does anyone have any experiences, good or bad, with any private occupational therapy services for long covid? My mum has been looking at trying one as she hasn't had much help from the NHS.

Yes, l have she was incredibly helpful. She was the one who put me in the road to recovery.

I thought the more dilute the homeopathic remedy the more potent it was?