Long Covid

[wtfftw]

This is a way of thinking about it I haven't encountered before and makes me wonder if I know anything about immunology at all. The consequences of it would surely be that the cell damage should be detectable though, assuming we could examine the cells closely enough, and that the reason post-viral fatigue isn't visible on tests is because they aren't looking at the cellular level (though cellular action/inaction could potentially have macro consequences, so perhaps still odd that no tests pick it up).

This sort of stuff? Mitochondrial dysfunction and the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
Brain fogged layperson tho so might be different cells, different damage blaaah. Some stuff is being looked at tho.

 

[kabbes]

Good point.
kabbes ? Can you ask kabbess?

I will but in the meantime, my understanding is that this stuff is indeed detectable but you’re going to need to biopsy exactly the affected tissue and then have it investigated by experts who know what they’re looking for using the right kind of equipment. So in theory yes but in practice not so much. What we need is one of those Star Trek scanners that can just go boop boop and list off every piece of cellular abnormality

By the way, the medical diagnostics we currently perform are the equivalent of taking a car to a garage where they , I dunno, taste the bonnet or tap on the exhaust pipe or something. Which is fine — its all we’ve got and it catches the most detectable issues (although maybe tasting a bonnet isn’t a great metaphor for that…). The problem arises with medics that have been conditioned by training into thinking that these diagnostic tests are exhaustive then declaring you have nothing wrong just because they don’t show anything. Whereas in truth, the set of things detectable with these diagnostics is a tiny subset of disorders. Mostly, we don’t even know the disorders, let alone what diagnostics to use, let alone how to obtain the diagnostics.

 

[Brainaddict]

By the way, the medical diagnostics we currently perform are the equivalent of taking a car to a garage where they , I dunno, taste the bonnet or tap on the exhaust pipe or something. Which is fine — its all we’ve got and it catches the most detectable issues (although maybe tasting a bonnet isn’t a great metaphor for that…). The problem arises with medics that have been conditioned by training into thinking that these diagnostic tests are exhaustive then declaring you have nothing wrong just because they don’t show anything. Whereas in truth, the set of things detectable with these diagnostics is a tiny subset of disorders. Mostly, we don’t even know the disorders, let alone what diagnostics to use, let alone how to obtain the diagnostics.

This expresses exactly what I've been thinking lately about the state of medical knowledge, and all the people I know with undiagnosed/undiagnosable/untreatable problems. While we can do fancy things with expensive machines to measure the human body, what is happening at a GPs or normal hospital appointment is so basic that hopefully one day it will be looked upon as borderline uncivilised.

 

[Elpenor]

I remember reading somewhere - maybe here - that in the US GPs or their equivalent have more freedom, and hence have been quite creative in exploring new ways of treatment of long covid, whereas GPs in the UK have to follow specific pathways so are a bit more limited in what they can do.

 

[ska invita]

I will but in the meantime, my understanding is that this stuff is indeed detectable but you’re going to need to biopsy exactly the affected tissue and then have it investigated by experts who know what they’re looking for using the right kind of equipment. So in theory yes but in practice not so much. What we need is one of those Star Trek scanners that can just go boop boop and list off every piece of cellular abnormality

By the way, the medical diagnostics we currently perform are the equivalent of taking a car to a garage where they , I dunno, taste the bonnet or tap on the exhaust pipe or something. Which is fine — its all we’ve got and it catches the most detectable issues (although maybe tasting a bonnet isn’t a great metaphor for that…). The problem arises with medics that have been conditioned by training into thinking that these diagnostic tests are exhaustive then declaring you have nothing wrong just because they don’t show anything. Whereas in truth, the set of things detectable with these diagnostics is a tiny subset of disorders. Mostly, we don’t even know the disorders, let alone what diagnostics to use, let alone how to obtain the diagnostics.

But surely They would be doing the most thorough biopsy etc, at least on a limited and concentrated level?

 

[kabbes]

Alright, I have an answer. You can test for generic senescence quite easily, apparently, with something called beta-galactosidaise (?) But you have to do it in a Petri dish — testing in mice has been done but I don’t get the impression it was in the long-term interests of the mice involved. So that means you need a biopsy of the affected cells.

That isn’t really the solution, though. Senescence is just one of the many things that the virus can cause in terms of cellular damage. Since we don’t know what viral fatigue syndrome really is, we don’t know what the damage is that is causing it, and you can’t test for something without knowing what you are testing for. It is entirely possible that we wouldn’t even have a test that could do the job. As she said, “it’s all theoretically possible but that doesn’t mean it’s actually possible.”

 

[Dogsauce]

Four weeks since testing positive and I’m constantly knackered, tight chest, brain fog, joint pains. I know this is still early but my spirit is being crushed by it. I’ve been back at work for a couple of weeks but it’s not leaving me much energy for anything else. The mrs is worse, has only managed a few hours working at home, and her job involves lots of talking to people and meetings and it’s too much just holding a conversation for so long. Fed up of this, just how you think things are improving then have a day or two feeling like you’ve been hit by a truck. Really pissed off with all those herd immunity/“let it run it’s course” cunts.

gf’s mum has been over this week, long planned to help with childcare over half term, but she’s staying another week now which is going to be really useful, although I’m worried about her being around here where cases are sky high (partly due to the false negative fiasco affecting the SW). Kids (3 & 5) are exhausting just in normal times so it’s extra hard now.

One thing that may help me is restarting my Crohns medication (I stopped about ten days before my positive test as my boss had tested positive and I’d been in close proximity in meetings) - slowly reintroducing it now, as there is suspected to be some immune stuff going on with long Covid symptoms then taking immunosuppressants (azo and biologics) might help.

I’m also overdue for a my ‘third jab’ and wondering when I should have that, reports from some people that it can also help.

 

[Brainaddict]

I know this might be difficult but if you can take more time off work please do. Some people think that being very active in the early days after covid makes it more likely you'll get long covid. Whenever you have the choice of rest or pushing through, try to rest. It's difficult to do, because it will really impact your life for a while, but you could come to regret trying to push through.

 

[BristolEcho]

I know this might be difficult but if you can take more time off work please do. Some people think that being very active in the early days after covid makes it more likely you'll get long covid. Whenever you have the choice of rest or pushing through, try to rest. It's difficult to do, because it will really impact your life for a while, but you could come to regret trying to push through.

Important advice.

 

[Brainaddict]

Been meaning to post this, which has caused some excitement on long covid forums as it seems to suggest a measurable physical pathology. Will it turn out to be the key or another dead end? I think we need to see a lot more testing of the theory before anyone can say.

Overload of Inflammatory Molecules “Trapped” in Micro Blood Clots May Cause Long COVID Symptoms

First evidence of inflammatory micro clots in blood of individuals suffering from Long COVID: This may be the cause of some of the lingering symptoms experienced by individuals with Long COVID. New research indicates that an overload of various inflammatory molecules, literally “trapped" inside i

scitechdaily.com

 

[Brainaddict]

Just a report-back from finally going to a long covid clinic. It was at Kings and is in a respiratory dept. Unfortunately they have no expertise in fatigue within the team, which considering that's the main symptom of long covid I find immensely stupid and depressing. Anyway, they did a few extra checks to see if my lungs were working okay, which I haven't heard the results from. They had an occupational therapist who gave me a few printouts about pacing. Next appointment is now February and it seems I won't hear anything about the lungs until then, though the doctor said he didn't think there was any measurable pathology anyway and he was just being cautious.

Then they sent me off to self-refer for IAPT, which I did partly cos I've never had half-arsed NHS CBT therapy before and thought it would be an experience if nothing else. But it turns out I don't have clinically treatable levels of anxiety or low mood (to be fair I think this is probably right - they correctly spotted that I'm just a bit down because my life has been forcibly altered to a fraction of previous activity level), so they're going to give me a course of computerised CBT for health conditions - though it turns out they don't have anything specific to fatigue, so it will be for pain. This just happened today and luckily I'm in a good mood so I'm just kind of chuckling at how weak it all is.

I suggested to the IAPT person on the phone that maybe they could get some course specific to fatigue (coping with, not trying to solve) as it may well continue to crop up. She was in agreement.

 

[BristolEcho]

Ah frustrating though. Ultimately pacing is the primary thing we have for fatigue it seems.

New research drug here. UK launches trial of drug to tackle fatigue in long Covid patients

 

[Brainaddict]

Yeah, I know someone who is signed up for that trial. I'll post early reports as I get them.

 

[Carvaged]

a long covid clinic. It was at Kings and is in a respiratory dept. Unfortunately they have no expertise in fatigue within the team, which considering that's the main symptom of long covid I find immensely stupid and depressing

Sad to say it but pretty much the only thing the NHS is looking at for most folks in its "long covid clinics" is the lungs. Everything else seems to require too many new tick-boxes to be created on the 'computer-says-no' device for them to handle at the moment

 

[ska invita]

Just a report-back from finally going to a long covid clinic. It was at Kings and is in a respiratory dept. Unfortunately they have no expertise in fatigue within the team, which considering that's the main symptom of long covid I find immensely stupid and depressing. Anyway, they did a few extra checks to see if my lungs were working okay, which I haven't heard the results from. They had an occupational therapist who gave me a few printouts about pacing. Next appointment is now February and it seems I won't hear anything about the lungs until then, though the doctor said he didn't think there was any measurable pathology anyway and he was just being cautious.

Then they sent me off to self-refer for IAPT, which I did partly cos I've never had half-arsed NHS CBT therapy before and thought it would be an experience if nothing else. But it turns out I don't have clinically treatable levels of anxiety or low mood (to be fair I think this is probably right - they correctly spotted that I'm just a bit down because my life has been forcibly altered to a fraction of previous activity level), so they're going to give me a course of computerised CBT for health conditions - though it turns out they don't have anything specific to fatigue, so it will be for pain. This just happened today and luckily I'm in a good mood so I'm just kind of chuckling at how weak it all is.

I suggested to the IAPT person on the phone that maybe they could get some course specific to fatigue (coping with, not trying to solve) as it may well continue to crop up. She was in agreement.

wow that sounds shit...im glad i didnt bother applying
i would like to know if i have any long term lung damage...a doctor did once listen tom y lungs with a stethoscope and was listening frock "crackliging"....didnt hear any so thats something

Kabbes post did get me worried about long term damage but i think the way i feel okay(ish) one week and then grim the next, then okayish again makes me feel if something was broken id feel shit all the time

 

[ska invita]

Four weeks since testing positive and I’m constantly knackered, tight chest, brain fog, joint pains. I know this is still early but my spirit is being crushed by it. I’ve been back at work for a couple of weeks but it’s not leaving me much energy for anything else. The mrs is worse, has only managed a few hours working at home, and her job involves lots of talking to people and meetings and it’s too much just holding a conversation for so long. Fed up of this, just how you think things are improving then have a day or two feeling like you’ve been hit by a truck. Really pissed off with all those herd immunity/“let it run it’s course” cunts.

gf’s mum has been over this week, long planned to help with childcare over half term, but she’s staying another week now which is going to be really useful, although I’m worried about her being around here where cases are sky high (partly due to the false negative fiasco affecting the SW). Kids (3 & 5) are exhausting just in normal times so it’s extra hard now.

One thing that may help me is restarting my Crohns medication (I stopped about ten days before my positive test as my boss had tested positive and I’d been in close proximity in meetings) - slowly reintroducing it now, as there is suspected to be some immune stuff going on with long Covid symptoms then taking immunosuppressants (azo and biologics) might help.

I’m also overdue for a my ‘third jab’ and wondering when I should have that, reports from some people that it can also help.

how goes dogsauce?

 

[_Russ_]

Sad to say it but pretty much the only thing the NHS is looking at for most folks in its "long covid clinics" is the lungs. Everything else seems to require too many new tick-boxes to be created on the 'computer-says-no' device for them to handle at the moment

In all fairness they have other priorities right now

 

[ska invita]

In all fairness they have other priorities right now

in all fairness you are a wind up poster, likely returner

 

[Dogsauce]

how goes dogsauce?

Muddling on, think I’m getting a bit better, still have the tiredness and brain fog, particularly if I’ve had a very active day. It’s leaf fall season at work so quite a bit of wandering about with the blower, but they have got someone in to help with this one or two days a week which is helping and gives me time to do less strenuous jobs. Generally think I’m getting better but it’s a bit up and down.

gf is worse though, just spends most of the day lying down feeling nauseous and knackered, sometimes OK in the evening to get up and do a few things. Bothers me a lot to see her so floored by this. Her work is still paying her (13 weeks full pay then goes to some insurance thing for 2/3 salary). She had a blood test yesterday and seeing the doctor on Monday. Grandmother has extended her visit by another week and a half which is good, she walks the kids into school and does a lot about the house, really appreciate the help! Before she came I was having to go into work at 7:15, then cycle home to do the school run then carry on working, which wasn‘t helping my fatigue much.

 

[existentialist]

I will but in the meantime, my understanding is that this stuff is indeed detectable but you’re going to need to biopsy exactly the affected tissue and then have it investigated by experts who know what they’re looking for using the right kind of equipment. So in theory yes but in practice not so much. What we need is one of those Star Trek scanners that can just go boop boop and list off every piece of cellular abnormality

By the way, the medical diagnostics we currently perform are the equivalent of taking a car to a garage where they , I dunno, taste the bonnet or tap on the exhaust pipe or something. Which is fine — its all we’ve got and it catches the most detectable issues (although maybe tasting a bonnet isn’t a great metaphor for that…). The problem arises with medics that have been conditioned by training into thinking that these diagnostic tests are exhaustive then declaring you have nothing wrong just because they don’t show anything. Whereas in truth, the set of things detectable with these diagnostics is a tiny subset of disorders. Mostly, we don’t even know the disorders, let alone what diagnostics to use, let alone how to obtain the diagnostics.

And - though it isn't strictly Long Covid-related, this is never more true than for psychological (or psychosomatic) problems.

 

[Oula]

I'm here to tentatively say that I think I've had a big improvement. I'm much less fatigued. Even though I had a busy half term and two very late nights, I was ok. I've still got some joint pain but much less than before and my hands are working much better. I'm cautious because I've got excited before and then the set backs have hit me hard. But I'm really feeling pretty good. Like, better than I have in a year.

 

[ska invita]

I'm here to tentatively say that I think I've had a big improvement. I'm much less fatigued. Even though I had a busy half term and two very late nights, I was ok. I've still got some joint pain but much less than before and my hands are working much better. I'm cautious because I've got excited before and then the set backs have hit me hard. But I'm really feeling pretty good. Like, better than I have in a year.

Love to hear it.
Even if there are set backs to come I feel like each positive spell shows progress down the longer road.

 

[BristolEcho]

In all fairness they have other priorities right now

Fuck off. I know I shouldn't even respond, but fuck off.

I'm here to tentatively say that I think I've had a big improvement. I'm much less fatigued. Even though I had a busy half term and two very late nights, I was ok. I've still got some joint pain but much less than before and my hands are working much better. I'm cautious because I've got excited before and then the set backs have hit me hard. But I'm really feeling pretty good. Like, better than I have in a year.

Really good to hear.

Love to hear it.
Even if there are set backs to come I feel like each positive spell shows progress down the longer road.

Absolutely. Such a mad condition when I'm saying after 14 months - "Well at least it hasn't got worse" That's my fear. Even though it's hard at the moment I do dread it getting worse too.

My partner's ADHD psychologist is also a CFS specialist and when she asked if she had any advice she replied pacing. In many ways shit, but also reassuring that we are doing the right thing.

My partner's started the pill now in the hope that it staves off the constant cycle of worsening symptoms around her period. We'll see.

Partners Mum is unhelpful at times and suggested hypnotherapy the other day. "I know it's not all in your head but....." She did a psychology degree 20 years ago and hasn't managed to accept that knowledge has moved on.

Are you all getting your flu jabs? I think you are entitled to them.

 

[Oula]

Such a mad condition when I'm saying after 14 months - "Well at least it hasn't got worse" That's my fear. Even though it's hard at the moment I do dread it getting worse too.

My brother in law has chronic fatigue following a virus when he was in his teens. His attitude, which I think is quite a good one, is that he's unlucky to have it but lucky it isn't worse.

My partner's started the pill now in the hope that it staves off the constant cycle of worsening symptoms around her period.

My symptoms have definitely been worse around my period. And my PMT had for much worse too. I've stayed taking Agnus Castus and I think it's helped.

Are you all getting your flu jabs? I think you are entitled to them.

I always get one due to asthma but the surgery hasn't contacted me about it this year. I called them and managed to book for end of November, which is much later than normal.

 

[Brainaddict]

Are you all getting your flu jabs? I think you are entitled to them.

Really? On what grounds? I tried to get one last year and my doctor told me I wasn't eligible. Was going to pay this year, which wasn't even possible when I tried last year due to shortages.

 

[BristolEcho]

Really? On what grounds? I tried to get one last year and my doctor told me I wasn't eligible. Was going to pay this year, which wasn't even possible when I tried last year due to shortages.

I know if you are diagnosed ME/CFS you are entitled to it, I know long covid is different, but I think you can argue along those lines. Hmm okay seems it's not as clear cut for long covid from a brief look. May be worth discussing with a decent GP as if you've been ill for over quite clearly something is going on. We are going to ask GP in two weeks so will update.

 

[Brainaddict]

I know if you are diagnosed ME/CFS you are entitled to it, I know long covid is different, but I think you can argue along those lines. Hmm okay seems it's not as clear cut for long covid from a brief look. May be worth discussing with a decent GP as if you've been ill for over quite clearly something is going on. We are going to ask GP in two weeks so will update.

I think Long Covid still isn't fitted into their way of doing things. A doctor who actually thinks rather than just follows the instructions on their computer screen can definitely put you forward for the flu jab, as they have discretion to prescribe it as they think necessary, but I haven't managed to find one of those in my GP surgery yet. Given the jab costs a tenner I will just pay rather than have another argument about it.

 

[wtfftw]

I know if you are diagnosed ME/CFS you are entitled to it, I know long covid is different, but I think you can argue along those lines. Hmm okay seems it's not as clear cut for long covid from a brief look. May be worth discussing with a decent GP as if you've been ill for over quite clearly something is going on. We are going to ask GP in two weeks so will update.

Yeah. I'd never managed to get a free one for ME until I found a helpful pharmacist.

 

[ska invita]

Really? On what grounds? I tried to get one last year and my doctor told me I wasn't eligible. Was going to pay this year, which wasn't even possible when I tried last year due to shortages.

yeah i keep getting texted and even got a letter - the reason being on the list for breathing difficulties now
ive put it off but will get it soon

 

[Riklet]

I was told I wasn't entitled to a free flujab fairly recently based on my long covid diagnosis. Ive also been diagnosed with CFS as a result of covid though (whatever that means) but I may just have to stump up and pay if I still want it. Speaking to the doctor again next week...

I am back working again, doing 2 days a week working in a kitchen doing assistant/KP stuff. It's ok for now. Not done this kinda job for years but I really needed the money and an immediate start, not faffing around with emails and interviews and bullshit. Quite fun and busy so time goes fast. I have regular breaks and I'm only doing 5 hour shifts cos of my fatigue. Doing the bins is the only heavy thing I struggle with but someone is always helping. Im basically just interacting with the same team and there are open doors and ventilation so it isnt the worst covid-wise. Although im the only one that wears a mask...

My long covid symptoms have definitely continued to get better in the past few months and I am still cycling/walking/driving regularly again. Also done a bit more socialising too! The tinitus, skin issues, fatigue, lower back ache, tired eyes and involuntary jaw movements are all still going on, to various extents. Luckily my mood is much better and I sleep really well at the moment... like 8-10 hours a night. Double camomile tea before bed probably helps (maybe the sertraline too - I am on the ssris still).