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Long Covid

elbows said:
Media coverage of how woeful the care is is pretty woeful itself, but at least the Royal College of Nursing have said stuff which briefly gets the subject back onto the news.

www.theguardian.com

Care for 2m Britons with long Covid ‘woefully inadequate’, say top nurses

Royal College of Nursing highlights lack of specialist NHS clinics and disparities in care around the UK
www.theguardian.com www.theguardian.com
Click to expand...
Yeah, I'm registered with a Long Covid clinic but recently everything they planned to do to assess me further has stuttered to a halt, presumably under the weight of cases. In the meantime the clinic doctor wouldn't even take the 'risk' (i.e. go beyond NICE guidelines) of prescribing me anti-histamines even though I am taking them already.

“Future work should follow patients to examine if sleep, fatigue and mental health symptoms spontaneously remit with time,” said Sara Nowakowski at Baylor College of Medicine in Houston, who led the Texas-based research.
Click to expand...

Stuff like this really winds me up because they're still acting as though post-viral conditions are something new. The research should be well beyond examining such basic stuff by now but the long-running failures of the medical profession in dealing with previous post-viral conditions means a lot of the research is still at this Noddy stage (the answer is: some people's symptoms will remit spontaneously, other people's won't, you fecking eejits).
 
I've not been studing Long Covid research in great detail but the following story about a Canadian study sounds to me like the same sort of factor as a study I think I heard about in the past found:

globalnews.ca

What causes long COVID? Canadian researchers think they’ve found a key clue - National | Globalnews.ca

A new Canadian study has identified a potential key culprit causing so-called long COVID patients to continue experiencing breathing issues months after contracting COVID-19.
globalnews.ca globalnews.ca

A team of researchers based at five centres across Ontario have zeroed in on a microscopic abnormality in the way oxygen moves from the lungs and into the blood vessels of long COVID patients in their trial.
Click to expand...
 
It's interesting work but not sure there's enough evidence to show its the 'cause' of either Long Covid or Long Covid symptoms. It might be one factor in a chain of systemic failures.
 
ska invita said:
i wonder if the current wave of people catching it is creating as many long covid cases as pre-jab covid cases??
Click to expand...
The previous Omicron wae was absolutely massive too. And the one before that wasnt small relative to previous waves, and the levels during the dip between those two waves wasnt small by historical standards. The Delta wave now looks small compared to the Omicron waves, but was actually reasonably large relative to the waves before it, and it dragged on for a very long time.

So on paper, we have over a years worth of really huge number of cases in the vaccinated era.

There have been some studies which looked into Long covid in vaccinated people, but I didnt pay enough attention to them. And the subject is also obscured by a lack of clarity in regards how long long covid is in individuals. I havent got a clear picture in my head as to how many long covid cases drag on for years, as opposed to months. Clearly the authorities are trying to bury their heads in the sand about this stuff, and it will be one of those things where the language of regret ends up getting used much later if very long term data reveals that it caused a huge, enduring problem thats massively impacted on public health in a manner that might even be described as permanent.

ZOE do include a 'number of daily new cases of people expected to suffer long COVID graph in their full report. One where the estimates use the definition of people who fell ill on each day who are predicted to then suffer symptoms lasting more than 12 weeks. Its missing the very first wave due to lack of study/testing/data back then, but it includes the second wave which counts as a pre-vaccine wave and can put the later waves in perspective. Note that even the dip between the current Omicron wave and the previous Omicron wave features levels that are about as high as the very peak levels estimated for the 2nd pandemic wave.

Screenshot 2022-07-16 at 12.40.png
 
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As I said possibly on a different thread Ive fully recovered...has been a great summer for me, very active and loving life

But then with the train strike on Thursday I biked into work and back - over 90 mins each way - and it has broken me - 3 days of perma exhaustion so far! I can tell Im going to come out of it before too long but its a familiar feeling. Goes to show...
Im not down about it, it will be fine I know it, but a reminder nonetheless
 
two sheds said:
Just spoken to a friend who had long covid symptoms for six months: couldn't walk properly,no energy, could hardly get to the bathroom. She said she caught covid again and once she'd recovered from that all her long covid symptoms disappeared and she's feeling fine again :thumbs:
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Yes, there are a few stories of that happening. Some kind of reset of the immune system it seems. Didn't happen with me though, and my impression is it's a lucky few who get saved by a second bout.
 
Brainaddict said:
Yes, there are a few stories of that happening. Some kind of reset of the immune system it seems. Didn't happen with me though, and my impression is it's a lucky few who get saved by a second bout.
Click to expand...
perhaps similiar to vaccine "reset" some people experience (i think it massively helped me)
are you elegible/going to get a jab this autumn?
 
Not exactly Long Covid, but a thing in the FT today "The growing evidence that Covid-19 is leaving people sicker"
"The potential impact on heart and brain disease poses challenges to healthcare systems globally"
archive.ph

The growing evidence that Covid-19 is leaving people sicker | Financi…

archived 31 Aug 2022 04:39:09 UTC
archive.ph archive.ph

Perhaps that shouldn't be surprising.

May not be related but I'm currently in bed with a chest infection - for the second time this summer. I do wonder if its somehow related to having had a very respiratoy long covid. No way of knowing i guess.
 
We investigated Long Covid incidence by vaccination status in a random sample of UK adults from April 2020 to November 2021. Persistent symptoms were reported by 9.5% of 3,090 breakthrough SARS-CoV-2 infections and 14.6% of unvaccinated controls (adjusted odds ratio 0.59, 95% CI: 0.50-0.69), emphasising the need for public health initiatives to increase population-level vaccine uptake.
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academic.oup.com

Risk of Long Covid in people infected with SARS-CoV-2 after two doses of a COVID-19 vaccine: community-based, matched cohort study

Abstract. We investigated Long Covid incidence by vaccination status in a random sample of UK adults from April 2020 to November 2021. Persistent symptoms were
academic.oup.com academic.oup.com
 
I am a lot better and job hunting again. working part time. and looking at going back to my masters.

but I def still have long covid. it is just the way it is. things are up and down and as someone wiser than me once said.. recovery is not a linear path. this is so true. I feel ive made slow but steady progress this year and im now super active again compared to before. able to cycle and swim and drive for an hour or so and watch videos or TV without pausing and having a break.

I'm not overly optimistic about any conventional medical treatments but it's nice to have that in mind as a future thing.
 
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Riklet said:
I am a lot better and job hunting again. working part time. and looking at going back to my masters.

but I def still have long covid. it is just the way it is. things are up and down and as someone wiser than me once said.. recovery is not a linear path. this is so true. I feel ive made slow but steady progress this year and im now super active again compared to before. able to cycle and swim and drive for an hour or so and watch videos or TV without pausing and having a break.

I'm not overtly optimistic about any conventional medical treatments but it's nice to have that in mind as a future thing.
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happy to hear those positives for you...fingers crossed that it continues, im sure it will slowly but surely
i still get bouts of what is most comparable to asthma now, especially after getting exhausted, riding the be active but dont get exhausted line is still a thing
booked a covid jab yesterday, im under 50 but eligible now it seems, hoping it does something like it did last time
 
How are my fellow long haulers doing? I luckily managed to bring recovery along by walking around really slowly for about a month as I had been reading a lot about exercise with ME and stuff and realised that the pace I moved at was more of a problem than distance covered. This hilariously irritated my son no end, who drew the line at me slowly floating across a road as a car waited, but fucks I did not give and my efforts paid off big time. So anyway between only working part time and doing that I got rid of the worst symptoms, and they only re-emerge if I really speed up a lot but one that's really bugging me is feeling cold when I shouldn't be cold. It feels like my blood is running cold almost, and gets worse with activity of which there is a lot of in my Job. Does anyone else experience this? I mentioned it to my GP but I basically jumbled all my symptoms into one sentence as I was having a mental health review as well and she never mentioned the feeling cold part. I think she's been quite stressed recently and kept apologising to me for talking too much, probably my shite comms made her nervous. I wonder if I should make another appt, as it feels like there's something seriously wrong but I may be panicking. I mean the obvious answer here is "yes, make another appt" but would be interested to know if this is a common symptom?
 
HoratioCuthbert said:
How are my fellow long haulers doing? I luckily managed to bring recovery along by walking around really slowly for about a month as I had been reading a lot about exercise with ME and stuff and realised that the pace I moved at was more of a problem than distance covered. This hilariously irritated my son no end, who drew the line at me slowly floating across a road as a car waited, but fucks I did not give and my efforts paid off big time. So anyway between only working part time and doing that I got rid of the worst symptoms, and they only re-emerge if I really speed up a lot but one that's really bugging me is feeling cold when I shouldn't be cold. It feels like my blood is running cold almost, and gets worse with activity of which there is a lot of in my Job. Does anyone else experience this? I mentioned it to my GP but I basically jumbled all my symptoms into one sentence as I was having a mental health review as well and she never mentioned the feeling cold part. I think she's been quite stressed recently and kept apologising to me for talking too much, probably my shite comms made her nervous. I wonder if I should make another appt, as it feels like there's something seriously wrong but I may be panicking. I mean the obvious answer here is "yes, make another appt" but would be interested to know if this is a common symptom?
Click to expand...
I feel the cold more than I used to and have to wrap up much more in winter. I've heard other people with long covid say the same. I assume it affects the circulation somehow - would fit with the blood/cardio issues model of what it is. I also get pins and needles from time to time - some people have that a lot. I've not had the cold getting worse with exercise though, that sounds a bit odd, though nothing surprises me with long covid.
 
I always feel this sort of thing ought to be bigger news, but we seem to suffer from the frog boiling in a bucket syndrome: More than 1m people report long Covid in UK a year after infection

If 342,000 people from one day to the next acquired a chronic, disabling illness it would be seen as a catastrophe of a sort that would change a nation's history. Yet that's how many people's lives have been seriously diminished by this thing and no alarm bells go off.
 
Brainaddict said:
I feel the cold more than I used to and have to wrap up much more in winter. I've heard other people with long covid say the same. I assume it affects the circulation somehow - would fit with the blood/cardio issues model of what it is. I also get pins and needles from time to time - some people have that a lot. I've not had the cold getting worse with exercise though, that sounds a bit odd, though nothing surprises me with long covid.
Click to expand...
Yeah I'm assuming I've got those micro clots. The worst thing about this is they can't tell us how worried we should be. I've seen it suggested that micro clots probably increase risk of strokes and heart attacks. To what degree... it's a guessing game :(
 
I had been getting classic panic attacks- palpitations the lot. Had three of those, thinking "my respitory rate is up, my pulse is through the roof, do I need an ambulance" before I looked up the symptoms of a panic attack and it all fitted. Had another 4 nearly starting but I headed them off at the pass with breathing exercises. Fuck it's like trying to man 6 different goal posts.
 
I had several panic attacks back near the beginning of long covid, having never had them before in my life. Thankfully they abated after a few months. But so weird that it wasn't actually due to any change in my mental state, I think the physical problems brought them on. I mean there were mental triggers to the attacks, but both before and since those same mental triggers have had nothing like the same effect.
 
Interesting. I feel the cold a lot more now but I assumed that was due to having lost lots of weight from another illness since having covid. I've also recently been having palpations and had to have an ambulatory Ecg the other week to check them out. Haven't had the results yet
 
Oula said:
Interesting. I feel the cold a lot more now but I assumed that was due to having lost lots of weight from another illness since having covid. I've also recently been having palpations and had to have an ambulatory Ecg the other week to check them out. Haven't had the results yet
Click to expand...
I noticed it as a really instant problem as I work in a carehome where the heating is turned up to 11. It's weird!
 
The Guardian has launched a Living with long Covid section and starts with words from the WHO boss:

Living with long Covid | The Guardian

<p>Millions of lives are impacted by long Covid. The Guardian takes a closer look at the illness, and those who live with it. See all <a href="https://www.theguardian.com/society/long-covid">our long Covid coverage</a>.<br></p>
www.theguardian.com www.theguardian.com

www.theguardian.com

The data is clear: long Covid is devastating people’s lives and livelihoods | Dr Tedros Adhanom Ghebreyesus

The impact of long Covid needs urgent action – and there are five key elements to drive the effort forward, writes the WHO director general
www.theguardian.com www.theguardian.com

www.theguardian.com

WHO chief urges immediate action to tackle ‘devastating’ long Covid

Exclusive: Dr Tedros Adhanom Ghebreyesus calls for ‘sustained’ efforts to help people still experiencing ‘prolonged suffering’
www.theguardian.com www.theguardian.com

Mostly data is only available from high-income countries, which means that we don’t currently have a clear picture on how many people are actually suffering. Current estimates suggest that tens of millions, and perhaps more, have contracted long Covid, and about 15% of those diagnosed with the condition have experienced symptoms for at least 12 months.
Click to expand...

It can affect anyone, but according to the latest data from WHO and the Institute for Health Metrics and Evaluation (IHME) women are twice as likely as men to have contracted the condition and those hospitalised with severe Covid are more likely to develop the condition. From all the interactions WHO has had with those living with the condition, carers, civil society groups and experts, it’s very clear that the condition is devastating people’s lives and livelihoods.

It’s added a significant burden to health workers and the health system overall, which is still dealing with additional waves of infection and the knock-on backlog of essential medical services that have been severely disrupted.

The world has already lost a significant number of the workforce to illness, death, fatigue, unplanned retirement due to an increase in long-term disability, which not only impacts the health system, but is a hit to the overarching economy. While the pandemic has changed dramatically due to the introduction of many lifesaving tools, and there is light at the end of the tunnel, the impact of long Covid for all countries is very serious and needs immediate and sustained action equivalent to its scale. There are five key elements to drive the effort forward.
Click to expand...

Tedros then lists the 5 key elements, but I better not quote the whole thing.
 
A Guardian live updates page entry

Long covid could be contributing to labour shortages in the UK, the governor of the Bank of England has said.

Andrew Bailey told a G30 seminar that labour shortages are largely being driven by an increase in older people choosing not to work, with possible reasons including long covid, people with long-term health conditions reluctant to work during pandemic and public health systems not treating people as promptly in a covid world.
Click to expand...
 
ska invita said:
happy to hear those positives for you...fingers crossed that it continues, im sure it will slowly but surely
i still get bouts of what is most comparable to asthma now, especially after getting exhausted, riding the be active but dont get exhausted line is still a thing
booked a covid jab yesterday, im under 50 but eligible now it seems, hoping it does something like it did last time
Click to expand...
Have you had any investigation eg long covid clinic? Lung function test?
 
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