Prevalence of long Covid

[TunMahla]

Is anyone on top of the literature regarding the prevalence of long Covid? I have only seen the value from the Zoe app with a whooping 10% of all symptomatic infections reporting long term symptoms. I can imagine that number is significantly upwardly biased by the fact that it is the most sick and concerned about their health who may be logging their daily symptoms... so do we have any other estimates of the frequency of long Covid? I am asking this as I have kids under 2 and I worry about caring for them should I get long term debilitating symptoms from the disease. It is reassuring that the risk of Covid death (in case of infection) is an additional year's worth of risk of death from all other causes (e.g. see recent article in BMJ from David Spiegelhalter) and I think most people can deal with that risk so I think the key impact of Covid could potentially be from long term damage.
TLDR: is there any good evidence regarding the prevalence of long Covid?

I can't answer the actual question,

I would suggest that you stop worrying about how you'll cope too much though. Life throws all sorts of curve balls at us, Covid or not, but whatever happens, you will adapt & cope, it's what us humans do. I did when I took I'll & was diagnosed with debilitating conditions after DDs birth & I know many others who did too.

Of course take Covid seriously, but take it a day at a time & don't drive yourself crazy with worry

I see your point, however I am the sort of person who likes to have a number for everything to better ease my worry. Especially because from where things are going, contracting Covid may well be an almost certainty this winter. That is not the case with other debilitating illnesses.

I am with you on worrying about Long Covid. I know several people who have been significantly debilitated for several months, unable to walk more than 100 yards from their home, brain fogged etc etc. I think it is under discussed.

I agree that it's important to have proper information on the prevalence of long covid

Article in the Guardian this very morning. Got some stats in it but I haven't read it yet, might go some way to answering your questions.
www.theguardian.com/world/2020/sep/13/i-was-infected-with-coronavirus-in-march-six-months-on-im-still-unwell

Ok read it - useful article - quotes 600,000 (that'll be world-wide, although it doesn't make that clear) with long Covid to date, speaks about research, parrallels to ME, support groups, has some links.

Thanks for the Guardian link. The data quoted in the article comes from the Zoe (Covid Tracker from KCL) app I mentioned but provides more detailed breakdown:
Quote:
"About 600,000 people have some sort of post-Covid illness, according to Tim Spector, professor of genetic epidemiology at King’s College London, who says that around 12% of sufferers report symptoms to the Covid Tracker app for longer than 30 days. One in 200 says the effects last for more than 90 days."
This suggests that 0.5% of Coronavirus sufferers have symptoms 3 months post infection and the vast majority of people with long Covid recover in 1-3 months?

I'm not good at interpreting data, not my strong point at all. And isn't it early days to say the vast majority of people with long Covid recover in 1-3 months? It may look like that now, but surely it's too early to call that a conclusion?
Anyways it's definitely a thing and 600,000 people so far (less than a year) is a lot of people, globally, to have this. Disturbing. And you've got to feel very sorry for the young chap, watching his friends being blase while he's still suffering.

I know a scarily large number of people with complications, out of the smallish group of friends/acquaintances who have been infected so far.
It is very worrying, especially as the focus still seems to be on deaths vs fine. I am increased risk, but my statistical risk of death is still low. Nobody knows their risk of complications though, and I know of people left with cardiac conditions and brain damage.

Well, I just restated what the Tim Spector group from KCL described in the Guardian piece. Of course we need more studies to investigate the prevalence of long term Covid, hence my original question...

I am also pretty sure that the 600,000 number refers to the UK alone, as Covid Tracker gathers only British data. 12% of all sufferers equating to 600,000 makes the total number of cases 5 milion which is sensible if we assume 1 in 15 British Coronavirus cases were tested.

It needs to be more publicised. People also quote the likelyhood of death but long Covid needs to be taken seriously. I am six months post Covid. I am nearly better now but still along way off any kind of exercise which is my main hobby. I had Covid mildly but have continued to have chest pain and shortness of breath. I am not on the Zoe app.

I don’t know if we can say yet as a six month tail is not considered particularly long for many virus.

It’s common with respiratory illness. I’ve had flu. Bad flu. I was really poorly. It took 3-4 months to feel ‘well’ & 6-8 months for my chest to not hurt everytime I walked. But I am now totally fine. It took over the best part of a year, wasn’t great. But I don’t worry about catching flu again. I mean, I’d rather not. But if I do, well, so be it.

Unfortunately, some people do get ill from minor illness. A young lad in my village lost both legs from sepsis stemming from an early infection. Awful. I fear sepsis SO much more than Covid. And there’s no keeping safe from Sepsis. It comes from minor infection that every child is likely to get in the winter. It really freaks me out. But again, I can’t let my fear ruin my children’s childhoods. I just have to be vigilant & hope for the best.

Life isn’t without risk. Unfortunately there are many awful illnesses far worse than COVID with much further reaching consequences. I think I’d lose my mind if I considered them all. So I don’t. I risk assess v my children’s happiness & wellbeing. And I live. As should you.

Long covid scares me, I had glandular fever as a teen, 8 weeks off school and I couldn’t do a full week at school for months afterwards. I was young and fit then, I’m a lot older and not so fit now. It’s worrying.

I think it is a very valid concern OP and one which is not discussed enough. I am looking into getting critical illness insurance to cover this risk although am not yet sure whether it is now a policy exclusion due to its prevelance.

I have long covid but in a fairly mild fashion. I get intermittent fatigue episodes with brain fog and confusion which occur anything between weekly to up to three weeks clear.

I'm trying to manage it on the new advice of avoiding boom and bust activity. Daily light exercise and avoiding too much overstimulation, mental or physical.

I know someone with severe long covid. Pre covid they were incredibly fit, probably one of the fittest people I know and they are young as well (33). It’s been 5 months now, I just can’t imagine it.

Article about long term complications from Covid in Bergamo Italy:
www.businessinsider.nl/about-half-of-the-covid-19-survivors-from-bergamo-one-of-italys-coronavirus-epicenters-havent-recovered-six-months-on-providing-a-stark-warning-of-the-pandemics-lingering-aftermath/

The original (much better) article is in the Washington Post, but is paywalled. However, the article in the link above provides the main points.

I’m worried about Long Covid much more than death. Chances are higher you’ll get LC.

There are long running threads on Mumsnet - called Lungs threads and the latest one is Covid Lungs 18 weeks plus. Lots of younger, healthy people reporting problems as well as us older folk.

Thanks for the Business Insider link. So the study in a Bergamo hospital reports 50% patients with long Covid six months past infection. This sample is clearly extremely biased as includes people sick enough for hospitalisation during the time when hospitals were overwhelmed in North Italy. In fact, previous research from Bergamo showed 50% of ALL infections were asymptomatic and obviously such people cannot have long Covid.

So we have two extreme data points: between 0.5% (Zoe) and 50% (Bergamo) of cases with long Covid. My hunch is that the real number of long Covid for all infections is much closer to the 0.5%, albeit quite a bit higher (1-5%?) as I imagine people with long Covid (1 months plus) who are not improving may tire of updating the app with their daily symptoms, hence the drop off in long Covid reported between 1 month and 3 months post infection .

Well, I don't update the app any more as I need to monitor and share my symptoms with health professionals etc - and the app does not let you see your own recordings over time. I use my period tracker instead.

I wonder with those stats from Bergamo if they're talking about the same thing - because I read that there's actually a distinction between long covid of very mild original infections versus people who had it seriously in the first place.

I definitely had the original infection very lightly. The recurring symptoms are the more difficult thing.

I have long covid. I'm not counted in any official figures as I wasn't tested in March, as they weren't testing. Diagnosed as Covid by 5 different doctors. Previously healthy, no issues, not overweight, under 40. 5 months in and still not better. These have been my symptoms:

Initial sore throat and cough then;

Breathing problems (A&E 5 times for oxygen, there were no beds available to admit me and my lips and turn blue so I was sent home.)
Heart problems (now have a heart condition called tachycardia. I have had one suspected heart attack.)
Eye floaters and blurred vision.
Feelings of doom (like sepsis)
Brain fog and fatigue.
Veins bulging and fizzing, new bulging varicose veins all over my legs.
Unable to walk far or for long without collapsing.
Tinnitus
Tremors and shakes.
And many more.

I have young children, a husband, a career.... I'm trying to look on the bright side but right now I feel like my life is over. I've had flu and this is certainly nothing like it.

Yes, obviously the Bergamo figures are from people who had the most severe disease, so need to be viewed in that context (you would expect people who had been very ill to take a long time to recover).

Anecdotally quite a few people with long covid (3 months or more) had a mild version of the disease, but it's also possible that the Zoe app is either over estimating or under estimating prevalence due to the self-reporting nature of the app. Hopefully the 2 large scale studies taking place will provide some answers...