I wanted more clues about whether we live in a world where really bad long covid outcomes are vanishingly rare (but concentrated a lot in my Twitter) or in a world where for instance a large fraction of ‘brain fogs’ reported are anything like the horrors sometimes described. I went to Positly, hoping that a randomish sample of people who want my money would answer.

I hope to write something more careful about this survey soon, especially if it is of interest, but figure the basic data is better to share sooner. This summary is not very careful, and may e.g. conflate slightly differently worded questions, or fail to exclude obviously confused answers, or slightly miscount.

This is a survey of ~200 Positly survey takers, all between 20 and 40 years old. Very few of the responses I’ve looked at seem incoherent or botlike, unlike the survey I did around the time of the election.

Results

Have you had covid?

Yes: 57

No: 151

Unsure: 22

Do you seem to have ongoing health problems after recovering from acute covid illness?

Yes: 12 out of 57 = 21%

Are you currently working less as a result of the covid pandemic?

“Yes, because I had covid and it left me with ongoing problems with physical or mental health” - about 6 tick this, though often in conjunction with other yes explanations.

=> 10% rate of people apparently working less at least partly due to Long Covid, among those who’ve had covid

(Also, here is an example of someone responding that they work just as much as before:

‘I am a registered nurse, so I am around a lot of COVID. The lingering symptom that has been the worst is the fatigue. I feel like I am never rested. It actually lead to a car accident because I fell asleep driving after the second round of COVID…’

Finding good questions is tricky - in a bad enough situation everyone might be doing very badly and yet look more productive due to necessity.)

Agreement with a list of checkable statements about their lives

8 people unambiguously checked boxes agreeing with statements that sounded especially brutal to me (they could check as many as they wanted from a longer list including less brutal things):

  • I feel substantially cognitively damaged
  • I am unable to walk up stairs without resting
  • I am less markedly able to think clearly, more than half the hours of the day
  • My life is miserable

(I’m tentatively not including people who seemed to give conflicting answers in different places, though maybe some will make sense on further inspection)

This seems to be 8/57 = 14% rate of brutal covid outcomes, though at least some of these are probably very recent - I haven’t filtered things out by when they got covid, though I did ask them (I’m hoping to go to sleep very soon).

How much do your ongoing health problems from covid reduce your capacity to do things you would have normally done in a day?

Only given to the 12 people who said they had ongoing health problems.

Answers:

Average: 46% reduction

Median: 37% reduction

People citing less than 30% reduction: 1

For people with ongoing health issues, given a choice of A) ‘be rid of ongoing covid related health issues and symptoms forever’ or B) an increase in income this year:

For 10% increase in income:

6 would take health, 3 income, 2 N/A

For 50% increase in income:

3 would still take health, 3 would take income

For 200% increase in income:

1 still prefers health, 2 would take income

##Questions just given to people who didn’t have covid, about people they know:

  • How many people do you know who had covid at least two months ago and survived?
  • How many of them are less than 40 years old?
  • How many of those people (under 40 years old, survived covid at least two months ago) seem to be having longer term health problems as a result, that probably reduce their productivity by more than 20%?

151 respondents estimated between them that they knew 479 people less than 40 years old who survived covid over two months ago (ignoring two people with implausibly high numbers of acquaintances). Of these, they estimated that 75 of these people had developed longer term health problems that reduced their productivity by more than 20%.

75/479 = 16%

=> Among youngish people who respondents knew to have recovered from covid more than two months ago, it seemed to them that about 16% of those people had more than 20% reduction in productivity from ongoing covid health effects

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[-]xepo170

Did you set up the survey in a way that you can treat the people who haven’t had Covid as a control?

If not, I’m afraid this is gonna be pretty inconclusive — my best explanation is that people are blaming ~every health ailment they have on long Covid, even if it’s unrelated.

I think one of Zvi’s recent posts highlighted a study that convinced him that long Covid mostly wasn’t a thing, but I can’t seem to find it now.

UK's ONS has a nice comparison with controls which shows a clear difference, see Fig 1. (Note that this release uses laboratory-confirmed COVID-19 only, unlike some of their other releases.)

I suppose that you mean the paper linked in this post:

Claiming to have Covid-19 was correlated with claiming to have Long Covid.

Actually having Covid-19 was not correlated with anything other than anosmia.

That said, I definitely know people with ongoing health problem after recovering from covid, and I would be really confused if this turned out to be just a belief.

I'm very curious about this as well. I expect MTurk (which Positly is built on) to disproportionately draw from people willing to tolerate a low wage for increased flexibility, who are disproportionately disabled.

Based on a study by the University Mainz (Germany) it seems to me that long Covid is real, but not necessarily if you look at the specific symptoms thought to be associated with long covid.

They compared three groups: 
Group 1 Covid patients ("wissentlich infizierte")
Group 2 persons with Covid antibodies not knowing that they had Covid ("unwissentlich infizierte")
Group 3 persons without Covid antibodies ("ohne Infektion")

a) Looking at a list of possible long Covid symptoms 59.5% of group 1 were asymptomatic, 60.4% of group 2 and 54.3% of group 3. Serious long Covid symptoms 7.3% in group 1, 9.3% in group 2 and 11.3% in group 3. [slides 18 and 21]. Taking this at face value would indicate a small protective effect for getting Covid symptoms against long Covid (not the official conclusions of that study, of course, and mine neither, but it would have been such an amusing headline).

b) Looking at the subjective health state, however, yielded more plausible results:
29.8% of group 1 (knowingly infected) reported worse health compared to before the pandemic, whereas 22.4% of group 2 (unknowingly infected) and 22.0% of group 3 (not infected) [see slide 13]. Maybe the difference between group 1 and groups 2+3 could be seen as a rough estimate for long Covid (my conclusion, not necessarily the study's), that would put the risk for long Covid at about 7.5%. Of course, there are factors that could lead to this estimate being too low (having had Covid reducing the anxiety related health problems compared to the other groups; then the organ based health problems for group 1 could be more frequent than 7.5% to get to the same overall results) or too high (persons who know they had Covid think they should say that their health is worse, e.g. because of the discussion about long Covid.).

This roughly matches the anecdotal evidence from my bubble. Something like 1 in 5 symptomatic cases get lingering symptoms that impair their ability to work and live, some fraction of that are not back to work after many months, and the long-term symptoms are almost an exact match for chronic fatigue/fibromyalgia. My hope is that, given the numbers of long covid, there will be some more research into what causes it, and it might end up benefiting those with CFS, who now mostly suffer and struggle in silence and isolation. 

Have you had covid?

Generally, it makes sense to both ask "do you think you had COVID-19" and "did you have a positive test". I remember that there was some study that claimed that subjective sense might be more predictive for long COVID symptoms than the positive test.

Can your survey give P(long-covid | vaccination status) ?

I did ask about it, data here (note that n is small): https://www.lesswrong.com/posts/iTH6gizyXFxxthkDa/positly-covid-survey-long-covid