Office of National Statistics: Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: Updates

Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 1 September 2022

1.Main points
An estimated 2.0 million people living in private households in the UK (3.1% of the population) were experiencing self-reported long COVID (symptoms continuing for more than four weeks after the first suspected coronavirus (COVID-19) infection that were not explained by something else) as of 31 July 2022; from this bulletin onwards, the published estimates are not fully comparable with those in previous bulletins.

Of people with self-reported long COVID,
253,000 (13%) reported they first had (or suspected they had) COVID-19 less than 12 weeks previously,
1.7 million people (83%) at least 12 weeks previously,
892,000 (45%) at least one year previously, and
429,000 (22%) at least two years previously.

Of people with self-reported long COVID, 582,000 (29%) reported they first had (or suspected they had) COVID-19 before Alpha became the main variant; this figure was 256,000 (13%) during the Alpha period, 386,000 (19%) during the Delta period, and 681,000 (34%) during the Omicron period.

Long COVID symptoms adversely affected the day-to-day activities of 1.5 million people (73% of those with self-reported long COVID), with 384,000 (19%) reporting that their ability to undertake their day-to-day activities had been "limited a lot".

Fatigue continued to be the most common symptom reported by individuals experiencing long COVID (62% of those with self-reported long COVID), followed by shortness of breath (37%), difficulty concentrating (33%), and muscle ache (31%).

As a proportion of the UK population, the prevalence of self-reported long COVID was greatest in people aged 35 to 69 years, females, people living in more deprived areas, those working in social care, those aged 16 years or over who were not working and not looking for work, and those with another activity-limiting health condition or disability.

The estimates presented in this analysis relate to self-reported long COVID, as experienced by study participants who responded to a representative survey, rather than clinically diagnosed ongoing symptomatic COVID-19 or post-COVID-19 syndrome in the full population.

Warning: We have now moved to a more flexible, remote data collection method. Participants can complete the survey online or by telephone. Swab and blood sample kits are sent through the post and returned by post (or by courier for some participants). The results in this bulletin are based on both study worker and remote data collection. Therefore, from this bulletin onwards, the published estimates are not fully comparable with those in previous bulletins.

https://www.ons.gov.uk/peoplepopula...infectionintheuk/1september2022#related-links

 

ONS says that they collected about 40% of the responses to this latest survey online (and a few by phone) and people were 30% more likely to report Long Covid online or by phone compared to in a in person interview, which is what they used before. So basically the increase in LC between the previous report and this one is because of that higher likelihood to report LC online.

I wonder why there is such a difference. ONS says:

"For example, participants might have more time to read the survey questions and consider their response and all the response options when responding remotely. Participants might also be less likely to describe themselves as having long COVID in face-to-face interviews because of perceived stigma associated with the condition."

Could that many people really be not willing to admit they have Long Covid in person?

 

My friend is a union rep and a long hauler, thankfully still able to work (Dr Patersons early protocol based around Niacin really helped them). They have been doing a lot of capability hearings around reduced function of lots of staff, clearly they have Long Covid in my friends opinion, the mix of symptoms and the timing is all around Covid yet not one of them will say the words "Long Covid". The one they know of who did say the words was fired last year so its really meant no one will admit it, but a lot of staff are clearly struggling with brain fog, headaches and a variety of physical symptoms but the business isn't wanting to provide any accommodations.

The stigma against ME/CFS has definitely carried over to Long Covid, you see it in social media when healthy people and doctors talk about the conditions, neither group believes they are anything but lazy people wanting hand outs or in need of psychosomatic diagnosis (although oddly it never comes with any "treatment"). So its very believable based on all I have seen. If you want to see doctors generating stigma when they think they aren't being viewed go search for Long Covid in the /r/medicine subreddit as well as the post last week about increases in MCAS and EDS. Illfluencers is what they put it down to, not Long Covid, to them Long Covid is just malingering and a fake illness just like ME/CFS and Fibromylgia. There is definitely a lot of prejudice out there, if you just go off commenters on medicine or juniordoctorsUK its 95% of doctors with these prejudiced views.

 

It will be interesting to see how it changes, now that everyone's doing self-testing and answering the survey question online or by phone. I've been part of the study since it first started, and I did my first self-test today.

One of the issues with the face-to-face visits was that they rattled through a lot of questions very quickly. Even though I'm pretty familiar with them after all this time, I've occasionally had to ask the person to repeat one or two because I lost track halfway through. They're phrased in a style which is fine for a written survey, but some of it isn't easy to read aloud fluently, especially the sentences with several sub-clauses. Add to that the fact that the contractor will be asking the same questions over and over again, day after day, and the resulting slightly bored monotone makes it even harder to follow. If you've ever renewed your insurance by phone and had to listen to them reading out the legal disclaimers at the end, you'll be familiar with the delivery style.

I'm not suggesting there's a large margin of error, just that what they're saying about people making more considered responses online does make sense. Also, long Covid is often an invisible disability, and people relatively new to having one of these will probably have been on the receiving end of numerous But You Don't Look Ill comments. If they were answering the door looking completely normal, some of them might have been concerned about getting yet another disbelieving look.

 

Does anyone have an explanation for this? An optimistic viewpoint might have been that the pandemic and subsequent waves of post-viral chronic illness and disability might highlight the issue for medical students and new doctors and become part of their education. It's so obvious that people are getting sick and disabled from covid and other viruses. Is it too late for any optimism? What is stopping the education and changes from happening? What are the factors? Seems a huge target for potential advocacy as it's an opportunity for change.

 

Well, I suppose if I look on the most optimistic side of it...

Reddit isn't real life, so there's a limit to what we can read into the conversations—people show off and say macho stuff online in a way that they probably wouldn't in a clinic. And even if junior doctors do let some of those attitudes spill over into their practice, some (perhaps many?) will mature, unlearn some of their youthful arrogance, and become better doctors for it.

I think their training model might force young doctors into putting up a bit of a tough front anyway. They have to learn to work in a system that elevates some senior consultants to status levels that can be an obstacle to both patient safety and junior doctors' development; face stiff competition with their peers; and endure incredibly arduous working conditions. Behind that front, many of them are probably anxious, exhausted, constantly questioning what they're doing, and sometimes frankly terrified.

When it comes to post-viral and other challenging chronic illnesses, patients might be able to avoid some of the more scathing responses by thinking about how they present information they've picked up online. For instance, asking a GP, "Do you think some of my symptoms could be caused by mast-cell activation syndrome?" won't always get a sympathetic response (no-one yet seems to have shown that it exists as a clinical entity), but at least it's got a better chance than stating "I think I've got mast cell activation syndrome because I have all the symptoms".

Of course, GPs could also do much better at remembering that most newly-ill patients need time to learn how to assess the reliability of online information, and to realise that qualified doctors are just as prone to hyping unproven treatments as any commercial snake-oil salesman—if not more so.

Edit: Added "salesman" to last sentence.

 

Just to be clear the /r/medicine sub has flared users, many of the commenters were consultants and other substantial individuals which have been checked credential wise via the moderation team to have the role they say they have. They are not just random people playing as doctors nor junior doctors who wouldn't know any better, they are genuinely the people in charge of real substantial numbers of patients and departments all over the world.

There is no way you can present your condition to one of these doctors that will not result in a psychosomatic diagnosis. We aren't the problem here.

 

No, we aren't. But one of the things I was saying, in my usual wordy style, is that the internet is part of the problem.

It encourages people into echo chambers, where unhelpful and at time offensive attitudes are normalised, validated, and ingrained deeper. There were fewer opportunities to do this when professionals only had select members' clubs in which to be obnoxious, and there were more constraints on language, attitudes, and behaviour.

It provides accurate information, deliberate misinformation, and everything in between, and everyone has to learn to read between the lines. This is much harder for patients than doctors.

It encourages people in patient groups to offer opinions even though they may have little knowledge, and enables frequent contributors to gain a status that might lead "newbies" to assume they're better informed or qualified than they really are. This can mean people are given false hope, or encouraged to lobby their doctors for tests or treatments that aren't necessarily appropriate or useful.

Anyway, I'm mithering on again—my point is that the internet's had a major effect on health information, and disrupted some patient-doctor relationships. I'd agree that doctors, as the ones with the power, should be doing most of the work of learning to live with it, but patients can contribute by learning to spot unproven theories and understanding that some online groups are manipulative. If people turn up in clinics having apparently been influenced by unreliable social media content, certain types of doctors will only be encouraged to gripe about it and reinforce each other's disrespectful attitudes and stereotyping.

I know this doesn't address at all the question of straightforward disbelief about conditions like ME, where it's the doctors who've been influenced by unreliable content. I know it's unfair to put the responsibility for not upsetting the apple cart onto patients. But we are where we are, and the doctors do hold the power, so it's in our own interests to avoid fuelling whatever fires we can.

 

Prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK: 6 October 2022

1.Main points

• An estimated 2.3 million people living in private households in the UK (3.5% of the population) were experiencing self-reported long COVID (symptoms continuing for more than four weeks after the first confirmed or suspected coronavirus (COVID-19) infection that were not explained by something else) as of 3 September 2022; these estimates are not fully comparable with those in previous bulletins due to changes in data collection methods.
  
  
• Of people with self-reported long COVID, 363,000 (16%) first had (or suspected they had) COVID-19 less than 12 weeks previously, 1.8 million people (80%) at least 12 weeks previously, 1.1 million (46%) at least one year previously, and 514,000 (22%) at least two years previously.
  
  
• Of people with self-reported long COVID, 672,000 (29%) first had (or suspected they had) COVID-19 before Alpha became the main variant; this figure was 259,000 (11%) in the Alpha period, 425,000 (19%) in the Delta period, and 832,000 (36%) in the Omicron period.
  
  
• Long COVID symptoms adversely affected the day-to-day activities of 1.6 million people (72% of those with self-reported long COVID), with 342,000 (15%) reporting that their ability to undertake their day-to-day activities had been “limited a lot”.
  
  
• Fatigue continued to be the most common symptom reported as part of individuals’ experience of long COVID (69% of those with self-reported long COVID), followed by difficulty concentrating (45%), shortness of breath (42%), and muscle ache (40%).
  
  
• As a proportion of the UK population, the prevalence of self-reported long COVID was greatest in people aged 35 to 69 years, females, people living in more deprived areas, those working in social care, those aged 16 years or over who were not working and not looking for work, and those with another activity-limiting health condition or disability.
  
  
• The estimates presented in this analysis relate to self-reported long COVID, as experienced by study participants who responded to a representative survey, rather than clinically diagnosed ongoing symptomatic COVID-19 or post-COVID-19 syndrome in the full population.
  

https://www.ons.gov.uk/peoplepopula...ronaviruscovid19infectionintheuk/6october2022

 

It looks like maybe 80% of Long haulers are reporting they "recovered" (might not mean they actually rid themselves of all symptoms) and yet this number just keeps going up. This is just scary amounts of disability and increases in disability, 300k extra in a month or so is insane.

 

New figures being reported in the news

https://www.independent.co.uk/news/uk/office-for-national-statistics-people-b2196834.html

https://www.theguardian.com/society...eport-long-covid-in-uk-a-year-after-infection

https://www.walesonline.co.uk/news/health/more-million-people-uk-long-25193283

https://uk.sports.yahoo.com/news/over-2-3-million-people-085044956.html

https://www.telegraph.co.uk/news/2022/10/06/record-one-28-people-now-believe-have-long-covid/

 

Comparison of these latest figures with the previous figures.

 

The September one was also with the adjusted method as well, it was actually a surprise that didn't increase because they said the face to face meetings were causing some people to hide their condition due to abusive comments by the survey takers! So I think September and October are likely comparable and this is more a warning for comparison to the earlier ones that used the survey method rather than online with online expected to get better less molested data.

 

Haven't looked closely at these reports in a long time. The most worrying figures are that 1.1 million people have suffered from long Covid for at least a year, and that 1.6 million have some disability, and 342,000 whose activities are "limited a lot." There's a lot of people who are disabled and not getting better.

The US population is almost exactly 5x as big, so back-of-the-envelope estimates (neglecting differences in infection rates) would look like this. 11.5M people with LC, 5.5 million sick for over a year, 8 million disabled to some degree, 1.7 million suffering substantial disability. 1.7 million is roughly the population of West Virginia, or Hawaii. 8 million is comparable to Virginia or Washington state. Yikes. (As a side note, the minimum number of pME in America--836,000--is on par with the population of South Dakota. The maximum estimate, 2.5 million, is bigger than the population of Nebraska.)

 

https://twitter.com/user/status/1577677830439292928

https://twitter.com/user/status/1577819038708772864