I wrote this in August 2020 in @TheLancet:

“So far in the COVID-19 pandemic, surveillance systems are not monitoring ill health and long-term implications of COVID-19, only deaths are reported.”
“A universal surveillance case definition of recovery from COVID-19 is still absent. Many people have prolonged symptoms, ill health, and reduced functionality for months, even if they were not hospitalised for SARS-CoV-2 infection.”
“We must move long-haul COVID from anecdote to something that is routinely quantified and monitored, as is currently being done with deaths and positive tests.”
“We must measure the proportion of cases with prolonged ill health, not only to provide support and care but also to redefine the true effect of the pandemic and inform the appropriate response to it.”
“Public health bodies must also universally agree definitions of what constitutes recovery, to estimate the true burden of ill health associated with SARS-CoV-2 infection.”
What I called for 18 months has not happened. We know much more about #LongCovid now but sadly many loud voices are still debating whether it’s important enough. They’re still still able to do that because of the absence of measurement and surveillance.
#CountLongCovid
It’s extremely sad that it not properly measured in children which allowed the dominant narrative of mass infection of children is ‘harmless’ or may even be helpful in speeding up ‘herd immunity’. A risky narrative based on the absence of proper surveillance and measurement.

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More from @Dr2NisreenAlwan

Jan 14
Don’t dismiss #LongCovid❗️
If your friend, relative, colleague, patient or child say they’re not recovered after covid believe them & help them navigate their problems. Hope doesn’t only come from medical treatments. It comes from the love, support & understanding those around u.
Whatever you do, don’t trivialise their ordeal. Saying things like ‘be positive’ or ‘just get a bit of sunshine’ or ‘others have it so much worse’ etc can cause more isolation, stigmatisation & feeling of guilt. If they say it’s hard, IT IS hard and they’re trusting u with it.
Don’t start analysing if their fatigue or another symptom is ‘normal’ or not. As a general rule, people do know what’s normal for them. They know their body before and after covid. It’s harder for young children and that’s tough, but also believe parents who know their kids well.
Read 5 tweets
Jan 13
Oh my God, this is devastating. I personally knew Fiona. I met her when we presented at the same ⁦@acmedsci⁩ event in January 2020. She was such a nice, warm, funny and friendly person, full of life. I just can’t believe it. Covid is so evil. RIP. edinburghlive.co.uk/news/edinburgh…
Her talk from that event:

Fiona made the world a better place through her work. I’m crying. Still can’t believe it. Some people feel so alive you just can’t believe them passing away. My heartfelt condolences to her family and friends. If I’m affected that much can’t even begin to imagine their suffering.
Read 4 tweets
Jan 13
Questions about the new guidance on self isolation after covid:
1/
"People self-isolating with COVID-19 will have the option to reduce their isolation period after five full days if they test negative on both day 5 and day 6 and do not have a temperature, from Monday 17 January"
2/
Does "have the option" mean that if people want to be on the safe side and isolate longer they can (and be excused by their employers) even if negative LFTs on days 5 and 6? In other words, are they *obliged* to end self-isolation on day 6 if they test negative on days 5 & 6?
3/
"and do not have a temperature"

Does this mean they can end isolation after five days if they're still symptomatic e.g. coughing and sneezing on day 6?
Read 4 tweets
Jan 11
“endemic”
“only those with underlying conditions”
Read 11 tweets
Jan 11
Key @ONS UK #LongCovid stats:

1.3 million people (at least 4 wks).

That’s 1 in every 50 people in the UK.

About half a million for at least a year.

In about 2/3 of the 1.3m, day-to-day activities are affected.

In about a quarter of a million, activities “limited a lot”.
LC more common in those:
▪️aged 35-69
▪️women
▪️those living in poorer areas
▪️those working in healthcare, social care & teaching
▪️those with another activity-limiting health condition
Children (2-16 years):
117,000 affected ( at least 4 wks)
49,000 (at least 12 wks)
20,000 (at least 1 year)
Read 7 tweets
Jan 9
I missed this study from few months ago. Interestingly though sample relatively small and only basic analysis, the preliminary finding of lower antibody levels in those with more severe fatigue gives support to the link between immune response & #LongCovid
mdpi.com/2077-0383/10/1…
Remember this study I tweeted about months ago?
Also points to a link between Long Covid and weak antibody response to covid:
link.springer.com/article/10.100…
Two main implications for this:

1. It is useless to use antibody levels to assign cases and controls when studying prevalence of Long Covid. More here:
nisreenalwan.wordpress.com/2021/10/16/lon…
Read 4 tweets

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