New data from the Office of National Statistics in the UK, which has been doing some of the best #LongCOVID prevalence work.

The previous estimate of 10% still sick at 12 weeks is updated to 13.7%. Instead of 1 in 10, now 1 in 7.

This includes kids, so is higher in adults. 1/
For the first time, they've released age-based prevalence numbers for the % of people still sick at 12 weeks. People (with PCR+ tests) still sick with #LongCOVID at 12 weeks, by age:

2-11: 7.4%
12-16: 8.2%
17-24: 11.5%
25-34: 18.2%
35-49: 16.1%
50-69: 16.4%
70+: 11.2%

Notably, like other longitudinal studies, there's only a small percentage point difference between men & women: of those who test positive, 12.7% of males, 14.7% of females will be sick with #LongCOVID at 12 weeks.

Of all the age groups, age 25-34 is most affected at 18.2%.

Full link is here:…

Thanks to @Acertaintom for always reminding me of these when they come out :)


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More from @ahandvanish

6 Apr
Considering #LongCOVID (and ME) to be an immune-modulated traumatic brain injury akin to a concussion: a thread of papers. 1/
"Bridge between neuroimmunity and traumatic brain injury":
"Emerging Roles for the Immune System in Traumatic Brain Injury" 3/

Read 9 tweets
30 Mar
This new paper on 323 PCR positive #longhaulers containing a really crucial finding:

Low IgG levels in the acute phase were associated with persistent symptoms 7 months later! #LongCOVID 1/…
I do think there is mounting evidence that people with #LongCOVID have disproportionately low antibody levels, and that might be key to understanding the illness. It's also a crucial reason why people without antibodies need to be included in #LongCOVID research. 2/
The big downside of this paper is they only asked about 9 symptoms, none of which were neurological (like sensorimotor issues, "brain fog") except headache. Of those 9, they found that diarrhea or loss of smell in the acute phase were predictive of #LongCOVID at 7 months. 3/
Read 4 tweets
28 Mar
Because @itsbodypolitic is on Slack, it has the ability to have mini-support groups within the larger group. This is a reminder that it has specific (private) channels for #LongCOVID patients who are:

1. Medical professionals
4. Men 1/
There is also a new Japanese-language channel for Japanese-speaking #longhaulers! cc @ygjumi 2/
There are a total of 61 channels on many topics, including symptom-specific channels (neurological, endocrine, reproductive health, GI, circulatory), but also advocacy, financial concerns, parents/#LongCOVID children, vaccine responses, & many more. If you are suffering, join! 3/
Read 4 tweets
27 Mar
It has been *amazing* to see so many patient researchers with #LongCOVID. Here's another paper from the UK with folks from @long_covid support group - huge congrats @Dr2NisreenAlwan, @ClaireHastie1, @Know_HG, @dgurdasani1, & team!

A few findings that stood out: 1/
This is a big deal: adequate rest in the early weeks was protective against a more severe #LongCOVID category (measured by fatigue, ability to work, care for self, etc).

Also! Higher income was protective against ending up in this category as well. 2/

Those are two factors that are crucial to talking about #LongCOVID recovery: people need adequate time to rest, and there are huge inequalities in who is able to and can afford to do that! 3/
Read 9 tweets
26 Mar
A year ago today I had my first COVID symptoms, and I never recovered.

It feels fairly impossible to process what being sick for a year has been like, and what this year of watching #LongCOVID awareness and advocacy unfold has been like, but some thoughts: 1/
The first week of being sick was the easiest. I remember marking my calendar to donate plasma at the point I expected to be symptom-free, but that never came. The sirens in NYC were nonstop at that point. I watched my neighbors get taken away in ambulances. 2/
Every night from 2-4am the neighbor closest to my bedroom window had a coughing fit. It was so weird and horrifying to know we were all experiencing the same thing. In those days living in NYC was a horror show while the rest of the country had no idea how bad it was. 3/
Read 20 tweets
22 Mar
An excellent piece by @DocAmali on why COVID and #LongCOVID support groups need to be ethical in their practices, including protecting the privacy of the patients who participate. Otherwise, they risk "objectification and exploitation of vulnerable participants."
This is why @itsbodypolitic is a private, patient-only support group hosted on a platform that doesn't exploit participant data, and has rules that explicitly prohibit scraping of support group data! #LongCOVID

@DocAmali's call to action: "Governments & regulators internationally should collectively develop policies to combat unconsented use of social media data for healthcare research, & also bring in new laws to prohibit unethical data mining of social media platforms."
Read 4 tweets

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