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Hannah Davis 🦈 Profile picture
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14 Apr, 6 tweets, 3 min read
This is a *wild* but must-read story: a professor of psychology tries to convince insurance companies that #LongCOVID is not real, but that it was made up by @GeorgeMonbiot who wrote a January 2021 column on it.

1/
The catch: this psychologist has been doing this for every post-viral illness (like ME), because he has made a career off Cognitive Behavior Therapy as a "cure" - and continued to push it even after it was rated "low-very low" scientific quality. 2/
A entire special issue in the Journal of Health Psychology noted that this guy & his team showed a "consistent pattern of resistance", were "unwilling to enter into the spirit of scientific debate", & "acted with a sense of entitlement not to have to respond to criticism." 3/
These folks are the AIDS deniers of our time. They're on the wrong side of history, and that will be their legacy. #LongCOVID

4/
I also really recommend reading @GeorgeMonbiot's whole thread, which gets into this at more detail.

I'm really surprised this is not more well-known story of scientific failure and ego, causing great harm to thousands of patients over decades.

5/
The psychology professor & his team called anyone who criticized their methodology & requested the data a "harasser." They pushed this narrative as hard as they could, including writing off literally hundreds of patients requesting data as "harassers".

6/

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More from @ahandvanish

Hannah Davis 🦈 Profile picture
6 Apr
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%

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%.

3/
Read 4 tweets
Hannah Davis 🦈 Profile picture
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":
2/
"Emerging Roles for the Immune System in Traumatic Brain Injury" 3/

Read 9 tweets
Hannah Davis 🦈 Profile picture
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/

medrxiv.org/content/10.110…
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
Hannah Davis 🦈 Profile picture
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
2. BIPOC
3. LGBTQ+
4. Men

wearebodypolitic.com/covid19 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
Hannah Davis 🦈 Profile picture
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
Hannah Davis 🦈 Profile picture
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

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