I've started to hear cases of people who got COVID twice - who recovered the 1st time, but got #LongCovid the 2nd.

This is in line with everything we know about infectious-onset conditions. The body cannot sustain hit after hit to the immune system without consequences.

We saw reinfections start happening last summer for the first wavers. The research below shows reinfections could happen as early as 4 months after infection. 2/

In endemic conditions, reinfection would likely happen after about 1.5 years.

People with #LongCovid have dysfunctional T cell responses, they have decreasing NK cell functionality - these aren't things that just go away. These are things that will make people worse with subsequent hits. We know that many #pwME get worse after each subsequent infection. 4/
So learning about understanding reinfections is one of the biggest priorities for us to make good policy decisions - both for people with #LongCovid who are already sick, and for people who were safe the first time but are unknowingly primed to get #LongCovid on reinfection.


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More from @ahandvanish

6 Oct
The WHO's Clinical Case Definition for #LongCovid is up!

Symptoms include fatigue, shortness of breath, cognitive dysfunction, memory issues, post-exertional malaise, menstrual & period problems, altered smell/taste, blurred vision, chest pain, dizziness, intermittent fever...1/
cough, gastrointestinal issues (diarrhea/constipation/acid reflux), abdominal pain, headache, joint pain, muscle pain/spasms, neuralgias, new onset allergies, pins & needles sensations, depression, sleep disorders, tachycardia/palpitations, anxiety, tinnitus & hearing issues.
The larger description and process is published here:


Read 4 tweets
2 Oct
Turning a Corner in ME/CFS Research: mdpi-res.com/d_attachment/m… #pwME #LongCovid

ME/CFS is a multi-system disorder, with dysregulation of the HPA axis and of metabolism of the central nervous system and of body systems generally. The range of abnormal responses includes:

1/ Image
-alteration of autonomic nervous system function
-lasting adaptations in energy metabolism and the immune response
-orthostatic intolerance with reduction in cerebral blood flow on tilt testing
-variations in cortisol levels associated with increased fatigue. #pwME

-disorganized circadian rhythms
-increased immune system activation as shown for example by increased pro-inflammatory cytokines and prolonged inflammatory responses
-alterations in muscle anaerobic threshold
-abnormal recovery after activity with post-exertional malaise
Read 5 tweets
23 Sep
I feel bad for everyone who was exploited in this article. The blame obviously lies with the author; I can't get over the fact that there are people willing to try to discredit the experiences of millions of people, in exchange for some funding behind the scenes.


I also think there were advocacy gaps that allowed this to happen. And I feel frustrated, because this harms our whole movement.

I hope #LongCovid groups take away a few lessons from this, including:

Advocates must be historically informed. There's a long history of...

discrediting virus- and infection-initiated illnesses, in many cases starting with articles just like these. This happens constantly in ME & Lyme & happened early on with AIDS & other illnesses, & has started ramping up with #LongCovid.

Read 14 tweets
31 Aug
Let's talk about...herpesviruses! And other reactivations in #LongCOVID.

When most people hear "herpesvirus" they think of STDs. But herpesviruses are a virus family, like coronaviruses.

Mono is a herpesvirus. So are shingles & chicken pox. All humans have at least one!

Less familiar herpesviruses include: Cytomegalovirus (CMV, which ~50% of people have by age 40), Human-Herpesvirus-6 (HHV-6, which ~100% of people have), and Human-Herpesvirus-8 (HHV-8).

(Side note that this is all an explanation for laypeople, so I'll be simplifying a bit.)

Herpesviruses are lifelong infections, but are usually latent, meaning they aren't "active". When the immune system is healthy, most people can keep them at bay. During times of illness/stress or in response to certain triggers (food, heat, hormones), these can flare up.

Read 12 tweets
30 Aug
New CDC study finds that 36% of COVID patients *never seroconvert*, meaning they NEVER make antibodies! #LongCovid

This is a huge finding which we need to amplify broadly! Please retweet & send to providers, patients, support groups, #MedTwitter, etc.

They found two major risk factors that predicted a lack of seroconversion:

A) Age: people under 40 are statistically less likely to make antibodies. #LongCovid

B) Small viral load: people who had higher PCR Ct values (meaning the test had to run more cycles before returning positive) were also less likely to seroconvert. This implies mild and asymptomatic cases are less likely to seroconvert. #LongCovid

3/ Image
Read 7 tweets
28 Aug
This age-adjusted data from Israel shows a deep decrease in vaccine effectiveness against symptomatic COVID infection for people who got vaccinated in January-February. #LongCovid

1/ Image
This was measured 2 months ago. Now that it's almost Sept, vaccine effectiveness for those vaccinated in April is likely close to the Feb numbers here.

And in the past few weeks, we've started seeing more breakthroughs from people who got vaccinated in April. #LongCOVID

Read 4 tweets

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