Thread by @ahandvanish

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!

1/

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.)

2/

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.

3/

In people with weakened immune systems (including HIV, cancer, ME/CFS), or after a big immune hit (i.e. COVID), they can become ongoing & cause additional issues.

For instance, Kaposi sarcoma showed up in AIDS patients due to reactivations of HHV-8, which causes that cancer.

4/

Other viruses can cause other cancers. Mono, also called Epstein-Barr (EBV), has been associated with several types of cancers, including lymphomas, nasopharyngeal cancer, stomach cancer, & others. Herpes simplex can lead to cervical cancer.

5/

All of this is to say three things:

First, a large % of people with #LongCOVID (including #LongCovidKids) have these reactivations. We're seeing people with untreated CMV or shingles lose part of their sight. We're seeing people with reactivated EBV & HHV-6 without options.

6/

These need to be tested & treated. ME doctors often prescribe Valcyte or Famvir, which work in some patients (not all, in part bc they're not EBV-specific). But most providers don't know to look.

And these meds don't work for all. We need more research & treatment options.

7/

(A side note that if you are a #LongCovid patient or provider, it helps to order the EBV Early Antigen test in addition to the EBV panel to see if it's a reactivation).

Also, it's possible to have a reactivation even if you never knew you had mono!

cdc.gov/epstein-barr/l…

8/

Secondly, we're starting to see researchers do a lot of the same research that has already been done in other post-infectious illnesses. #LongCovid researchers need to learn about this history & build on existing studies.

9/

ncbi.nlm.nih.gov/pmc/articles/P…

There are endless consequences to the impact of these long-term activations, and they (and related viruses) have been studied a lot in the context of Myalgic Encephalomyelitis:

me-pedia.org/wiki/List_of_h…

me-pedia.org/wiki/List_of_e…

10/

One researcher I'm following closely is Dr. Bhupesh Prusty, who studies HHV-6 & others in the context of ME. He found that HHV-6A RNA (also found in other herpesviruses) is able to prevent mitochondria from participating in antiviral defense!

solvecfs.org/dr-bhupesh-pru…

11/

Third, we need to do long-term followup on these patients to see if there are increased risks of cancers and other problems down the line.

Stopping the thread here because I'm out of spoons but I'll add to it later! #LongCovid

12/