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!
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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.)
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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.
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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.
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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.
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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.
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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.
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(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!
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.
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:
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!
I've been doing #TheNicotineTest (via 7mg patches) for a month now & it has greatly improved my quality of life.
Major caveat: I'm on ivabradine. The nicotine increases heart rate, & I wouldn't recommend to anyone w POTS who isn't on beta-blockers or ivabradine. #LongCovid 1/
The biggest change is feeling like I have more *oxygen* circulating in my body - the weird altitude-sickness feeling is lessened.
Major improvements to cognition/awareness (esp executive functioning & processing), and improved physical capacity and overall baseline. 2/
The first tolerance break I felt more air hunger and worse baseline than pre-nicotine, but every other tolerance break has been equal or better than pre-nicotine.
It feels like an excellent symptom management tool, but *not* a cure. 3/
This could cause additional impacts like deficits in platelet energy metabolism, or hormonal dysregulation (because platelets carry serotonin) #LongCovid
Because this video has caused so much willful misinterpretation, I want to clarify: in the clip I’m countering the myth that #longcovid is lingering symptoms of acute COVID, since many people think it’s just a cough. I should‘ve said “acute COVID”; brain fogged & trying my best.
The interview was an hour long & they edited it to 5 min. I talked their ear off about all hypotheses & the science behind each & it didn’t make it in - the piece was for a general audience. I talked about all the other things COVID can cause, include diabetes & clots, at length.
Anyone who is suggesting I don’t think #longcovid is from COVID (????) or that I don’t think viral persistence is a high priority hypothesis (????) are *actively* ignoring 3.5 yrs of advocacy & that I’ve been highlighting viral persistence since 2020
The most exciting hypotheses in #LongCovid and #pwME are ones that could have cures! This includes viral persistence and others, and also includes the itaconate shunt hypothesis. I'm going to tweet this video as I watch it to try to explain it more 1/
Dr. Ron Davis used to work on the Human Genome Project but switched to ME/CFS when his son got sick. He's the director at the Stanford Genome Center. He is focused on *a cure* for ME/CFS. "I believe it is a curable disease." 2/
He describes the common onsets of ME - usually viral, but can have other causes too, refers to a big parasite onset in Norway from a few years ago 3/
@TheCrankyQueer: highlight the need for trans inclusion in trials, including understanding how different labs may present; biomarker nuance
Oved Amitay: need to create a center of excellence to learn from trials in other diseases 1/
Oved: FDA needs to align on decisions across similar fields, needs cross-talk across similar groups
@Dysautonomia: Most even great researchers don't understand autonomic disorders, which happen in up to 2/3 of LC...is there an opportunity to offer autonomic training? 2/
@Dysautonomia: Also, need to make arms in these trials for pre-Covid POTS/MECFS - this helps learn about LC as well (ie does Paxlovid help pre-covid pts)
"Fatigue turns the most mundane of tasks into an “agonizing cost-benefit analysis,” @turnoftheshrew said. If you do laundry, how long will you need to rest to later make a meal? If you drink water, will you be able to reach the toilet?"
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"Only a quarter of long-haulers have symptoms that severely limit their daily activities, but even those with “moderate” cases are profoundly limited. @julialmv still works, but washing her hair, she told me, leaves her as exhausted as the long-distance runs she used to do." 3/