With the FDA public meeting for #LongCovid coming up tomorrow, it's a good time to think about: what kind of drugs *could* we trial for #LongCovid?
The possibilities are honestly endless! Here is a sampling (absolutely not inclusive):
1. JAK-STAT inhibitors (Barcitinib, Rituximab)
2. Anticoagulants/antiplatelets (including supplements like Nattokinase/serrapeptase & Pycnogenol, but also Sulexodie, Sildenafil, statins, and triple therapy protocols)
3. Antivirals for reactivation of latent viruses (Valcyte, Famvir, Valacyclovir, Artemisinin), also EBV vaccine when available
4. Intravenous immunoglobulin (IVIG), for many reasons but esp for those with Small Fiber Neuropathy
5. Antivirals against COVID (Remdesivir, Molnupiravir, Paxlovid)
6. Beta blockers (esp for those with POTS)
7. Ivabradine (incl for those with POTS)
8. Drugs that regulate brain's microglial cells, including Low Dose Naltrexone (LDN) & Low Dose Aripiprazole (LDA)
9. Prescription mast cell stabilizers (Ketotifen, Cromolyn sodium - the latter esp for gut symptoms)
10. Anti-CGRP medications (Emgality, Ajovy, Aimovig, Nurtec, Qulipta) (esp for those with migraines)
13. GI targets (Lactoferrin, drugs that improve gut permeability, specific probiotics esp non-histamine inducing ones & strains based in existing research; also cromolyn sodium from #9)
14. Mestinon (esp for Post-exertional malaise)
15. Modafinil (esp for nerve, cognition, & POTS)
16. Midodrine (esp for POTS)
17. Colchicine & Spironolactone
18. Peptides, esp for the subset with connective tissue issues/resulting craniocervical instabilities
These are options collected by researchers & patient advocates and are being formalized in a clean document to be released shortly, but I wanted to put them out & gather feedback and see what's missing from this list (or shouldn't be on here)?
1) Stephanie, had respiratory symptoms, did a #LongCovid clinic, got pulmonary rehab, included treadmill & bike, 24 sessions of respiratory rehab bc that's what insurance covered, but she is still continuing alone, took amantadine but didn't like it
2) Jackie, #LongCovid since Jan 22, has new onset ME/CFS & dysautonomia for COVID. Was prescribed exercise, learned the hard way that it was harmful. Bad PEM. Learned pacing, still uses pacing. "Exercise still causes me harm now." Takes >30 pills/day. Treated inhumanely.
Jackie: finding providers who know how to treat ME/CFS and dysautonomia helped most, uses IV hydration to prevent ER visits. Uses hormone replacement therapy, MCAS treatments, midodrine, and others. Treatments need to address autonomic dysfunction, viral persistence, & others.
A clarification of my Republican tweet & then I can’t spend more spoons on this:
I was communicating what I’ve been told by people in Congress (which is why “COVID is dead” is in quote tweets - meaning not my words!)
I wasn’t communicating my own beliefs or opinions. 1/
I don’t think & have never said we need to disassociate #LongCovid from the pandemic. Anyone who says or implies otherwise is not being truthful.
2/
Despite what it may seem, I’m not in the “mild” #LongCovid camp. I only have a few hours a day of being present & functioning, & I spend 90% of them working/advocating. 3/
Strong paper on cognitive impairment in young #LongCovid patients shows that younger patients have *worse and more marked* cognitive impairment compared to older patients!
Cognitive impairment was also found in 85% of the LC patients.
Of 22 cognitive tests, 16 tests were worse in younger patients! Only 1 was worse in older patients.
5 tests were not significantly different between the two groups. #LongCovid 2/
Younger #LongCovid patients showed cognitive impairment in any domain more often that older ones AND the severity of cognitive impairment was greater in younger patients. 3/
LCME is more severe; 55% of LCME had severe fatigue vs 33% noME
At 17-20 months, 46% of LCME had severe fatigue vs 3% of noME (!!!)
2/
PEM:
PEM duration, severity, and frequency was all higher in LCME. PEM duration did not improve for either group over time, but severity and frequency did slightly.
For a subset (17%) of LCME, PEM duration improved over time enough to not meet the CCC criteria for ME/CFS.
3/
I have ME/CFS from COVID. I also have dysautonomia from COVID. There are specific definitions for each condition.
It wouldn't be possible to solve #LongCovid without also solving these, because for millions of us (prob about half of people with LC), LC *is* these conditions. 1/
Researching them as part of LC does not exclude researching other conditions that come from COVID (including clots and other vasculopathies, which have also been shown & hypothesized in these conditions).
More importantly, though, why would we want researchers to start from scratch? *All* post-viral illnesses are complex illnesses & I don't want researchers to waste time relearning that other viruses get reactivated or the immune dysfunction type changes over the first years 3/