The outrage and bewilderment I feel when I see ME/CFS & Long COVID researchers/advocates/HCWs maskless at indoor events...🤯

Maskless LC advocate? Isn't that an oxymoron?

I wonder: How much do these unmasked "allies" actually care about the people they claim to support?
🧵
Are they so ignorant that they believe "masks don't work"? or that vaccines stop transmission? or that Paxlovid is a panacea?

-If they ARE that uneducated, how can their work in the field be trusted?
-And if they ARE properly educated but STILL choose not to mask...😵‍💫
How well can these unmasked "allies" *truly* understand LC or other post-viral illnesses?

-Do they not understand that ANYONE at ANY age & ANY health status can fall victim to Long COVID?

-Do they not understand the intense level of suffering that #pwLC & #pwME endure?
If these unmasked "allies" TRULY believed that #LongCOVID & other post-viral illnesses can & do DESTROY health & quality of life, wouldn't they wear a mask to protect themSELVES, at least?? Even if they don't care about others? How can they go around unmasked knowing this?
-Do they think they're somehow stronger or better than most others? invincible? a superior breed?👽
-Are they like Bob Wachter & think they're so smart that they can risk-calculate their way out of illness (never mind if others are collateral damage due to their miscalculations)?
What's puzzling is these unmasked "allies" don't have any shame when flaunting their maskless lifestyle on social media.

Apparently their priority is fitting in w the maskless masses at the expense of others, incl. the very people they claim to support, protect, & even treat. 😡
If you're a HCW, WEAR A MASK! Your job is to help pts get better, not worse.

If you're an LC or ME advocate/researcher, WEAR A MASK! Your role is to support pwME & pwLC, and that means masking in public.

And if you're anyone else, be a decent person & WEAR A MASK around others!

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More from @organichemusic

Feb 7
Reviewing preliminary data from the survey (n=1,750!), here are some early observations on a few treatments:

1) Both #pwLC and #pwME benefit remarkably similarly from LDN. Check out the almost identical survey results for overall benefit & number of symptoms improved.
2) People are more likely to benefit from CoQ10 at doses 200 mg or higher, but even then, their overall condition improves only slightly.

2) Both #pwME & #pwLC benefit from anticoagulants (more on this another time - very interesting stuff!).
3) There is a clear increase in benefit when adding on antiplatelets to anticoagulants, but aspirin alone does not help many (78/255).

4) Interestingly, HEPARIN may be more beneficial in both pwME & pwLC than direct oral anticoagulants.
Read 10 tweets
Feb 5
Hi everyone!

I am very excited to announce that I have finally completed a massive #ME/CFS & #LongCOVID treatment survey entitled "TREAT ME"‼️🎉🤩

If enough people respond thoughtfully, I’m confident we may push research in the field forward!🏇
🧵1/3

surveymonkey.com/r/TREATMEANDLC
TREAT ME covers 150+ medications & supplements. Treatments were selected based on published trials, case reports, other relevant studies, results of earlier surveys I’ve written, direct patient accounts (incl lots of feedback from many of YOU🥰), and my own pharmacist intuition.
The survey has been granted IRB exemption.👍

Furthermore, @OpenMedF will be reviewing a summary of the survey results as they gather info for prospective research studies🤩😍

PLEASE join this effort to investigate #ME & #LongCOVID treatments!
Read 6 tweets
Jan 10
🚨When assessing cardiovascular risk, history of COVID should be considered a risk factor for cardiovascular disease.

Official treatment guidelines should be updated to account for frequent SARS-CoV-2 reinfections & Long COVID.🧵
jamanetwork.com/journals/jama/…
For example:

This atherosclerotic cardiovascular disease (ASCVD) risk calculator estimates the 10-year risk of ASCVD.

One problem: the tool does NOT consider history of COVID & thus likely underestimates risk in this enormous new population.
👇
tools.acc.org/ASCVD-Risk-Est…
The risk calculator is often used to help guide therapy decisions. For example, USPSTF determined that for primary ASCVD prevention, aspirin use has a small net benefit in those aged 40-59 with a ≥10% ten-year risk of ASCVD, but not in those age 60+.
👇
jamanetwork.com/journals/jama/…
Read 4 tweets
Dec 29, 2022
"I have COVID! What should my kids & I take to reduce chances of severe illness and Long COVID?"

This post covers my current best bets for speeding up COVID recovery and reducing the chances of Long Covid in adults & kids. I’m focusing on...🧵

pharmd.substack.com/p/i-have-covid…
...accessible evidence-based treatments w/ a good balance of safety, tolerability & efficacy.

I discuss:

3 sleep supplements w/ add'l antiviral benefits
5 best bets
4 hon. mentions

Also included:
Treatment & dosing schedule that optimizes efficacy & avoids drug interactions
I also discuss:

Dosing for both adults AND kids
How to optimize absorption w/ low bioavailable supps
When/how to take
Drug interactions when applicable
Brands
How one might combine all 12 of the treatments covered if desired
in vitro vs in vivo concentrations & calculations
etc
Read 7 tweets
Dec 20, 2022
Any #pwLC or #pwME tried CITOCOLINE?

Citocholine = cytidine + choline

Cytodine metabolizes quickly to uridine. Choline & uridine cross the blood brain barrier, promoting neuronal membrane phospholipid synthesis & reducing peroxidation.

ncbi.nlm.nih.gov/pmc/articles/P…
In COVID and perhaps ME, the blood brain barrier can become leaky, precipitating microglial activation and neuroinflammation.

In vitro studies have found that citocoline improves the endothelial barrier function impaired by hypoxia.

ncbi.nlm.nih.gov/pmc/articles/P…
Other potentially beneficial effects of citocoline:
-stimulates ACTH & may ⬆️ cortisol
-improves expression of SIRT1, thereby supporting nerve cells, ⬇️ NF-KB & ⬆️ autophagy
-enhances norepinephrine, serotonin, dopamine, & acetylcholine
-improves cerebral blood flow
Read 8 tweets
Dec 17, 2022
HIGH-DOSE EPA for LongCovid or ME/CFS?

Recently I spoke w/ an MD who has treated ~40 #pwLC with an Rx omega-3 fatty acid similar to EPA known as icosapent ethyl (IPE, brand name Vascepa) w/ promising results. Turns out, it may help #pwME too.

Details👇
pharmd.substack.com/p/high-dose-ep…
Even patients who had suffered from Long COVID for over two years reportedly experienced improvements in sense of taste & smell, fatigue, sleep, joint pain, brain fog, and hair/nail growth.
onlinescientificresearch.com/articles/propo…
This MD also treated ~140 acute COVID pts w/ IPE and reportedly none of them developed LC. The MITIGATE trial is currently investigating the ability of Vascepa (IPE) to reduce morbidity & mortality in a cohort of adults with URIs including SARS-CoV-2.
ncbi.nlm.nih.gov/pmc/articles/P…
Read 28 tweets

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