#TREATME
Check out the charts for #longCOVID & #MECFS to see how enzymes like NK stacked up against aspirin, Plavix, DOACs (example: apixaban), and heparin. I won't do a deep dive until I gather more data & close the survey but wanted to share some data so far!🧵
Very Quick thoughts:
1) Oral anticoagulants alone looks subpar in #pwLC likely bc they only prevent clot formation & don't degrade existing microclots. Goal is to give body a break so it may clear clots on its own, but some may be too sick to achieve this.
1) cont..
Also note small sample size, so can't draw strong conclusions yet.

2) Many #pwLC may have hyperactivated platelets so it would stand to reason than antiplatelet meds would help. While just 38% reported aspirin ALONE helped, 60% benefited from dual antiplatelet therapy.
3) In #pwME, sample sizes were much smaller so I was unable to break down as many subgroups. I really need more #pwME to answer this survey. I know you're out there. 🥰 But it's interesting to note that HEPARIN was a shining star in both #pwME & #pwLC, helping almost 75%!
3) continued:
In #pwLC who took heparin + antiplatelets, 9 in 11 (82%) reported benefits & 87.5% reported "quite a few" of their symptoms significantly improved. Not sure why heparin might work better than oral anticoagulants. More studies with more participants needed obvs.
4) Quite a few w/ antiphospholipid syndrome are taking direct oral anticoagulants (DOACs). A large study came out last month concluding that those w/ APS should be on warfarin and not DOACs due to ⬆️ risk of clots in the latter. Talk w/ your dr about this.
jacc.org/doi/10.1016/j.…
5) NK & LK +/- SP stack up well here. No surprise considering that NK & LK directly degrade fibrin in clots whereas anticoagulants only prevent clot formation. ~65% improved on NK+SP (n=167) & LK (n=39). This doesn't even consider dose or formulation, so 65% is extra impressive.
6) Notably, 41% of lumbro respondents took Boluoke, the gold standard for LK, & none reported feeling worse. Respondents reported best results w/ Boluoke vs other LK brands. Almost 66% & 75% of #pwME & #pwLC who paired LK with SP or took LK + NK + SP improved.
There's lots more to go into, but I was excited & wanted to share a general overview of what I'm seeing so far in these treatments.😊If you know any #pwME or #pwLC on anticoagulants, antiplatelets, or NK/LK/SP, pls direct them to my #TREATME survey.
surveymonkey.com/r/TREATMEANDLC
Disclaimer:
Remember this is all preliminary data & I'm not considering durations of treatment, doses or formulations here. I will do all that at a later date once I get more data.

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More from @organichemusic

Feb 17
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?
Read 7 tweets
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

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