1) what % of respondents benefitted over all levels of reported improvement (≥15%) 2) what % of respondents experienced worsening of symptom 3) what % of respondents benefitted at least moderately, *excluding* slight improvements (≥35%)
Please note the following caveats:
1) Results may be slightly skewed bc some respondents answered that a supplement they didn't take had "no effect" rather than simply skipping the question. Initially I tried to correct for this but it was impossible to discern in some cases.
2) Note significant differences in sample sizes between supplements. Supplements with much lower sample sizes (Vedicinals = 44, Tollovid = 48, and cromolyn = 62 respondents) may be less accurate, so take those results less to heart.
First up is FATIGUE.
Top 3 *overall* (≥15% improvement) are:
🥇NK/LK +/- SP (no sig dif whether or not SP was included)
🥈Antihistamines
🥉Niacin
Notably, Vedicinals shows the greatest *worsening* of fatigue but also jumps into 🥇 when comparing efficacy w/ ≥35% improvement.
Second up is COGNITIVE FUNCTION
Top 3 *overall* (15-100% improvement) are:
🥇NK/LK
🥈Antihistamines
🥉B complex
Vedicinals shows the greatest *worsening* of cognitive effects, but also jumps into 🥈 when comparing efficacy w/ ≥35% improvement.
Last up (for now) is heart rate variability & POTS-like symptoms
Top 3 *overall* (15-100% improvement) are:
🥇NK/LK
🥈Antihistamines
🥉NK/LK + SP
Yet again, Vedicinals shows the greatest *worsening* of HRV/POTS, but jumps into 🥈 when comparing efficacy w/ ≥35% improvement.
I may add more analysis later when more time.
With these results, it opens up opportunities for better & more targeted surveys. May want to focus on the top supplements, add a few new ones, & go into more details about dosing & other symptoms. Interested in another survey?
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Pilot study published in Infectious Diseases & Therapy this week found feasibility of a manual lymphatic drainage RCT in pwLC. While the study wasn't powered to test efficacy, CFQ-11 data suggested better outcomes in the intervention grp. A larger RCT is set for 2026.
🧵1/5
Note these ostensible improvements were achieved w patients administering a self-help version of a manual osteopathic approach as described here (and shown in video to participants). With further professional guidance or administration, results could be significantly better. 2/5
In a 2022 study, 20 LC patients *did* receive in-person weekly treatment sessions with Perrin technique practitioners. Participants also undertook "daily self-massage along with gentle mobility exercises." Symptom severity was recorded before & after treatment with PFRS.
3/5
Looking to relocate somewhere more CC-friendly?
Here's 5 reasons why you should join me in St Paul/Mpls, MN!
1) Mpls boasts a CC school that requires masks, monitors CO2 (& adjusts to keep CO2 levels safe), & uses air purifiers. Rare & awesome!
🧵1/6👇
2) Active & collaborative CC community in a progressive metro area, including:
-Top-notch wastewater monitoring
-Covid-safer events: dance parties; theatre games; plays; piano, yoga, swimming & dance lessons; birding; Plus Life playdates; & more!
-Masks-required bookstore
3) Free Portacount Fit Testing:
One member of the CC community volunteers their time & travels to houses around the Twin Cities with their Portacount to fit test those who want to ensure good mask fit. This service is SO valuable & I've learned so much from hours of fit testing!
In a new version of my TREAT ME survey, I presented a list of health conditions and asked long haulers to indicate if they had each condition *before* or *after* COVID, if at all. The results suggest that MANY long haulers develop new & disabling conditions post-acute COVID.🧵
For example:
👉5% reported immune dysfunction pre-COVID, while 21% developed it post-acute COVID.
👉1.9% had POTS pre-COVID, while 41% developed it post-acute COVID.
👉0% had ME/CFS pre-COVID, while 46% developed ME/CFS post-acute COVID.
⬇️
👉27% had migraines pre-COVID, while 24% developed migraines post-acute COVID.
👉2.8% had MCAS before COVID vs 16.4% post-acute COVID
👉1.4% had clotting disorders pre-COVID, while 11% developed clotting issues post-acute COVID.
⬇️
People w MIGRAINES may be predisposed to develop ME/CFS or Long COVID.🧵
"Post-COVID headache" is well-known, and many w/ pre-existing migraines notice their migraines worsen post-COVID. This makes sense as both Long COVID & migraines can involve impaired neurovascular coupling.
Based on my survey data, it appears a disproportionately large % of pwME & pwLC had migraines before developing ME or LC:
In the general population, ~6% of men & 17% of women experience migraines. In those w/ LC, however, 11% of men and 31% of women reported pre-LC migraines.⬇️
It's nearly the same in the ME group w/ 12% of men & 31% of women reporting pre-ME migraines.
Another 24% & 21% of those w/ LC or ME reported experiencing new-onset migraines after developing LC or ME.
Migraines in ME & LC are a big deal & warrant further study!
More evidence supports the use of both GREEN TEA and BLACK TEA to battle COVID.
This further strengthens my past recommendation to swish, gargle and drink green (or black) tea for COVID mitigation and prevention. nature.com/articles/s4159…
Study confirmed that EGCG in green tea & TFDG in black tea bind to the RBD of the spike protein & inactivate multiple SARS-CoV-2 variants to varying degrees.
Authors also found that the SALIVA in those who consumed black/green tea candies for 5 minutes reduced viral titers.👇
Compared to placebo candies, the black & green tea candies reduced viral titers by ~1000 order of magnitude. The effects lasted for about 5 minutes, wearing off likely due to quick saliva flow rate.
How are you? I've been on a Twitter break, but I wanted to provide an update.
First, the main reason for my break was that I found a more covid-safe school out of state for my child, so I've been traveling and figuring out the logistics for relocating.⬇️
The school has very sophisticated HVAC system with 6-7 air changes per hour! Plus the classroom sizes & overall population are smaller. Overall I feel thrilled to have found this place, but as you all know, moving is incredibly stressful & exhausting even for a healthy person!⬇️
The school is expensive as is the cost of living in the area so I've been looking for a job to help cover tuition. However, retail pharmacies don't want masked pharmacists & remote jobs are hard to find, esp with so many disabled #pwLC competing for part-time remote positions⬇️