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LongCovidPharmD Profile picture
@organichemusic
Dec 27 • 3 tweets • 2 min read • Read on X
📢For Long COVID patients interested, please refer to this data sheet which shows the following gathered from 1,800 LC patients (see individual tabs):
1) LC Symptom (sx) data organized by tx
2) LC sx data organized by sx
3) Overall treatment response
docs.google.com/spreadsheets/d…
Effect % is highlighted in gradients of green and red, representing positive & negative results, respectively. Data is shown in order of effect %. Sample sizes for individual responses (i.e., slightly/moderately/much better or worse) is shown further to right. Examples: Example of data organized by treatment
Example continued, showing the number of patients who selected each possible response option (slightly worse, moderately worse, etc)
Example of LC symptom data organized by symptom
For Overall treatment results in long COVID only, see last tab and scroll to the far right, also linked here. Only treatments with 20 responses or more were included in all data sheets.
docs.google.com/spreadsheets/d…

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More from @organichemusic

LongCovidPharmD Profile picture
Dec 26
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 Quoted from study publication: Why carry out the study? Long COVID-related fatigue affects millions of people across the world, with increasing numbers experiencing long-term disability as a consequence. A manual osteopathic approach initially has been developed for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The purpose of this study was to determine if it was possible to treat people with long COVID-related fatigue with a self-directed adaptation based on the established ME/CFS treatment. What was learned from the study? This feasibility study suggests th...
Image
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 1) Nasal release Rest elbows on table; place tips of index fingers on either side of the nose (above the bridge); gently pull down/press up for 7 min for the first 10 days, followed by 1 min thereafter 2) Facial massage With fingers spread out, apply a little pressure and gently stroke down the face for 20 s (five times taking 4 s each) 3) Head massage a. Gently stroke down the side of the head for 20 s each side b. Gently stroke down the back of the head for 20 s 4) Neck massage (use oil) Down for 20 s each side simultaneously or one after the other, whichever you find best 5) Breast m...
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
Read 5 tweets
LongCovidPharmD Profile picture
Sep 22
Covid Cautious folks,

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👇 From the website of the covid cautious school: The Hearts and Minds Learning Community operates under a community care model. Many of our participants have medical conditions that put them at higher-risk for severe disease or negative outcomes from infectious diseases. Just as classes shave their heads in solidarity with classmates undergoing medical treatments, the learners at HMLC wear masks indoors to care for and support each other, regardless of medical necessity. MASKS: We believe superheroes wear masks! * Masks are required for all indoors time at HMLC. * Currently, masks are op...
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 Screenshot of front page of Moon Palace Books that states "Masks are required for everyone in the store!"
Shows screenshot of wastewater testing graph in metro area of Minnesota
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! Photo of person in a Zimi KN100 mask sitting in a Saint Paul, Minnesota residence getting a Portacount Fit Test with a masked volunteer who is wearing a Drager N95 attached to a modified Broad AirPro portable hepa.
Read 7 tweets
LongCovidPharmD Profile picture
Nov 30, 2023
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.🧵 Health conditions before & after COVID in Long COVID patients (n = 214) - summarized in tweets below
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.
⬇️
Read 6 tweets
LongCovidPharmD Profile picture
Nov 19, 2023
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!

Treatments⬇️
Read 7 tweets
LongCovidPharmD Profile picture
Oct 4, 2023
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.👇 Figure illustrating that compared to dextrose 2% in water, sencha, matcha, black tea and bottled green tea beverage at final concentrations of 90% of original tea beverage significantly reduced viral titers of SARS-CoV-2.
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.
Graphical depiction showing that green tea candy significant reduces viral titers ~1000x over a 5 minute timespan whereas placebo does not
Image
Read 8 tweets
LongCovidPharmD Profile picture
Jul 4, 2023
Dear Friends,

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⬇️
Read 6 tweets

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