How has COVID-19 vaccination affected your #LongCovid symptoms?
With 654 responses to this question so far:
52% no change (or fleeting changes ≤ 1 wk of vaccine)
28% worsened❌
17% improved✅
3% a mix
How long did benefits or relapses last? See next tweet⬇️
Of the 111 who IMPROVED post-vaccination, ~50% improved long-term.
Thus ~8.5% of those vaxxed with #LongCovid enjoyed some degree of LONG-term benefits post-vaccine, while another 8.5% experienced just TEMPORARY benefits (from several weeks up to several months). 2/x
In Long Covid sufferers who IMPROVED with vaccination, the most commonly reported experience was a LONG-term & SLIGHT improvement (29/654=4.4%).
The most RARE experience was significant long-term improvement (8/654 = 1.2%).
What about those who worsened? Read on. ⬇️
3/x
Of the 28% #pwLC who WORSENED post-vax:
77 felt worse temporarily
101 felt worse long-term
The most common experience among this population was a SIGNIFICANT LONG-TERM worsening (54/654=8.3%).
Overall, 101/654 or 15.4% #pwLC reported feeling worse long-term post-vax.
4/x
VACCINE-INDUCED LongCovid (SEPARATE data from above)
71 of 1,193 (6%) reported vax-induced LC.
HALF (35) were females aged 30-50 yrs.
Symptoms were triggered by the FIRST vaccine in 63%.
Of the 20 vaxxed AFTER their vax-induced LC, 13 felt worse, 8 no change, & none better.
One last thing:
Consider how another round of COVID may affect your LC. I strongly suspect it would do MORE damage than the vaccine in most cases & with much greater frequency than the vax's reported 28%. How well are you willing/able to protect yourself from reinfection?
In my case, I am taking very strict precautions to avoid infection, so I have opted to skip booster #4. Only curbside pickup for groceries. No visitors, no social events, nothing. When outdoors, I stay away from others & wear a mask if passing another person is unavoidable.
However, if my risk of infection were to ⬆️-- for example, I needed to go to a series of doctor visits where (ironically) the risk of infection is high -- I'd get a booster, probably Novavax. I'm confident that covid has a much higher probability of harming me than the vaccine.
• • •
Missing some Tweet in this thread? You can try to
force a refresh
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⬇️