Small but mighty 💪🏽 #earlyeducator, visual artist, health enthusiast advocating for #LongCovid awareness. No longer #essentialworkers, speak truth to power!🦋
Vermont USA
Joined April 2023
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Ylan Roy retweeted
The first review of 5Pro.
My AirFanta 5Pro is here! It was a delight to order, arrived in 2 days (!), took about a minute to assemble (oh, how *easily* and satisfyingly it clicks together!) and runs like a dream.
Thanks @Engineer_Wong !
ALT Fully assembled air purifier on a grey table with dog in background
ALT Digital monitor showing fan speed and PM2.5 counter
Ylan Roy retweeted
This is a no-brainer. I’d upgrade all of my devices at home & work if I could afford to do so. I purchased one to replace my CR Box in the garage. I’ll be back for more.
AirFanta 5Pro Officially Launched: Two Years in the Making, Fully Evolved
We are excited to announce the launch of our new air purifier, the AirFanta 5Pro, following two years of design and manufacturing.
The 5Pro has been redesigned based on the structure of the 3Pro, with improvements across the board: it looks better and is easier to install.
In terms of performance, the CADR remains outstanding. Measured in an AHAM-certified laboratory, the results are as follows:
PM2.5: 393 CFM
SMOKE: 379 CFM
DUST: 408 CFM
Pollen: >450 CFM
We are also applying for AHAM and ENERGY STAR certification.
In addition, the 5Pro now features a PM2.5 sensor and display, as well as an Auto mode. When disassembled, it can still fit into a 20-inch suitcase, making it easy to carry and store.
For purchase links and more information, please click the link below:
air-fanta.com/products/airfa…
It is currently available for purchase in the United States, Canada, Europe, the United Kingdom, Australia, and countries across East Asia and Southeast Asia.
Ylan Roy retweeted
Today starts a tough return to work after family loss & grief. So #LongCOVID community: I'm preparing to speak with researchers tomorrow, what specific examples of trial/study design problems or outcomes that patient input could have improved do you think I should share?
Ylan Roy retweeted
ME LC peeps - I’m having a reaction to iodine contrast following abdomen scan. It doesn’t feel like it’s an allergic reaction but a kind of autonomic shock. I’m hyper reactive to meds since post-covid micro vascular damage, but tolerated iodine contrast fine in past. Any thoughts tips? #pwME
Ylan Roy retweeted
If you are in New York City and are too sick to cook for yourself, there is an organization interested in delivering free prepared meals to more Long COVID and ME patients!
God's Love We Deliver has been quite an institution in New York - they started out delivering food during the AIDS crisis and have grown to a $30 million/year non-profit. But when I went to apply, I quickly found out that though they serve pretty much all of the "traditional" illnesses - Parkinsons, ALS, etc. - they don't support complex chronic conditions!
So I've been doing some personal advocacy. Over the last few months, I've emailed, and called, and emailed, and called, speaking to several different people and making the case for how debilitating Long COVID and ME are. Finally, I was able to convince them to accept my application.
Once I was connected to the nutritionist assigned to my case, I had a long call with her and she was blown away that someone could be bedbound from Long COVID - she had never heard of such a thing! So I convinced her that I should help get the word out in our community and she agreed.
GLWD delivers frozen meals weekly: five lunches and five dinners, and they work with you to customize nutrition based on your specific needs.
I have finally been well enough the last two weeks where I can get out of bed for a few minutes to roll over to the microwave, and it is such a joy to eat warm food again.
If you or anyone you know is in NYC and could use meal delivery, I'm happy to walk you through how to apply and answer any questions.
Ylan Roy retweeted
Have you or anyone you know tried Ensitrelvir to prevent infection after a COVID exposure?
I’m wondering how accessible it is, insurance coverage, and the price
Ylan Roy retweeted
🚨Important: @ngklimas sipavibart trial needs to enroll 5 more Long COVID participants by of this month! Details: 👇
reddit.com/r/covidlonghauler…
Ylan Roy retweeted
"Where does a child spend most of their waking hours? In school [...]
And indoor air can be up to five times more polluted than outdoor air. It makes no sense for governments to be fixated on outdoor air as the problem..."
Barry Gardiner MP speaking at the UN 🧵
Ylan Roy retweeted
When you want to be a “better” anything, it requires daily work. For me, being a better Dad is being a better human. Help me help others in my mission and this competition 🙏
#LongCovidSuperDad✊
🗳️ 👇 💯
yoursuperdad.org/adam-van-ba…
Ylan Roy retweeted
Yes! You should be able to livestream from this link: webtv.un.org/en/asset/k1h/k1…
It'll be an early morning for us CA folks.
Ylan Roy retweeted
‘Outdated’ health policies surrounding Covid still pose a danger today, says U of C researcher ctvnews.ca/calgary/article/o…
Healthy Indoor Air in Schools: Every Breath Shapes Learning- UN event- I was just able to register for virtual attendance for free. #CleanAir
#CovidIsAirborne
If you are near NYC and want to attend in-person, you can register here: airclub.org/unga-2026
You must register by the end of TODAY (Thursday) to be able to attend the UN event. (UN rules - it takes time to vet registrants)
2/
Ylan Roy retweeted
BioVie announces successful Phase II Clinical Trial Results for Bezisterim for Long COVID!
Our team just tuned into their webinar - the replay will be posted on the @BioVie_Pharma site (link below).
Today, the @BioVie_Pharma team, along with leading Long COVID researcher @MichaelPelusoMD and patient advocate Ezra Spier, shared some really helpful insights. Recap below! 👇
Bezisterim is an anti-inflammatory drug which crosses the blood-brain barrier. It works by inhibiting two major inflammatory pathways, ERK and Nf-kB.
The SARS-CoV-2 spike protein is known to trigger inflammation via these pathways. So, the thought behind this trial is that if the virus or fragments are persisting in Long COVID, bezisterim might be able to block its downstream inflammatory effects - although it would not be directly targeting the virus itself, like the Paxlovid or monoclonal antibody trials. 🦠
Bezisterim met all of its endpoints of reducing fatigue, post-exertional malaise, and cognitive dysfunction with statistical significance, amongst the subgroups of patients who scored high on these symptoms at the start of the trial.
In other words, patients had to have a significant symptom burden at the beginning of the trial, in order to demonstrate significant improvement.
This is an important lesson for researchers to keep in mind in future trials: patient selection is important.
A treatment that could be effective for patients with specific symptoms may not show statistical significance when trialed across a large, heterogenous group of patients that don't necessarily score high on the specific symptoms being targted by the drug.
On the call, BioVie discussed their plans for a Phase III clincical trial.
They're planning to run a decentralized arm, so severe patients who aren't able to travel to a trial site can receive the drug at home, as well as an open-label arm, so that patients who received the placebo can eventually receive the drug as well.
It's super exciting to see a drug finally demonstrate such a strong treatment for Long COVID!
As Dr. Peluso said, ""These results are shocking to me, in the best possible way."
We're excited to see where the Phase III trial goes!
We do believe there is so much reason for LC patients to have hope, and are grateful to everyone working to solve this problem!
We're excited to see where the Phase III trial goes! We do believe there is so much reason for LC patients to have hope, and are grateful to everyone working to solve this crisis! 🙏✨
biospace.com/press-releases/…
Took a month, but I was able to get this prescribed to keep it home- in case of household Covid infection. Medicare part D insurance paid most and found a hospital pharmacy financial aid co-pay program to pay the rest. #Xocova
COVID PSA: We now have PEP.
Ensitrelvir (Xocova) can be taken after a known COVID exposure to reduce the risk of developing COVID.
Preventing the infection in the first place also means preventing its potential downstream consequences, including Long COVID.
#LongCOVID #COVID19
Anyone else starting Mestinon? #LongCOVID #ME
🔴Could Mestinon help a specific subgroup of Long COVID and ME/CFS?
We’ve already looked at why some people with Long COVID or ME/CFS might respond to metformin, while others may respond better to low-dose naltrexone.
There is another very different drug that I think is worth understanding: pyridostigmine, better known as Mestinon.
The interesting question is probably not whether Mestinon “works for Long COVID” or “works for ME/CFS” as a whole. It is whether there is a subgroup in whom autonomic transmission, venous return, preload or related neurovascular abnormalities represent an important physiological bottleneck.
To understand why that could matter, it helps to start with what Mestinon was originally developed to do.
1/26
Ylan Roy retweeted
Hi! This will probably get buried because my account is new but my new handle is @internetuserer . I'd appreciate if someone could share my account to get me reconnected to folks again.
Ylan Roy retweeted
The COVID-19 Longhauler Advocacy Project's founder, Karyn Bishof, spoke with @thesicktimes about the Department of Defense's funding of an $8 million grant for Long COVID #clinicaltrials.
Bishof applauded the long-awaited grant award noting that “this investment cannot stand alone." C19LAP has called for at least $8 billion in #LongCOVIDResearch funding annually. Bishof stated, “PROBE-PASC should represent part of a much larger national research effort — not the limit of our investment.”
The COVID-19 Longhauler Advocacy Project will continue advocating for the programs, education, and solutions millions living with #LongCOVID desperately need.
Read the full article here:
thesicktimes.org/2026/09/01/…
ALT An infographic from the COVID-19 Longhauler Advocacy Project (C19LAP). The top half announces a $8 million Department of Defense grant for Long COVID clinical trials and mentions an interview with The Sick Times. The bottom half features two quotes from founder Karyn Bishof noting that this investment cannot stand alone and calling for $8 billion a year across agencies, stating PROBE-PASC must be a baseline, not the limit. The top half of the infographic is white and the bottom is teal. C19LAP's logo sits on the right side where the white and teal meet. Text is black.
Ylan Roy retweeted
“Long COVID is associated with increased cardiovascular, renal, and pulmonary risks across adult age groups, with relatively larger risks observed in younger adults.”
ahajournals.org/doi/10.1161/…
Ylan Roy retweeted
Today @thesicktimes: Lots of details from me on the Department of Defense grant funding a new Long COVID clinical trials program. The story includes context on past DOD medical research funding, comments & slides from Michael Peluso (PI), and more:
thesicktimes.org/2026/09/01/…
Ylan Roy retweeted
We are looking for at least 52 submissions and we are at 15! Please consider taking 2-3 minutes to #participatetoeducate!
Patient experiences drive education—and education drives change.
We are seeking impactful public-facing quotes from people living w/ #LongCOVID (from a #COVID-19 infection) for an educational series. International submissions welcome.
Participate here: forms.gle/iUNS4g3peHnN9ane6
