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kayli 🌘

@wandering

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researcher, singer, avid reader
Disabled with Long Covid 52+ months
Long Covid Knowledge Mobilization Specialist @sfu_fhs
MA in Communication @sfucmns

POSTS STORIES REELS TAGGED

Long COVID Care: Why We Need a Hybrid Approach

At the 4th Canadian Symposium for Long COVID, Kayli Jamieson discussed recommendations for making healthcare more accessible to people living with Long COVID.

Research participants preferred virtual care to be prioritized where possible, alongside in-person appointments when needed. A hybrid model could offer greater flexibility, including individual and group consultations.

Some patients still need in-person examinations, blood tests or treatments, while home-based testing may help overcome access barriers.

But sustainable funding and supportive policies are needed to make these options available.

Accessible Long COVID care means giving patients choices that reflect their individual needs.

Link to the virtual care guidebook: https://drive.google.com/file/d/103RTqDLm_5QbuUGlkjY4tevVkssCCmHc/view

#LongCOVID #VirtualCare #HealthcareAccess #LongCOVIDResearch

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This week in Long COVID and hEDS research features some recent updates I’ve been reading about. This week includes:

1. Invivyd Launches Phase 2 FLINTLOCK Trial for Long COVID
2. A Probiotic Trial Finds Improvements in Long COVID Fatigue
3. New Research Shared at the 4th Canadian Symposium on Long COVID
4. ACG Exploring the Connection Between Hypermobility and Gastroparesis
5. NIH RECOVER Long COVID Hackathon:New Insights into Immune Dysfunction

Full blog in bio! (still getting used to this new format lmk what you think or if you have any feedback!!)

Sources

1. Invivyd, Inc., & SPEAR Study Group. (2026, October 14). Invivyd and the SPEAR Study Group announce initiation of “FLINTLOCK” Phase 2 study of VYD2311, a monoclonal antibody for the potential treatment of Long COVID or post-vaccination syndrome. https://investors.invivyd.com/news-releases/news-release-details/invivyd-and-spear-study-group-announce-initiation-flintlock

2. Amoroso, C., Marinoni, B., Maragno, P., Rimondi, A., Bottaro, F., Ciafardini, C., et al. (2026). VSL#3® supplementation improves fatigue in long COVID: Results from the DELong#3 randomized placebo-controlled trial. British Journal of Biomedical Science, 83, 16993. https://doi.org/10.3389/bjbs.2026.16993

3. Long COVID Web. (2026). 4th Canadian Symposium on Long COVID. https://www.longcovidweb.ca/events/2026-symposium

4. ACG 2026: Predictors of generalized joint hypermobility in patients with gastroparesis. (2026). Gastroenterology & Endoscopy News. https://www.gastroendonews.com/PRN/Article/10-26/Generalized-Joint-Hypermobility-Predictors-in-Gastroparesis/81887

5. Institute for Systems Biology. (2026, October 16). Unraveling Long COVID: New discoveries and the promise of AI. https://heath.isbscience.org/news/our-people/heath-lab/long-covid-research-discoveries-ai/

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How can virtual care better support people with Long COVID?

At the 4th Canadian Symposium for Long COVID, Kayli Jamieson, who has lived with Long COVID for almost five years, introduced a new guidebook with national recommendations for improving virtual care.

The guidebook draws on a national survey of 621 participants, focus groups and artwork capturing patients’ experiences.

It explores barriers to accessing virtual care and offers practical policy recommendations to help make services more accessible and inclusive.

Patient voices matter. Their experiences must help shape the future of healthcare.

Link to Virtual Patient Guidebook: https://drive.google.com/file/d/103RTqDLm_5QbuUGlkjY4tevVkssCCmHc/view

#LongCOVID #VirtualCare #PatientVoice #HealthEquity

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Today is Severe M.E. Awareness day. A day that makes me feel such heavy grief, not only for what my life could have been like if I hadn’t got sick at 14, but for the millions of people who suffer around the world from this utterly devastating illness.

I had severe M.E. for several years as a teenager, and it put my entire life to a stop. I left school, and lay in bed for years, as friends went to college, and then uni, and went on to live their lives. I was completely bedbound, had a stairlift in the house, a commode next to my bed, and I was barely existing.

That’s the reality of Severe M.E.

It takes every single thing from you, and when you try and try to get better, the symptoms get worse and worse.

It is hell.

August 8th, marks the birthday of Sophia Mirza. She was the first person in the UK to have Myalgic Encephalomyelitis (ME) officially recorded as the cause of death.

Today honours those living with severe M.E. whom are living with disabling fatigue and a mariad of symptoms.
Most are housebound, bedbound, and often living in complete darkness and silence, as they cannot even tolerate light or sound.

I hope this video helps raise a little more awareness, and I want to say a huge thank you to the incredible people in this video for trusting me with your footage 💕

Please watch. Please share. This is ours - and so many others’ - reality.
These stories deserve to be seen.

💕 Thank you to @franhaddock_ & @amykatherrrine for their help with this video

[ VD : A video of Alice’s followers showing them before and after they got sick with M.E. with each persons name on screen, and some information about the illness. ] 💙

Tags of the wonderful people featured in the video part 1 (continued in comments)
Fran @franhaddock_
Amy @amykatherrrine
Armond @armond.needs.rest
Lizzie @slaywithsparkle
Elicia @its.me.elicia
Megan @mindlesslymegan
Mihaela @bloomanddot
Kayli @wandering
Lindsay @spoonfuloflindsay
Chloe
@chloeschronicles_of_illness
Emily @thatgirlwithlongcovid_
Quella @quella_the_dizzy_octopus
Fen @kutlongcovid
Katie @katiecupcakelifewithme

#MyalgicEncephalomyelitis #MECFS #ChronicIllness #InvisibleIllnessAwareness #

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Jupiter in Leo season ♌️✨
A birthday wrapped in butter yellow, good pasta, golden light, and the kind of laughter that makes you grateful for another year around the sun.
Celebrating life the Leo way - with love, friends, and a little extra sparkle ☀️
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#LeoSeason #JupiterInLeo #LeoEnergy #GoldenHourMoments #BirthdayMagic

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The Canadian Covid Society would like to hear from people who have Long Covid and caregivers of children with Long Covid! The survey is available until July 31, 2026. Find it here:
https://covidsociety.ca/priorities/long-covid/survey-2026/
Image Description: Canadian Covid Society Website with an image of a dandelion and text reading, Informing Long Covid Priorities: 2026 National Survey.

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I know it’s called stand‑up, but I’m chronically ill so I sat down… and read a poem while real, heartbreaking before‑and‑after moments from people who live this illness every day played behind me.
This part wasn’t funny - but the rest of the show was 😅 promise 😂

Thank you to the incredible people in this video for trusting me with your footage 💕

Please watch. Please share. This is ours - and so many others’ - reality.
These stories deserve to be seen.

I wrote this poem about my life with M.E.
My community shared their before & after moments to stand with me as I read it.
I’m honoured to hold their stories alongside mine.

💕 Thank you to @franhaddock_ & @amykatherrrine for their help with the background video
🎥 And to @deadplantzfilmandphotography for capturing this moment
📸 And to @thekinaton for the still image

Background music : @itsaliceella
Video edit : @itsaliceella
🎭 Venue : @komedia_brighton
🧡 Director : @veronica.von.beaverhausen

[ VD :Alice, a white woman sits on stage and reads a spoken word poem. She’s wearing a hospital gown but it’s covered in gems and has feather trim. Fancy. She’s also wearing pigeon slippers. Also fancy.
Behind her is a projector screen, where a video of Alice’s followers is being played. It shows them before and after they got sick with M.E. And has their names onscreen. ] 💙
Tags of the wonderful people featured in the video part 1 (continued in comments)
Fran @franhaddock_
Amy @amykatherrrine
Armond @armond.needs.rest
Lizzie @slaywithsparkle
Elicia @naught_3
Megan @mindlesslymegan
Mihaela @bloomanddot
Kayli @wandering
Lindsay @spoonfuloflindsay
Chloe
@ChloesChronicles_of_illness
Emily @thatgirlwithlongcovid_
Quella (labelled incorrectly on the video - this will be edited 💕) @quella_the_dizzy_octopus
Fen @kutlongcovid
Katie @katiecupcakelifewithme
Alicia @sweet_villal_panda
Pacey @paceys_place
Sienna @forevaafashionfreak
Kate @kate_shenanigans
Maya @mayabee24
Sarah @imsarahsalt
Hauwa @ibreathemagic_
Josh @Joshlowell11
Nads @nadsfads
Markéta @marketadoesntexist
Dali @dali.no.mates
Amelia ameliasolo
Rachel @craftcrochetcritters

#MyalgicEncephalomyelitis #MECFS #ChronicIllness

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After a life-changing infection with COVID-19 one semester into her graduate degree, from which she developed Long COVID, Kayli Jamieson dedicated her research to Long COVID studies and community advocacy to raise awareness for this ongoing pandemic.

Now graduating this month, Kayli will be continuing her Long COVID research here at SFU!

Read her story via the link in our bio!

#mysfugrad

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12:00PM EST | 11:00AM CDT | 9:00AM PST on 05/25 it's Jaydo Covid aka DJ Jaydo @dj.jaydo 🎉 (follow him!)

DJ Jaydo spins mostly house and deep house tracks at Covid-safer events in the DMV, Chicago, and beyond. He is a founding member of DMV Masked Raves and is a clean air and public health advocate under the name Jaydo Covid.
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MONDAY, MAY 25, 2026
Tune into @MaskWeekMarathon
11:00AM - 11:00PM EST | 10:00AM - 10:00PM CDT | 8:00AM - 8:00PM PST

TO WATCH/LISTEN: see the access slide! Just go to www.MaskWeek.com, find the DJ spinning at the time you are tuning in, & click their Twitch link. Easy!

For full details or for info about World Mask Week, visit www.MaskWeek.com

TELL SOMEBODY 🎉 JOY & SOLIDARITY TO ALL 🌎 HAPPY WORLD MASK WEEK 😷

IDs incoming DM to join the Volunteer ID Team
#WorldMaskWeek #MaskWeek2026 #DJJaydo #JaydoCOVID #DJ

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January - February 🎀
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#vanvouver #january #february #books #matcha

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Long COVID is causing serious long-term health risks, including heart, neurological, and immune complications, even after mild infections.

Beyond the physical impact, many face isolation, disbelief, and lack of adequate medical support.

We must listen, take it seriously, and do more to protect and support those affected.

#longcovid #longcovidtheanswers @cancovidsoc

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Catching up with Long COVID Research Fellow at SFU, Kayli Jamieson, on Long COVID awareness day in Vancouver, Canada.
#longcovid #longcovidtheanswers @wandering

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