Sabrina Poirier
@sabrinapoirier.bsky.social
#CommunityEngagement Expert. Life sidelined by #MECFS #MCAS #POTS #Fibro #Gastroparesis +
#MECFS & #LongCovid #ResearchPartner & #Advocate • Chair of #MedicalEducation Group • #PwME #Disability
(Unceded) #Canada
https://linktr.ee/sabrinapoiriercanada
#MECFS & #LongCovid #ResearchPartner & #Advocate • Chair of #MedicalEducation Group • #PwME #Disability
(Unceded) #Canada
https://linktr.ee/sabrinapoiriercanada
Pinned
Hey everyone. I have updated my starter pack of community leaders, advocates, researchers, clinicians, patients and carers from our #LongCOVID and #MyalgicEncephalomyelitis community.
Please check it out and feel free to share.
go.bsky.app/6R7bqc7
Please check it out and feel free to share.
go.bsky.app/6R7bqc7
Reposted by Sabrina Poirier
@carriemcginn.bsky.social @sabrinapoirier.bsky.social @icancmeresearch.bsky.social
On Jan 15th, 2026.
ow.ly/Fnhy50XiObM
On Jan 15th, 2026.
ow.ly/Fnhy50XiObM
Welcome! You are invited to join a webinar: From Mystery to Measurable: The Science Behind the New ME/CFS Blood Test. After registering, you will receive a confirmation email about joining the webinar...
Scientists have developed a simple, accurate blood test that can potentially identify Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) — a long-term, debilitating condition that affects m...
ow.ly
November 7, 2025 at 6:57 AM
Reposted by Sabrina Poirier
I'm grateful to have been able to present preliminary findings at #ICanCME2025, and can't wait until it's a paper to show you.
Thanks to organizers and all who presented & will present today! Your work means a lot to us broadly, and a lot to me in particular. ❤️
We appreciate you!
Thanks to organizers and all who presented & will present today! Your work means a lot to us broadly, and a lot to me in particular. ❤️
We appreciate you!
November 6, 2025 at 4:32 PM
I'm grateful to have been able to present preliminary findings at #ICanCME2025, and can't wait until it's a paper to show you.
Thanks to organizers and all who presented & will present today! Your work means a lot to us broadly, and a lot to me in particular. ❤️
We appreciate you!
Thanks to organizers and all who presented & will present today! Your work means a lot to us broadly, and a lot to me in particular. ❤️
We appreciate you!
Reposted by Sabrina Poirier
--but pay a great deal for the fallout. And that a lot of people attending conferences may think, "People with lived experience seem bright, alert and focused. They look neat and tidy. How bad can it be?"
I don't feel like I'm fully crashed. I managed with lots of extra meds and got good rest.
I don't feel like I'm fully crashed. I managed with lots of extra meds and got good rest.
November 6, 2025 at 4:32 PM
--but pay a great deal for the fallout. And that a lot of people attending conferences may think, "People with lived experience seem bright, alert and focused. They look neat and tidy. How bad can it be?"
I don't feel like I'm fully crashed. I managed with lots of extra meds and got good rest.
I don't feel like I'm fully crashed. I managed with lots of extra meds and got good rest.
Reposted by Sabrina Poirier
Considering how flattened I am, I don't think I can cover the third day.
One thing I appreciated about the #ICanCME2025 conference opener was that the conference organizers talked about this: how people like me would look 'together' and 'on' while the conference was underway--
One thing I appreciated about the #ICanCME2025 conference opener was that the conference organizers talked about this: how people like me would look 'together' and 'on' while the conference was underway--
November 6, 2025 at 4:32 PM
Considering how flattened I am, I don't think I can cover the third day.
One thing I appreciated about the #ICanCME2025 conference opener was that the conference organizers talked about this: how people like me would look 'together' and 'on' while the conference was underway--
One thing I appreciated about the #ICanCME2025 conference opener was that the conference organizers talked about this: how people like me would look 'together' and 'on' while the conference was underway--
Reposted by Sabrina Poirier
Thank you for sharing Sabrina
November 6, 2025 at 7:28 PM
Thank you for sharing Sabrina
Reposted by Sabrina Poirier
"Nothing About Us Without Us".
I've been thinking about the title of this meeting and asking myself, why don't we hold more scientific meetings like this? The public brings the questions for the scientists, and we show them what we are doing to address it. #ME #MECFS
#AcademicSky
I've been thinking about the title of this meeting and asking myself, why don't we hold more scientific meetings like this? The public brings the questions for the scientists, and we show them what we are doing to address it. #ME #MECFS
#AcademicSky
October 8, 2025 at 9:39 PM
"Nothing About Us Without Us".
I've been thinking about the title of this meeting and asking myself, why don't we hold more scientific meetings like this? The public brings the questions for the scientists, and we show them what we are doing to address it. #ME #MECFS
#AcademicSky
I've been thinking about the title of this meeting and asking myself, why don't we hold more scientific meetings like this? The public brings the questions for the scientists, and we show them what we are doing to address it. #ME #MECFS
#AcademicSky
Reposted by Sabrina Poirier
Thank you so much @spichaksimon.bsky.social for your live tweeting the #ICanCME2025 conference today. 🙏
The energy and time you give to support our #MECFS community is so appreciated. 💙
The energy and time you give to support our #MECFS community is so appreciated. 💙
November 5, 2025 at 4:57 AM
Thank you so much @spichaksimon.bsky.social for your live tweeting the #ICanCME2025 conference today. 🙏
The energy and time you give to support our #MECFS community is so appreciated. 💙
The energy and time you give to support our #MECFS community is so appreciated. 💙
Reposted by Sabrina Poirier
Love that we are getting some poop visualizations. /gen
One of those things that even some doctors are squeamish about, but it's an important diagnostic!
Rebecca Ryan is discussing how #POTS affects digestive function re: hypovolemia, & #MCAS can affect what/whether ppl eat on a regular schedule.
One of those things that even some doctors are squeamish about, but it's an important diagnostic!
Rebecca Ryan is discussing how #POTS affects digestive function re: hypovolemia, & #MCAS can affect what/whether ppl eat on a regular schedule.
November 5, 2025 at 9:22 PM
Reposted by Sabrina Poirier
Rebecca Ryan up now to discuss GI manifestations in ME #ICanCME2025
November 5, 2025 at 9:10 PM
Rebecca Ryan up now to discuss GI manifestations in ME #ICanCME2025
Reposted by Sabrina Poirier
Very cool imagery in Sammie's presentation. A collage of dismissive statements teens have heard when they say they're sick, including " you would feel better if you didn't spend all day in bed", "you are looking really well", "it could be a lot worse" and "kids don't get Long COVID"
#ICanCME2025
#ICanCME2025
November 5, 2025 at 9:09 PM
Very cool imagery in Sammie's presentation. A collage of dismissive statements teens have heard when they say they're sick, including " you would feel better if you didn't spend all day in bed", "you are looking really well", "it could be a lot worse" and "kids don't get Long COVID"
#ICanCME2025
#ICanCME2025
Reposted by Sabrina Poirier
Love the way Maitland frames mast cells as helpers who have lost their way 😂
And that there are a lot of potentially underlying causes and that it's best to look for autonomic and connective tissue issues for first mover
#ICanCME2025
And that there are a lot of potentially underlying causes and that it's best to look for autonomic and connective tissue issues for first mover
#ICanCME2025
November 5, 2025 at 8:51 PM
Love the way Maitland frames mast cells as helpers who have lost their way 😂
And that there are a lot of potentially underlying causes and that it's best to look for autonomic and connective tissue issues for first mover
#ICanCME2025
And that there are a lot of potentially underlying causes and that it's best to look for autonomic and connective tissue issues for first mover
#ICanCME2025
Reposted by Sabrina Poirier
Just gave the talk!! (Whew.) Sabrina said "please go slowly for the interpreter" and that added five minutes, just goes to show how quickly I usually talk!
November 5, 2025 at 7:00 PM
Just gave the talk!! (Whew.) Sabrina said "please go slowly for the interpreter" and that added five minutes, just goes to show how quickly I usually talk!
Reposted by Sabrina Poirier
Getting ready for Day 2 at the #ICanCME2025 conference!
I'll be delivering a talk about neurodiversity in #pwME and IACCs in general. Hope to see you there!
I'll be delivering a talk about neurodiversity in #pwME and IACCs in general. Hope to see you there!
November 5, 2025 at 5:25 PM
Getting ready for Day 2 at the #ICanCME2025 conference!
I'll be delivering a talk about neurodiversity in #pwME and IACCs in general. Hope to see you there!
I'll be delivering a talk about neurodiversity in #pwME and IACCs in general. Hope to see you there!
Reposted by Sabrina Poirier
Are you registered?
If so, please join us for our last day together! 💙
If so, please join us for our last day together! 💙
Today is the last day of the #ICanCME2025 Conference.
We will be talking research design today!
Common mistakes, gaps in knowledge, tools we need to create, opportunities for increased diversity and inclusion, hoe to increase accessibility in research, why patient partnership matters, and more!
We will be talking research design today!
Common mistakes, gaps in knowledge, tools we need to create, opportunities for increased diversity and inclusion, hoe to increase accessibility in research, why patient partnership matters, and more!
November 6, 2025 at 1:06 PM
Are you registered?
If so, please join us for our last day together! 💙
If so, please join us for our last day together! 💙
Today is the last day of the #ICanCME2025 Conference.
We will be talking research design today!
Common mistakes, gaps in knowledge, tools we need to create, opportunities for increased diversity and inclusion, hoe to increase accessibility in research, why patient partnership matters, and more!
We will be talking research design today!
Common mistakes, gaps in knowledge, tools we need to create, opportunities for increased diversity and inclusion, hoe to increase accessibility in research, why patient partnership matters, and more!
November 6, 2025 at 1:04 PM
Today is the last day of the #ICanCME2025 Conference.
We will be talking research design today!
Common mistakes, gaps in knowledge, tools we need to create, opportunities for increased diversity and inclusion, hoe to increase accessibility in research, why patient partnership matters, and more!
We will be talking research design today!
Common mistakes, gaps in knowledge, tools we need to create, opportunities for increased diversity and inclusion, hoe to increase accessibility in research, why patient partnership matters, and more!
Reposted by Sabrina Poirier
Joining day 1 of the ICanCME Canadian Collaborative Conference on Myalgic Encephalomyelitis (ME).
Huge shout-out for the respect for lived experience! Wonderful start!
#ICanCME2025
#NothingAboutUsWithoutUs
@icancmeresearch.bsky.social, applause to planning team!
Huge shout-out for the respect for lived experience! Wonderful start!
#ICanCME2025
#NothingAboutUsWithoutUs
@icancmeresearch.bsky.social, applause to planning team!
November 4, 2025 at 6:18 PM
Joining day 1 of the ICanCME Canadian Collaborative Conference on Myalgic Encephalomyelitis (ME).
Huge shout-out for the respect for lived experience! Wonderful start!
#ICanCME2025
#NothingAboutUsWithoutUs
@icancmeresearch.bsky.social, applause to planning team!
Huge shout-out for the respect for lived experience! Wonderful start!
#ICanCME2025
#NothingAboutUsWithoutUs
@icancmeresearch.bsky.social, applause to planning team!
Reposted by Sabrina Poirier
Yeah, I had to stop, folks! It was really good, though, and what I liked most about it was the wide-ranging series of topics so far. It hasn't felt like any other research conference I've attended.
#ICanCME2025 has a combination qual/quant vibe that's really appealing.
#ICanCME2025 has a combination qual/quant vibe that's really appealing.
November 4, 2025 at 8:40 PM
Yeah, I had to stop, folks! It was really good, though, and what I liked most about it was the wide-ranging series of topics so far. It hasn't felt like any other research conference I've attended.
#ICanCME2025 has a combination qual/quant vibe that's really appealing.
#ICanCME2025 has a combination qual/quant vibe that's really appealing.
Reposted by Sabrina Poirier
At the #ICanCME2025 conference today!
Sabrina Poirier & Maeghan Taverner's intros blew me away.
~Acknowledging labor from people with lived experience
~Setting out expectations
~Moment of silence for those we've lost
This is what a conference designed by people with lived experience looks like 🧪
Sabrina Poirier & Maeghan Taverner's intros blew me away.
~Acknowledging labor from people with lived experience
~Setting out expectations
~Moment of silence for those we've lost
This is what a conference designed by people with lived experience looks like 🧪
November 4, 2025 at 6:23 PM
At the #ICanCME2025 conference today!
Sabrina Poirier & Maeghan Taverner's intros blew me away.
~Acknowledging labor from people with lived experience
~Setting out expectations
~Moment of silence for those we've lost
This is what a conference designed by people with lived experience looks like 🧪
Sabrina Poirier & Maeghan Taverner's intros blew me away.
~Acknowledging labor from people with lived experience
~Setting out expectations
~Moment of silence for those we've lost
This is what a conference designed by people with lived experience looks like 🧪
Reposted by Sabrina Poirier
Love seeing our Still Sick Still Fighting showing up at the @icancmeresearch.bsky.social conference!
Thank you, @sabrinapoirier.bsky.social!
#ICanCME2025 #StillSickStillFighting
#MyalgicEncephalomyelitis #MECFS #LongCovid
Find tees here: www.bonfire.com/store/meacti...
Thank you, @sabrinapoirier.bsky.social!
#ICanCME2025 #StillSickStillFighting
#MyalgicEncephalomyelitis #MECFS #LongCovid
Find tees here: www.bonfire.com/store/meacti...
November 4, 2025 at 7:16 PM
Love seeing our Still Sick Still Fighting showing up at the @icancmeresearch.bsky.social conference!
Thank you, @sabrinapoirier.bsky.social!
#ICanCME2025 #StillSickStillFighting
#MyalgicEncephalomyelitis #MECFS #LongCovid
Find tees here: www.bonfire.com/store/meacti...
Thank you, @sabrinapoirier.bsky.social!
#ICanCME2025 #StillSickStillFighting
#MyalgicEncephalomyelitis #MECFS #LongCovid
Find tees here: www.bonfire.com/store/meacti...
Reposted by Sabrina Poirier
Honored to be speaking about ME, gender bias in medicine, and women's "unexplained" chronic illness at the #ICanCME2025 conference this afternoon. Thanks @icancmeresearch.bsky.social! icancme.ca/research/202...
2025 ME Conference - ICanCME
icancme.ca
November 4, 2025 at 4:44 PM
Honored to be speaking about ME, gender bias in medicine, and women's "unexplained" chronic illness at the #ICanCME2025 conference this afternoon. Thanks @icancmeresearch.bsky.social! icancme.ca/research/202...
#ICanCME2025 is happening this week!
This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far.
And please be patient with us this week if we run into any issues. 🤞💙
This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far.
And please be patient with us this week if we run into any issues. 🤞💙
November 3, 2025 at 3:51 PM
#ICanCME2025 is happening this week!
This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far.
And please be patient with us this week if we run into any issues. 🤞💙
This was an initiative driven by people with ME and their loved ones with the support of many along the way! We’re so thankful for everyone’s support so far.
And please be patient with us this week if we run into any issues. 🤞💙
Reposted by Sabrina Poirier
Case report by @sunsopeningband.bsky.social et al. @workwellfoundation.bsky.social @wearlumia.bsky.social
This case report explored whether reduced blood flow to the head contributes to postexertional malaise (PEM) in myalgic encephalomyelitis (ME). Using a new in-ear device, researchers measured
This case report explored whether reduced blood flow to the head contributes to postexertional malaise (PEM) in myalgic encephalomyelitis (ME). Using a new in-ear device, researchers measured
journals.lww.com
October 30, 2025 at 12:51 PM
Case report by @sunsopeningband.bsky.social et al. @workwellfoundation.bsky.social @wearlumia.bsky.social
This case report explored whether reduced blood flow to the head contributes to postexertional malaise (PEM) in myalgic encephalomyelitis (ME). Using a new in-ear device, researchers measured
This case report explored whether reduced blood flow to the head contributes to postexertional malaise (PEM) in myalgic encephalomyelitis (ME). Using a new in-ear device, researchers measured
Please check your spam or junk folders for an email from ICanCME if you haven’t received your link yet for part 2 of the conference registration. :)
Also, we had some missing emails and some that were rejected for being written incorrectly (missing the @ sign for example).
Also, we had some missing emails and some that were rejected for being written incorrectly (missing the @ sign for example).
October 30, 2025 at 11:34 AM
Please check your spam or junk folders for an email from ICanCME if you haven’t received your link yet for part 2 of the conference registration. :)
Also, we had some missing emails and some that were rejected for being written incorrectly (missing the @ sign for example).
Also, we had some missing emails and some that were rejected for being written incorrectly (missing the @ sign for example).
Reposted by Sabrina Poirier
Thanks for sharing this Solve.
We appreciate it.
We appreciate it.
Register today for the @icancmeresearch.bsky.social online conference Nov. 4-6. The event was designed by people w/ #MECFS and the theme is “Nothing About Us Without Us.”
icancme.ca/research/202...
icancme.ca/research/202...
2025 ME Conference - ICanCME
icancme.ca
October 13, 2025 at 4:40 PM
Thanks for sharing this Solve.
We appreciate it.
We appreciate it.