Sign in

ICanCME Canadian Research Network

@icancmeresearch.bsky.social
809 followers 208 following 19 posts

Interdisciplinary #Canadian Collaborative #MyalgicEncephalomyelitis Research Network (created in 2019). #MECFS #PwME #LongCovid (Account managed by Sabrina.)

PostsRepliesMedia
Reposted by ICanCME Canadian Research Network
Sabrina Poirier @sabrinapoirier.bsky.social · 25/04/2026
Hey everyone! I was invited to write about Myalgic Encephalomyelitis (ME) and our inclusion into much needed clinical trials. Please read, like and share to help us reach more people? 💙
ctontario.ca
Welcoming Myalgic Encephalomyelitis (ME) Into the Clinical Trials Space - Clinical Trials Ontario
This Talk Clinical Trials blog has been written by Sabrina Poirier, a patient advocate for Myalgic Encephalomyelitis (ME) and other complex chronic illnesses, and co-founder of the ICanCME Research Ne...
13625
Reposted by ICanCME Canadian Research Network
Physios For ME @physiosforme.bsky.social · 05/02/2026
New Survey now out: experiences of people with ME and Long Covid with hyperbaric oxygen / oxygen therapy. Please share widely. For all the info and survey link, head on over to www.physiosforme.com/o2survey
physiosforme.com
02 Chamber survey | Physiosforme
13931
ICanCME Canadian Research Network @icancmeresearch.bsky.social · 05/02/2026
We would love your support in helping us to increase our reach. Please like, share, and subscribe to the videos on YouTube and on here. 💙
074
ICanCME Canadian Research Network @icancmeresearch.bsky.social · 30/01/2026
Hey there. Have you watched yet? What are you waiting for? It’s great content, driven by #PwME! #ICanCME2025
021
ICanCME Canadian Research Network @icancmeresearch.bsky.social · 29/01/2026
Our SMART grants are open for researchers interested in studying Myalgic Encephalomyelitis! Please check out the criteria and deadlines in the application. icancme.ca/research/sma...
icancme.ca
SMART Grant Program - ICanCME
143
Reposted by ICanCME Canadian Research Network
Rehabilitation Science Research Network for COVID @uoftcovidrehab.bsky.social · 29/01/2026
@physiocan.bsky.social @longcovidphysio.bsky.social @longcovidkids.bsky.social @icancmeresearch.bsky.social @longcovidsupport.bsky.social @lcaireland.bsky.social @patientled.bsky.social @fisiocamera.bsky.social @uoftmedicine.bsky.social
011
ICanCME Canadian Research Network @icancmeresearch.bsky.social · 20/01/2026
Hey everyone. Our #ICanCME2025 #conference videos are up on YouTube. 💙 The theme of our #Canadian conference was “Nothing About Us Without Us”. Please #subscribe to our channel to help us drive engagement and watch and like our videos too. youtube.com/@icancmerese...
youtube.com
ICanCME Research Network
11710
Reposted by ICanCME Canadian Research Network
Rehabilitation Science Research Network for COVID @uoftcovidrehab.bsky.social · 20/01/2026
@physiocan.bsky.social @longcovidphysio.bsky.social @longcovidkids.bsky.social @icancmeresearch.bsky.social @longcovidsupport.bsky.social @lcaireland.bsky.social @patientled.bsky.social @fisiocamera.bsky.social @sunsopeningband.bsky.social @uoftmedicine.bsky.social @breathewellphysio.bsky.social
032
Reposted by ICanCME Canadian Research Network
Rehabilitation Science Research Network for COVID @uoftcovidrehab.bsky.social · 06/01/2026
@kellyobrien25.bsky.social @drjillcameron.bsky.social @physiocan.bsky.social @longcovidphysio.bsky.social @longcovidkids.bsky.social @icancmeresearch.bsky.social @longcovidsupport.bsky.social @lcaireland.bsky.social @uoftmedicine.bsky.social @apresj20.bsky.social @breathewellphysio.bsky.social
042
Reposted by ICanCME Canadian Research Network
Wilhelmina Jenkins @wilhelminaj.bsky.social · 07/11/2025
Thank you for the great work!
021
Reposted by ICanCME Canadian Research Network
Simon Spichak @spichaksimon.bsky.social · 07/11/2025
Day 3 of the @icancmeresearch.bsky.social conference is up as a live thread and now a brief writeup. simonspichak.beehiiv.com/p/day-3-of-t...
simonspichak.beehiiv.com
Day 3 of the ICanCME Canadian Collaborative Conference on Myalgic Encephalomyelitis
A brief summary of the presentations.
084
Reposted by ICanCME Canadian Research Network
Wilhelmina Jenkins @wilhelminaj.bsky.social · 06/11/2025
If you didn’t watch the third and last day of the #ICanCME2025 Conference for ME/CFS, here’s the live tweeting stream by @spichaksimon.bsky.social. Thanks, Simon, and thanks to @icancmeresearch.bsky.social for such a brilliant conference.
22411
ICanCME Canadian Research Network @icancmeresearch.bsky.social · 06/11/2025
#ICanCME2025
050
Reposted by ICanCME Canadian Research Network
Simon Spichak @spichaksimon.bsky.social · 06/11/2025
Thread for Day 3 of the @icancmeresearch.bsky.social conference. My attempt at simultaneously sharing on X and Bsky.
3249
Reposted by ICanCME Canadian Research Network
fibrocanada.bsky.social @fibrocanada.bsky.social · 06/11/2025
@icancmeresearch.bsky.social #ICANCME2025 Wow what an agenda for Day # 3
Menu for Day # 3 #ICANCME Conference
022
Reposted by ICanCME Canadian Research Network
Sammie McFarland @sammiemc.bsky.social · 06/11/2025
It is a privilege to represent the paediatric community, amplify young voices & share insights from families with lived experience. Looking back at @ LCK's early work I will always be grateful to our #volunteers - inc @drsuepeters.bsky.social 👉#Blog bit.ly/3LwLXCp @icancmeresearch.bsky.social
031
ICanCME Canadian Research Network @icancmeresearch.bsky.social · 06/11/2025
Are you registered? If so, please join us for our last day together! 💙
071
Reposted by ICanCME Canadian Research Network
Long Covid Kids @longcovidkids.bsky.social · 05/11/2025
We were delighted to be invited to join the @icancmeresearch.bsky.social conference for day 2 to represent CYP with overlapping illnesses - LC and ME. Sharing CYP artwork, quotes, poems from, insights on language CYP use, caregiving and support needs. #ICanCME2025 #Paediatric #Children
2187
Reposted by ICanCME Canadian Research Network
Jeffery Smith @jefferysmithme.bsky.social · 05/11/2025
@icancmeresearch.bsky.social thank you so deeply for bringing together the most dedicated and brilliant minds to share their care which we so deeply lack. Thank you Sabrina for your advocacy that I continually feel is a calling. 🩵💙🩵
042
Reposted by ICanCME Canadian Research Network
Simon Spichak @spichaksimon.bsky.social · 06/11/2025
I'll be back live tweeting/skeeting the @icancmeresearch.bsky.social conference tomorrow. Will try to get it going on BlueSky AND X simultaneously. #ICanCME
062
Reposted by ICanCME Canadian Research Network
#MEAction Network @meactnet.bsky.social · 05/11/2025
We are excited and ready for day 2 of @icancmeresearch.bsky.social! #MEAction’s Scientific Director, Jaime Seltzer @exceedhergrasp1.bsky.social, is speaking soon! #ICanCME2025 #pwME #MECFS
4319
Reposted by ICanCME Canadian Research Network
Hazie @hazie.bsky.social · 05/11/2025
Excited for day two of the excellent @icancmeresearch.bsky.social conference! Starting now! #ICanCME2025
094
Reposted by ICanCME Canadian Research Network
Nandini @nandini0306.bsky.social · 05/11/2025
This is not just a conference. It's a meeting of scientific minds who are genuinely bridging the gap between lived experience & scientific inquiry. Thank you @icancmeresearch.bsky.social for hosting such an incredible virtual conference. @chiefscican.bsky.social @thewhn.bsky.social
2106
Reposted by ICanCME Canadian Research Network
Simon Spichak @spichaksimon.bsky.social · 05/11/2025
And coverage for Day 1 of the #ICanCMEConference by the @icancmeresearch.bsky.social. Features a link to my live tweets. simonspichak.beehiiv.com/p/icancme-da...
simonspichak.beehiiv.com
Day 1 of the ICanCME Canadian Collaborative Conference on Myalgic Encephalomyelitis
A brief summary of the presentations.
42313
Reposted by ICanCME Canadian Research Network
#MEAction Network @meactnet.bsky.social · 04/11/2025
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!
0277
Reposted by ICanCME Canadian Research Network
just a cow's opinion @allmoopoints.bsky.social · 04/11/2025
Thoroughly enjoying learning about ME at the @icancmeresearch.bsky.social conference. Thank you for putting this all together.
233
Reposted by ICanCME Canadian Research Network
Simon Spichak @spichaksimon.bsky.social · 04/11/2025
Covering the @icancmeresearch.bsky.social live over on the other app. Will be posting a brief summary of the day's talks as well. x.com/SpichakSimon...
x.com
Simon Spichak on X: "A little late to the party but following the @ICanCMEResearch conference. First keynote coming on" / X
A little late to the party but following the @ICanCMEResearch conference. First keynote coming on
283
Reposted by ICanCME Canadian Research Network
ME/CFS Science @mecfsscience.org · 02/10/2025
1) The Canadian ME/CFS research network ICanCME is organizing a free and online conference from 4 to 6 November. The main presentations take place at: 1 pm - 5 pm Eastern Time 6 pm - 10 pm London Time 7 pm - 11 pm Brussels Time #ICanCME2025
13018
Reposted by ICanCME Canadian Research Network
Sabrina Poirier @sabrinapoirier.bsky.social · 03/11/2025
#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. 🤞💙
23011
Reposted by ICanCME Canadian Research Network
Maya Dusenbery @mayadusenbery.bsky.social · 04/11/2025
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...
icancme.ca
2025 ME Conference - ICanCME
4368
Reposted by ICanCME Canadian Research Network
It's ME(Jaime) @exceedhergrasp1.bsky.social · 03/11/2025
The more I think about public education, climate change, science funding, the more I realize that Republican policy is predicated on the illusion that you can harm others in your environment without harming yourself.
310329
ICanCME Canadian Research Network @icancmeresearch.bsky.social · 03/11/2025
Yay! We were locked out of this account because we forgot the password. Who can relate? 🙋🏻‍♀️ But we’re back! And ready to butterfly it up on here for the next few days of #ICanCME2025, our conference starting tomorrow.
170
Reposted by ICanCME Canadian Research Network
Sabrina Poirier @sabrinapoirier.bsky.social · 15/01/2025
Please join @putrinolab.bsky.social and I for this free webinar on Tuesday where we will be talking about increasing accessibility and collaboration in research. 👇 Thanks for hosting us and this discussion @solveme.bsky.social and @batemanhornecenter.bsky.social ! 💙
03518
Reposted by ICanCME Canadian Research Network
Lawrence (Larry) Mróz @drmroz.bsky.social · 01/12/2024
The BMJ will remunerate patient and public reviewers | The BMJ www.bmj.com/content/387/... #PatientEngagement
bmj.com
The BMJ will remunerate patient and public reviewers
The BMJ will offer £50 for reviews by patients and the public From January 2025 patients and members of the public who complete a review for The BMJ will be offered £50 or a 12 month online subscript...
0126
Reposted by ICanCME Canadian Research Network
valebodi.bsky.social @valebodi.bsky.social · 04/12/2024
Immune cells become exhausted in #MECFS. Read about the latest findings of the PNAS research paper of M. Hanson et al. here: news.cornell.edu/stories/2024...
news.cornell.edu
Immune T cells become exhausted in chronic fatigue syndrome patients | Cornell Chronicle
The study found that key CD8+ T cells showed signs of constant stimulation that lead to an exhausted state, a condition that is well-studied in cancer.
2168
Reposted by ICanCME Canadian Research Network
Isabel Jordan (she/her) @seastarbatita.bsky.social · 03/12/2024
Today, on the International Day for Persons with Disabilities, I am beyond proud that the Canadian Institutes for Health Research have released their Anti-Ableism Action Plan, entitled "From Intention to Impact". 1/3 cihr-irsc.gc.ca/e/54121.html...
cihr-irsc.gc.ca
From Intention to Impact: CIHR Anti-Ableism Action Plan - CIHR
12614
Reposted by ICanCME Canadian Research Network
Sickandtiredaus Jordan Crane @sickandtiredaus.bsky.social · 15/11/2024
You can protect yourself & your loved ones from COVID with these 6 steps: 😷 Wear a respirator mask 🏠 Stay home if sick ⏰ Test if you have symptoms 🌳 Let fresh air in or meet outdoors 💉 Stay up to date with your vaccinations 💡 Talk to your GP about COVID medicines. youtu.be/FlBfq22nxt8?...
youtu.be
Jordan’s long COVID story
YouTube video by Department of Health Victoria
927896
Reposted by ICanCME Canadian Research Network
The Sick Times @thesicktimes.org · 14/11/2024
"Many of our colleagues in the media continue to minimize the disease and the ongoing COVID-19 pandemic — but not The Sick Times." - @mileswgriffis.bsky.social It's our birthday! One year of covering the #LongCOVID crisis without denial, minimizing, or gaslighting. bit.ly/3USv2w6
bit.ly
Press release: The Sick Times announces one year of covering the Long COVID crisis - The Sick Times
“Our reporting on Long COVID remains as vital today as it did when we launched,” executive editor Miles W. Griffis said. “Many of our colleagues in the media continue to minimize the disease and the o...
013141
ICanCME Canadian Research Network @icancmeresearch.bsky.social · 16/11/2024
Hey everyone. Please sign the international list if you haven’t already. Our friends in the US need our support! Canadians benefit greatly from the advocacy and research done in the US too. 💙
0124
ICanCME Canadian Research Network @icancmeresearch.bsky.social · 14/11/2024
Anyone know how to fix an invalid handle? I’ve noticed a few of us with them.
110
Reposted by ICanCME Canadian Research Network
Sabrina Poirier @sabrinapoirier.bsky.social · 12/11/2024
I have also started one for #PatientPartnership in #research in Canada. It is still quite small still but will grow as our colleagues join us on this app. Anyone can follow us to learn more about patient partnership - how it works and where to find #resources. go.bsky.app/BPJWoAc
135121
Reposted by ICanCME Canadian Research Network
Sabrina Poirier @sabrinapoirier.bsky.social · 12/11/2024
I have started a Starter Pack for ME and Long COVID. 💙 It includes some mutuals with other packs but also some new faces too. :) Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙 go.bsky.app/6R7bqc7
139336139
Reposted by ICanCME Canadian Research Network
Sabrina Poirier @sabrinapoirier.bsky.social · 08/11/2024
Sharing this again because we need to find each other and our communities on here. 💙 We need to be connected now more than ever. 💛 If you create new starter packs, please include as many of us as possible. go.bsky.app/KnwWePQ
813261
Reposted by ICanCME Canadian Research Network
Royal Free 1955 @rfh1955.bsky.social · 19/10/2024
Three decades ago today. The Daily Herald, Utah, US. 19th October 1994. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
0144
Reposted by ICanCME Canadian Research Network
Canada Healthwatch 🍁 @canadahealthwatch.ca · 19/10/2024
Long ϹΟVΙD patients suffer high rate of autonomic disorders: research globalnews.ca/news/1081866... CanadaHealthwatch.ca 🍁 The most important health news, in one place.
Long ϹΟVΙD patients suffer high rate of autonomic disorders: research
0197
Reposted by ICanCME Canadian Research Network
Sabrina Poirier @sabrinapoirier.bsky.social · 25/10/2023
Let’s start a thread of awesome follows on here that relate to #MyalgicEncephalomyelitis #MECFS #LongCovid or #InfectionAssociatedChronicIllnesses. Because it is hard to rebuild community on a new platform…but doing it as a #PwME…nearly impossible. Let’s help each other with safe suggestions.
86026
Reposted by ICanCME Canadian Research Network
Tom Kindlon @tomkindlon.bsky.social · 04/10/2023
🧵 New: "Diagnosis and Management of #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome" Free full text: www.mayoclinicproceedings.org/article/S002... New, sympathetic guidelines. Have some status as in Mayo Clinic Proceedings & are eligible for CME #MedEd #MEcfs #CFS #PwME #MedBluesky 1/
CONCISE REVIEW FOR CLINICIANS| VOLUME 98, ISSUE 10, P1544-1551, OCTOBER 2023

Download Full Issue
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Stephanie L. Grach, MD, MS 
Jaime Seltzer, MS
Tony Y. Chon, MD
Ravindra Ganesh, MD, MBBS Open AccessDOI:https://doi.org/10.1016/j.mayocp.2023.07.032

Abstract
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its significant overlap with the post-COVID syndrome (long COVID or post-acute sequelae of COVID), with several studies estimating that half of patients with post-COVID syndrome fulfill ME/CFS criteria. Our concise review describes a generalist approach to ME/CFS, including diagnosis, evaluation, and management strategies.
14016
Reposted by ICanCME Canadian Research Network
It's ME(Jaime) @exceedhergrasp1.bsky.social · 09/10/2023
It’s in the top✨< 1%✨ most shared of all Mayo Clinic publications. It’s the ✨most shared paper✨ amongst its contemporaries at Mayo Clinic Proceedings. It’s in the ✨top 0.2%✨ most shared research products of all time. It’s been live less than a week. tinyurl.com/ywd3kmjs
1916939