iiinova — where your digital self keeps evolving

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Jen St. Denis @jenstden.bsky.social · 29/09/2026

My story about Second Sons showing up in Kamloops and how experts say this is a wake up call to law enforcement, and to political parties who have been making space for residential school denialists. thetyee.ca/News/2026/09...

thetyee.ca

Masked Group in Kamloops Sparks Alarm and Racism Fears | The Tyee

‘I don’t want these people in my neighbourhood, in my city, in my country.’

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C.H. Romatowski @chromatowski.bsky.social · 28/09/2026

It’s not a story that anyone wants to hear but in February 2018 I caught a friend’s sore throat. While he recovered fully, I just kept declining, and by June I was 99% bedbound. Eight years later, that’s where I remain. We desperately need better defenses against all respiratory viruses.

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Sabrina Poirier @sabrinapoirier.bsky.social · 11/01/2025

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

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Robert Reich @rbreich.bsky.social · 25/09/2026

DoorDash spent $1.4M trying to stop Zohran Mamdani from becoming mayor. This week's historic $131.5M enforcement action against DoorDash for underpaying NYC delivery workers shows why. Yet another reminder that the only thing that can beat organized money is organized people.

theintercept.com

DoorDash Spent $1.4 Million Trying to Stop Mamdani From Becoming Mayor. Now We Know Why.

In a wage-theft settlement, DoorDash now has to pay its workers around 100 times what it spent trying to beat Zohran Mam

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Long Covid Advocacy @longcovidadvoc.com · 26/09/2026

💬 Reminder that George Monbiot will be talking to Natasha Devon on LBC today about #ME. 📻 6-9pm Saturday 🔥 Both have been exceptional allies to #pwME so it should be a good one! Note: if listening on phone, you need the LBC app which needs setting up before. www.lbc.co.uk/radio/

lbc.co.uk

LBC Radio - Listen & Watch Live | LBC

Talk radio for the UK, letting you have your say on the big issues of the day, with breaking news and opinion.

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George Monbiot @georgemonbiot.bsky.social · 24/09/2026

Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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Natasha Devon @natashadevon.bsky.social · 24/09/2026

George will be coming on my show this weekend to discuss this very important article.

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Brendan Nyhan @brendannyhan.bsky.social · 21/09/2026

"Over the five years following a sexual assault, victims’ employment falls by 6 percentage points and annual earnings decline... These effects persist for at least a decade and correspond to a 15% decline in employment, 17% earnings loss, and 28% rise in anti-depressant use"

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Rebuilding For Every Season @rebuildingseason.bsky.social · 21/09/2026

Another quick act of kindness. Think it doesn’t matter? It definitely does. It shows you noticing their efforts and appreciating their help or support. We all do better in supportive environments so spread that kindness around. ❤️ #kindness #community #relationships

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Sabrina Poirier @sabrinapoirier.bsky.social · 16/09/2026

I love small acts of kindness and as someone living with chronic illness and disability, these types of texts are always lovely to receive. Even if I haven’t heard from someone in years, it is always lovely to reconnect. 💙

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Rebuilding For Every Season @rebuildingseason.bsky.social · 15/09/2026

Hey everyone. Doing a bit of research and connecting as I get ready to launch. Wondering: What’s the hardest conversation you’ve ever had?”

Light blue background, with sunflowers in the bottom, right hand corner. The text reads, “What’s the hardest conversation you’ve ever had? And then the account is referenced that posted this. @ rebuilding for every season.

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David Keegan @drdavidkeegan.bsky.social · 15/07/2025

If we all had the same skin colour, gender, sexual orientation, ethnicity, and abilities, there would be people who would group us by finger length, eye colour, head shape, etc., because they just want to oppress and exploit. The categories don’t matter to them, it’s all about the oppression.

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Marushka-T @marushka-t.bsky.social · 10/06/2026

Important read: PwME need inclusion in clinical trials! #ME-CFS #disability #chronicillness #medsky

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The Tennessee Holler @thetnholler.bsky.social · 28/04/2026

KIMMEL: “You know how sometimes you wake up and the First Lady demands you be fired? We’ve all been there, right? — I agree hateful, violent rhetoric is something we should reject… a great place to start to dial that back would be to talk to your husband.”

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🏴Djinnuwine👁⃤ 💙❤️💚🧿 @johnny.6witch3.com · 25/04/2026

This would also make a great info sheet for your GPs and friends/family who don’t understand what you’re up against. #ME/CFS

The onset of ME can be sudden or ME can develop gradually, often following an infection. The SARS-CoV-2 virus is the most recent example, with as many as 30% of acute COVID cases developing into Long COVID and 50% or more of those developing into ME.

Post-exertional malaise (PEM) is the cardinal symptom of ME. PEM is the delayed onset or worsening of ME symptoms, after physical or cognitive exertion, usually presenting about 24-72 hours after the exertion. PEM may take days, weeks or longer to recover from. Unfortunately, some may never recover to their previous baseline.

Core symptoms of ME also include profound and debilitating fatigue, unrefreshing sleep, cognitive impairment, orthostatic intolerance, autonomic impairment, chronic and severe ‘flu-like’ symptoms such as tender or swollen lymph nodes, fever, headache, sore throat, as well as chronic pain, gastrointestinal symptoms and sensitivity to sound and light.

ME severity can range from “mild” (which comes with a 50% reduction in function and debilitating symptoms, so it is not mild at all) to very severe (where individuals are completely bedridden, in a dark room, isolated from those they love, and left completely neglected by the healthcare system). Up to 25% of people with ME are bedbound or housebound at some point in their illness (many indefinitely), and 75% of us are unable to work.

Those of us with ME find it difficult or impossible to function as we did before ME. ME affects all aspects of our lives. That includes activities of daily living (e.g., showering, eating), relationships, parenting tasks, work, etc.

While any illness can co-exist with ME, there are many common comorbidities such as Fibromyalgia, Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, Mast Cell Activation Syndrome (MCAS), Ehlers-Danlos Syndrome (EDS) or hypermobile Ehlers Danlos Syndrome (hEDS), Small-Fibre Neuropathy, Small Intestinal Bacterial Overgrowth (SIBO), Gastroparesis and Irritable Bowel Syndrome (IBS).

Unfortunately, there continue to be misconceptions about ME – even within the scientific community. One of those misconceptions is that simply exercising will make things better. While this may be the case for many conditions and aspects of health, there is robust evidence about how this is not the case for ME. Unlike deconditioning states, ME is characterized by abnormal metabolic, autonomic, and immunologic responses to exertion that impair recovery.

Other misconceptions about ME are that it’s just ‘feeling tired’, that it only affects certain types of people, that it’s entirely different from Long COVID, that it’s psychological or psychosomatic in nature, or that there are no ways healthcare professionals can help people with ME. None of these are true.

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Wilhelmina Jenkins @wilhelminaj.bsky.social · 25/04/2026

Excellent blog post by @sabrinapoirier.bsky.social on the important considerations when including people with ME/CFS in clinical trials.

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valebodi.bsky.social @valebodi.bsky.social · 25/04/2026

A must read by #pwME @sabrinapoirier.bsky.social Welcoming Myalgic Encephalomyelitis (ME) Into the Clinical Trials Space This Talk Clinical Trials blog has been written by Sabrina Poirier, a patient advocate for Myalgic Encephalomyelitis (aka #ME/CFS) and other complex chronic illnesses, and

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...

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Marisa Kabas @marisakabas.bsky.social · 07/04/2026

If you’ve never called your congressional reps before, do it right now.

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sarah boothby @swastrosarah.bsky.social · 15/02/2026

51% Long Covid is ME. Research the Canadian Consensus Criteria for best diagnostic tools available for #ME @sabrinapoirier.bsky.social is also a great resource 🙏🏻 as is @sunsopeningband.bsky.social 🙏🏻🙏🏻 particularly on understanding how #PEM Trump's everything in symptom management.

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Acyn @acyn.bsky.social · 06/02/2026

Child at the podium: “A woo woo woo.” Mamdani: That’s how I felt when we came up with this plan. Together, we will expand the idea of what is possible in our city—and what sounds and noises we can make at a press conference.

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Hive Bakery @hivebakery.bsky.social · 30/01/2025

Shooooot! We thought for sure the rain would keep ya’ll away, but we were dead wrong! Thanks for another baller day!!! We literally have the best followers, customers, and fans out there. We’re feeling the love.

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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. 💙

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Mike Boylan-Kolchin @mbkplus.bsky.social · 30/01/2026

For all the discussion of doxxing federal agents, there’s essentially no discussion of how those agents are taking steps that attach severe punitive measures that stretch across wide swaths of the federal bureaucracy against people acting lawfully.

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Brian Stelter @brianstelter.bsky.social · 30/01/2026

This just in: "Don Lemon was taken into custody by federal agents last night in Los Angeles, where he was covering the Grammy awards," Lemon's attorney Abbe Lowell says.

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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

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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

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Chantzy @chantzy.bsky.social · 09/01/2026

Vancouverites - sharing this widely! It's about time. If other dentists want more business, it's time to adapt to meet the reality we're living in 🦷

Advertisement for Covid aware dentist in Vancouver featuring white background and graphic of cartoon tooth

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Location: Fourth Avenue Dental Clinic
1905 W 4th Ave, Vancouver
The next appointment day is January 15 2026
Call or text 604-736-2505
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More info & mailing list:
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Sammie McFarland @sammiemc.bsky.social · 21/11/2025

Fab Rehabilitation Science Research Network for COVID. fireside chat w @sunsopeningband.bsky.social on PEM /PESE = Post Exertional Neuroimmune Exhaustion. Excellent input on research planning from @nikki-s.bsky.social & @sabrinapoirier.bsky.social in the research breakout room! #patientinvolvement

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 06/11/2025

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!

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 06/11/2025

--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.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 06/11/2025

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--

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Colin Pidgeon @baldypidge.bsky.social · 06/11/2025

Thank you for sharing Sabrina

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Danielle Beckman @daniellebeckman.bsky.social · 08/10/2025

"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

Canadian Collaborative Conference on Myalgic Encephalomyelitis.
Nothing About Us Without Us

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Carrie Anna McGinn @carriemcginn.bsky.social · 05/11/2025

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. 💙

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 05/11/2025

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.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 05/11/2025

Rebecca Ryan up now to discuss GI manifestations in ME #ICanCME2025

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 05/11/2025

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

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 05/11/2025

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

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 05/11/2025

The legendary Anne Maitland is here! Nearly every interesting paper on #MCAS has her as an author. #ICanCME

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 05/11/2025

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!

Me, a white woman with long curly brown hair, wearing a pinkish button-down with a brown and black jacket

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