iiinova — where your digital self keeps evolving

Reposted by KP Banks

Chloé de Canson @chloedecanson.bsky.social · 05/10/2026

Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack.

Screenshot of the header of a published paper:

Studies in History and Philosophy of Science

Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis

Chloé de Canson

Department of of Theoretical Philosophy, University of Groningen, Oude Boteringestraat 52, Groningen, 9712 GL, the Netherlands

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KP Banks @kpbanks.bsky.social · 21/09/2026

That’s so exciting! Fingers crossed!

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C.H. Romatowski @chromatowski.bsky.social · 06/08/2026

Folks who count on the PMC map (a lot of people I know) should read this.

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C.H. Romatowski @chromatowski.bsky.social · 09/08/2026

One thing anyone can do in solidarity with people with Severe ME is to help bring us into the public consciousness by checking out and sharing the Sundance-premiered, Oscar-shortlisted doc UNREST, free on YT. A love story and rare glimpse at people so ill with ME that you’ll never see us in public.

youtu.be

UNREST Feature Documentary (With Captions and Multilingual Subtitles)

YouTube video by Unrest Film

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KP Banks @kpbanks.bsky.social · 28/04/2026

Exciting and important work! Congrats to @exceedhergrasp1.bsky.social and colleagues

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C.H. Romatowski @chromatowski.bsky.social · 02/04/2026

Thrilled we have this new Comment out in @thelancetinfdis.bsky.social, arguing that to give Long COVID scientists more incentive to incorporate patient expertise throughout the research process, LC papers should all be subject to pre-publication review by patients. Free to read w/registration!

thelancet.com

The case for routine patient review in long COVID research

Long COVID is an infection-associated chronic condition that occurs after SARS-CoV-2 infection and can lead to sometimes severe disability.1–3 In early 2024, long COVID had already affected 400 millio...

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Reposted by KP Banks

Chloé de Canson @chloedecanson.bsky.social · 01/04/2026

Many Long COVID scientists fail to meaningfully draw on the insights of patient-researchers. In our Comment for @thelancetinfdis.bsky.social, we propose a solution: make all Long COVID papers undergo pre-publication patient review. 1/

THE LANCET
Infectious Diseases
COMMENT • Online first, March 31, 2026
The case for routine patient review in long COVID research
Letícia Soares . CH Romatowski . Gina Assaf . Chloé de Canson

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KP Banks @kpbanks.bsky.social · 31/03/2026

Thanks for mentioning treating the drivers rather than symptoms. Great way to conceptualize giving care.

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KP Banks @kpbanks.bsky.social · 06/03/2026

You wait for the breaths to come. I counted them. Mine was intermittent, typically when other symptoms flared. Speech therapy and the SGB helped me move past it.

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KP Banks @kpbanks.bsky.social · 06/03/2026

I had this symptom during early days of LC. It is terrifying.

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KP Banks @kpbanks.bsky.social · 15/01/2026

Random take: leggings should be considered reimbursable medical expenses for people with dysautonomia/POTS. See also compression socks.

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Reposted by KP Banks

Julia MV @julialmv.bsky.social · 19/12/2025

Out today - our recommendations for Long COVID clinical trial design, focusing on currently available outcome measures: www.sciencedirect.com/science/arti... We make 5 overarching recommendations for Long COVID clinical trials: 1) thorough characterisation of baseline disease 1/3

sciencedirect.com

Long COVID has created a worldwide public health crisis and has no approved treatments or validated biomarkers. We summarize the current challenges an…

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KP Banks @kpbanks.bsky.social · 20/11/2025

Yes! I have been so grateful to learn from the clinicians here. The feedback loop between researchers and clinicians is woefully lacking.

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KP Banks @kpbanks.bsky.social · 19/11/2025

And if you're here in Boston, please say hi! I'm the person with purple hair wearing my mask of choice, the Dräger :)

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KP Banks @kpbanks.bsky.social · 19/11/2025

I am speaking tomorrow at the 3rd Long COVID International Conference about models of care! What do you want researchers and clinicians to learn about models of care?

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KP Banks @kpbanks.bsky.social · 21/10/2025

Super easy prevention: wear a mask. “Preventative action is urgently needed, otherwise there’s a risk that we set our young people onto a path of ill health through the rest of their lives. This would be a sad loss of potential for the individual and the economy.”

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KP Banks @kpbanks.bsky.social · 21/10/2025

We have the evidence of the protective effects for neurodegenerative disease. It’s time to lower the age restrictions.

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KP Banks @kpbanks.bsky.social · 21/10/2025

Just the concrete tips of David Keegan from University of Calgary on how to use “familiar” data in clinical practice could be game changing for patients. #lcwsymposium

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KP Banks @kpbanks.bsky.social · 21/10/2025

I truly wish I had the spoons for posting all the amazing content today about health systems and service delivery for LC at #LCWSymposium

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C.H. Romatowski @chromatowski.bsky.social · 21/10/2025

Another day, another round of “I can’t believe this needs saying”: Observing a condition in clinic is *not* lived experience of that condition, and trying to claim it as such is an outrageous appropriation. Clinicians have no shortage of authority. Do not grab for the crumbs left to patients.

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KP Banks @kpbanks.bsky.social · 21/10/2025

Dr. Yonkers: “I do think this [testing for POTS, PEM, LC] can be done in the primary care office…keep it close to home.” #lcwsymposium #longcovidkids

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KP Banks @kpbanks.bsky.social · 21/10/2025

Part of this includes ruling out other symptoms, as well as assessing for PEM and testing for POTS, other autonomic issues. #lcwsymposium #longcovidkids

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KP Banks @kpbanks.bsky.social · 21/10/2025

Dr. Yonkers: right now we’re in treatment of LC symptoms, which I have learned much from ME/CFS colleagues. #lcwsymposium #longcovidkids

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KP Banks @kpbanks.bsky.social · 21/10/2025

Dr. Yonkers: “We want kids to get better, but we can’t wish it upon them.” #lcwsymposium #longcovidkids

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KP Banks @kpbanks.bsky.social · 21/10/2025

“We need to be careful” when we discuss and diagnose children. #LCWSymposium #longcovidkids

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KP Banks @kpbanks.bsky.social · 21/10/2025

Lael Yonkers from @mgbresearch.bsky.social on MIS-C in kids: 60% of children improve after 2 years, but there are still 40% of children whose symptoms do NOT improve. #LCWSymposium #longcovidkids

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KP Banks @kpbanks.bsky.social · 21/10/2025

My take: if you think your kid has Long COVID—ask your kid’s doctor!! #lcwsymposium

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KP Banks @kpbanks.bsky.social · 21/10/2025

AND she stresses: kids are more likely to be diagnosed *if their provider is asked about Long COVID.* #lcwsymposium #longcovidkids

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KP Banks @kpbanks.bsky.social · 21/10/2025

Dr. Yonkers: there is a better chance for a child to be diagnosed with Long COVID if they miss school or have a facility member. #lcwsymposium #longcovidkids

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KP Banks @kpbanks.bsky.social · 21/10/2025

Day 2 of #LCWSymposium! First up: keynote from Lael Yonker, the Director of the COVID-19 Pediatric Biorepository at @mgbresearch.bsky.social and professor at @harvardmed.bsky.social

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KP Banks @kpbanks.bsky.social · 20/10/2025

From Shlomit Rosenberg from @utoronto.ca on episodic disability research: spirituality was strongest association among energy restoration activities. Not necessarily religion or meditation, but connection to art and nature as well. #LCWSymposium

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KP Banks @kpbanks.bsky.social · 20/10/2025

For example, there is little in the LC literature about getting back to work. In clinical practice, getting back to work is found to be incredibly important for LC patients.

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KP Banks @kpbanks.bsky.social · 20/10/2025

Important point by @kellyobrien25.bsky.social on LC research: just because something has not been measured does not mean that it is not important. #LCWSymposium

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KP Banks @kpbanks.bsky.social · 20/10/2025

My take: it’s not just guidelines and protocols that matter in LC healthcare. We know that LC presents heterogeneously. Personalized care with compassionate clinicians who are knowledgeable and can appreciate the “unknowns” is essential for symptom management. #LCWSymposium

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KP Banks @kpbanks.bsky.social · 20/10/2025

After 3 months, patients reported they were more likely to engage in usual activities, fewer missed workdays, and lower private health care expenses.

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KP Banks @kpbanks.bsky.social · 20/10/2025

Intervention tested was compassionate care paired with individualized self-management plans. Immediately post-intervention, patients felt more able to participate in daily activities compared to a control group.

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KP Banks @kpbanks.bsky.social · 20/10/2025

Excellent presentation on LISTEN trial by Prof. Monica Busse-Morris from @kingsnmpc.bsky.social. #LCWSymposium

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KP Banks @kpbanks.bsky.social · 20/10/2025

The possibilities for treatment have been less pronounced during conversations today, and Dr. Proal’s presentation visibly lifted the mood in the room. @polybiorf.bsky.social

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KP Banks @kpbanks.bsky.social · 20/10/2025

Pleased to see Amy Proal from @polybiorf.bsky.social discuss viral persistence and the possibilities of biotech at #LCWSymposium.

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KP Banks @kpbanks.bsky.social · 20/10/2025

One major point: clinicians should mask during interactions without needing a patient request. That relieves much cognitive stress for LC patients.

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KP Banks @kpbanks.bsky.social · 20/10/2025

Dr. McKay talked about the need for “art and science” of practicing medicine, especially with multiple unknowns.

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KP Banks @kpbanks.bsky.social · 20/10/2025

Dr. Jane McKay from UBC Internal Medicine focused on patient-centered care, particularly in the exam room #lcwsymposium

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Reposted by KP Banks

Ezra S @ezra.zone · 19/10/2025

I know two people who got long covid from infections during doctor appointments where they couldn't easily mask (an MRI and an ENT exam). this is a very real risk. And before anyone says anything - yes, there are MRI-safe respirators, most people don't know about them or have access to them.

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KP Banks @kpbanks.bsky.social · 20/10/2025

Currently attending the 3rd Canadian Symposium on Long COVID! I’m excited to see so many colleagues focused on health systems and service delivery.

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Denis - The COVID Info Guy @thecovidinfoguy.bsky.social · 18/10/2025

Canada: Saskatchewan reported 2 COVID deaths and 11 outbreaks in high-risk settings, including long-term care and group homes in past month. The province’s positivity rate is 7.9%, with Regina 13.8%, north central region 8.6%, and Saskatoon 7.8%. Source: archive.li/KKh5n

Saskatchewan

2 deaths, 11 outbreaks in high-risk settings related to COVID-19 in past month: Sask. Health Authority

34 people were hospitalized with COVID-19 from Sept. 7 to Oct. 4, respiratory illness situation report says

CBC News · Posted: Oct 17, 2025 7:44 PM EDT | Last Updated: 8 hours ago

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C.H. Romatowski @chromatowski.bsky.social · 18/10/2025

#NEISvoid inside baseball— The NIH team’s response to this (the Davenport et al comment) is awful. It’s here: www.nature.com/articles/s41... 1/

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Karen Attiah @karenattiah.bsky.social · 18/09/2025

The last political column I was allowed to write in the @washingtonpost.com was a criticism of Obama. His people took issue with my piece, but we were respectful. Now he is tweeting in support of me. This is how free political speech and respect for debate *actually works*. Or used to work.

Tweet From Obama mentioning my firing from the Washington post. Wirh a photo of me

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jenn m. jackson @jennmjacksonphd.bsky.social · 15/09/2025

When I was placed on the Professor Watchlist in 2021, people sent death threats about my children. I had security officers monitor my 8yo at school. Where is all the outrage for those of us who have been targeted for years? Where is the outrage for our families? My own colleagues are silent.

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KP Banks @kpbanks.bsky.social · 22/08/2025

For those who don’t know, Lin-Manuel Miranda is the patron saint of the dissertation #writelikeyourerunningoutoftime

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