iiinova — where your digital self keeps evolving

Reposted by elle carnitine 🪳

elle carnitine 🪳 @ellecarnitine.bsky.social · 02/10/2026

Does anyone know an ME-competent doctor in the Brussels area? Asking for a friend, happy to dm if that’s better

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elle carnitine 🪳 @ellecarnitine.bsky.social · 02/10/2026

Does anyone know an ME-competent doctor in the Brussels area? Asking for a friend, happy to dm if that’s better

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elle carnitine 🪳 @ellecarnitine.bsky.social · 28/09/2026

watching football has taught me that it’s not just left/right that I don’t know, but also high/low when it’s relativised to a team. i’m an absolutist

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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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elle carnitine 🪳 @ellecarnitine.bsky.social · 28/09/2026

Cam’s first words to me this morning: “there are so many people out there who think you can walk to the bathroom when you tell them you can’t stand up”

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VirusSucks.com @virussucks.com · 28/09/2026

Mechanisms of sudden cardiac arrest in children during the #COVID19 era. Pediatric #LongCOVID patients having cardiac arrest 😔 Why?

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C.H. Romatowski @chromatowski.bsky.social · 27/09/2026

Very concerned about this happening in the chronic illness community. So many formerly left-leaning people steeping in Elon’s algorithm and now can’t stop talking about how much they hate the left.

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Prometheus Magazine @prometheusmagazine.bsky.social · 03/09/2026

Joe Gallagher and Arianna Introna look at recent British state policy as targeted social murder, contextualising its eugenic function and clarifying the horizons of working-class resistance to this rising tide. prometheus-mag.com/2026/09/03/h...

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valebodi.bsky.social @valebodi.bsky.social · 26/02/2025

What interests me here is not to rehearse this well-trodden ground on how the misogynistic construct of hysteria harms those it directly targets, namely bourgeois white women. Instead, I want to look at how it harms those it does not seem, on the epistemologyoftheclinic.blogspot.com/2024/10/a-bo...

epistemologyoftheclinic.blogspot.com

A Bourgeois White Woman’s Disease

The person with myalgic encephalomyelitis (ME) is a woman. She is frail, weak, confused, and impressionable, and at the same time, she is un...

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Themme Fatale @bimbolaureate.bsky.social · 30/01/2025

People who don’t include disability liberation in their understanding of social justice will never make sense to me. Like what do you MEAN you oppose sexism, racism, and classism, but the minute the lived reality of that oppression starts showing up physically, all your energy just evaporates?

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Nature Portfolio @natureportfolio.nature.com · 03/02/2025

A Comment article in Nature Medicine argues that clinical research should recruit participants from LGBTQIA+ populations, which requires specific actions and policies to create affirming and welcoming environments. go.nature.com/3WILuQi 🧪

Historically underrepresented in clinical studies, LGBTQIA+ people face systemic barriers that perpetuate health inequities and hinder the advancement of medical knowledge tailored to their needs.

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Joe Gallagher @joedgallagher.bsky.social · 03/02/2025

this is the logic of everyone supporting the assisted suicide / euthanasia bill: healthcare, social care and hospice care are indeed all abjectly bad—so let's force people who need them to die instead of improving care because £££

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Fen van Rhijn, MD @fvrhijn.bsky.social · 03/02/2025

First speaker of this session: Dr Paula Muhr on 'it's all in your head'. LC is not FND but often comflated with it. Fnd is still associated what Freud used to call 'hysteria' and all the stuff re: secondary gain also comes from Freud. So, fnd isn't in people's heads, and neither is LC.

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Fen van Rhijn, MD @fvrhijn.bsky.social · 03/02/2025

Here's a thread of my coverage of the post viral ethics workshop hosted and organized by @vmatthiesboon.bsky.social at the Radboud.

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Reposted by elle carnitine 🪳

Fen van Rhijn, MD @fvrhijn.bsky.social · 03/02/2025

What contributes to our invisibility? 1) the unwillingness to register. From 2020/3 there were signals about lc. It took the dutch government 1,5 years to mention it. (long sars1 was known from 2003). But they refused registration. No facts, no meaningful discussion, no numbers to make us visible.

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Naomi Harvey PhD @naomidharvey.bsky.social · 22/01/2025

Remember: ‘liking’ a post has no effect on its visibility here (unlike on Twitter). To help good or informative posts get seen by other people, you have you repost them. This feels like a big part of why it can often feel so quite here.

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Reposted by elle carnitine 🪳

The Sick Times @thesicktimes.org · 17/01/2025

For our Colors of Long COVID series, supported by the Disability Visibility Project, Jenna Laila Bitar writes about being a Palestinian American with #LongCOVID during Israel’s horrific, ongoing genocide in Gaza. bit.ly/3CdQiWU

A photograph on a black background. It shows Nabka Day 2021 in Bay Ridge, Brooklyn. The author is in the center, with two other friends with Long COVID on the right. The late activist and nurse, Shatzi Weisberger, is to the left of Bitar. White text reads, “The Sick Times: Instead of supporting people with Long COVID, our government funds a genocide. By Jenna Laila Bitar.”

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elle carnitine 🪳 @ellecarnitine.bsky.social · 17/01/2025

We can’t afford to put all our eggs in one basket re the causes of Long COVID. We need to investigate every evidence-backed hypothesis because nothing would be worse than pursuing just one (even if it’s the most plausible) and finding out decades down the line it was wrong

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Reposted by elle carnitine 🪳

Putrino Lab @putrinolab.bsky.social · 16/01/2025

Since my episode with the wonderful @longcovidanswer has been released highlighting viral persistence as a major driver of some #LongCOVID pathology, I’ve been asked repeatedly, “what should we do about it?” - totally fair question. Here is my proposed roadmap: 1/

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elle carnitine 🪳 @ellecarnitine.bsky.social · 17/01/2025

Apparently, yet another well-respected figure of Long COVID research has said that we should move past the use of questionnaires and start doing trials using only biomarkers, so here is yet another thread on why that’s confused and harmful to sick people. Buckle up!

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The Sick Times @thesicktimes.org · 15/01/2025

Understanding the similarities and differences between HIV/AIDS and SARS-CoV-2, COVID-19, and Long COVID is vital for informed advocacy. bit.ly/429D9J8

A graphic split into two sides, vertically. On the left, a section of the AIDS quilt, including a tribute to the activist Ryan White. On the right, white text on a black background reads, “THE SICK TIMES: Immune system damage from COVID-19 is different from HIV/AIDS — but the advocacy has parallels. By Emily Benedict.”

The history of HIV/AIDS offers lessons for current organizing to curb the spread of COVID-19 and Long COVID. During the emergence of AIDS in the 1980’s, public health authorities minimized the disease. News outlets reassured the public that having a “strong immune system” would prevent and stop HIV infection. We now know that is not the case.

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elle carnitine 🪳 @ellecarnitine.bsky.social · 15/01/2025

This studied how many people went on to develop ME after COVID. 4.5% developed full-blown ME, incl. moderate to complete interference with ability to walk, climb stairs, carry groceries, or move a chair. 39.5% developed an ME-like illness. A thread on these alarming findings

Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A
Report from the
Observational RECOVER-
Adult Study
13 January 2025

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Teen Vogue @teenvogue.com · 08/01/2025

These teenagers and young men — 95% of whom are Black, Latinx, or Filipino — earn between $2.20 and $4 per hour, plus an additional $1 an hour when they’re actively fighting fires, according to the DJJ. ⤵️

teenvogue.com

In California, Incarcerated Teenagers Help Fight Wildfires

"You’re put in danger every time you’re on the fire line.”

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elle carnitine 🪳 @ellecarnitine.bsky.social · 08/01/2025

I hate being called a “patient” by anyone other than my doctor. I am his patient, yes, but no one else’s and not the vast majority of the time (that is part of the problem). I do not belong to the medical system and hate being described in relation to it. I am a person with Long COVID & ME

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elle carnitine 🪳 @ellecarnitine.bsky.social · 07/01/2025

Liposomal glutathione helps with the poisoned feeling, and helps me gain some movement in my arms and legs. At the moment I cap myself at 500mg per day but this terrible crash is making me want to take more. Would that be safe? How much do you all take?

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Tom Kindlon @tomkindlon.bsky.social · 06/01/2025

🧵 New US research: Impact of extended-course oral nirmatrelvir/ritonavir [Paxlovid] in established Long COVID: a case series www.nature.com/articles/s43... "Extended courses of nirmatrelvir/ritonavir may have meaningful benefits for some people with #LongCOVID but not others" 1/

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Gregg Gonsalves @gregggonsalves.bsky.social · 02/01/2025

So, you may ask, why do I get so angry about the new liberal spin on RFK Jr, as in, "he gets some things right, so let's collaborate on those" or "we have to work with him because he has a huge following we need to reach"? Because I've seen this movie before. 1/

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Todd Davenport @sunsopeningband.bsky.social · 24/12/2024

One thing that’s truly remarkable about Cochrane’s decision to not update the exercise in chronic fatigue review is they’re acting like it was some kind of abstract musing that didn’t involve rejecting an actual solid proposal to update methods that have remained basically unchanged since the 1990s…

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Yann (ME/LC) @me-cfs.bsky.social · 16/12/2024

Action for ME has just announced a follow-up to the DecodeME study that will analyse the whole genome of around 17,000 participants. This is really exciting, and might result with some really interesting data. www.actionforme.org.uk/news/sequenc...

actionforme.org.uk

SequenceME: first of a kind genetic study

Find out about SequenceME, a first of a kind study to uncover genetic causes of ME

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Todd Davenport @sunsopeningband.bsky.social · 16/12/2024

The author team received word today that Cochrane will not accept the protocol we submitted to update the 2017 review on exercise therapy for ME/CFS. To say the very least—a disappointing development for people living with ME/CFS and the state of the science.

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elle carnitine 🪳 @ellecarnitine.bsky.social · 15/12/2024

The Erlangen team just posted a preprint announcing positive results for their BC007 trial! A summary. Reminder that there were two BC007 trials: one run by Berlin Cures which announced negative results, and one run by Erlangen which just published this pre-print www.medrxiv.org/content/10.1...

medrxiv.org

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Reposted by elle carnitine 🪳

Brian Hughes @bmhughes.bsky.social · 05/12/2024

Here is our Rapid Response to that hugely problematic BMJ review of treatments for #LongCovid Delighted to have contributed with @ellecarnitine.bsky.social, @fvrhijn.bsky.social, @lauravictorine.bsky.social, and Xandra Westerhuis We need to learn from the history of #MECFS

bmj.com

Long COVID needs real therapeutics: time to move past disproven approaches

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Naomi Harvey PhD @naomidharvey.bsky.social · 04/12/2024

““Long COVID research should learn from the mistakes of ME research, and swerve away from an inexplicable focus on rehabilitative approaches to the production of well-designed and ambitious trials”

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Laura de Vries @lauravictorine.bsky.social · 04/12/2024

Excellent thread by @humanmanifold.bsky.social summarizing our rapid response to the recent BMJ review on GET/CBT for #longcovid.

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Gillian Kent @cambridgegill.bsky.social · 04/12/2024

Thank you, thank you, thank you @lauravictorine.bsky.social and colleagues for getting this rapid response into the @bmj.com. We need ambitious trials of therapeutics NOW!

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Becca Von Hattifnatt @vonhatti.bsky.social · 04/12/2024

“Long COVID research should learn from the mistakes of ME research, & swerve away from an inexplicable focus on rehabilitative approaches to […]well-designed […] trials into therapeutics that target the immune dysfunction, persistent pathogens, vascular abnormalities, & mitochondrial dysfunction[…]”

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Sam @humanmanifold.bsky.social · 04/12/2024

Rapid response (RR) to the recent BMJ review on #LongCovid treatments by Zeraatkar et al that concluded there's "moderate certainty evidence" for #GET and #CBT: www.bmj.com/content/387/... 1/

bmj.com

Long COVID needs real therapeutics: time to move past disproven approaches

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Laura de Vries @lauravictorine.bsky.social · 04/12/2024

Check out our rapid response on @bmj.com about the need for real therapeutics for #longcovid and #myalgicE #MEcfs and not GET/CBT. Written by: @ellecarnitine.bsky.social @fvrhijn.bsky.social @bmhughes.bsky.social Xandra Westerman and myself. www.bmj.com/content/387/...

bmj.com

Long COVID needs real therapeutics: time to move past disproven approaches

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Laura de Vries @lauravictorine.bsky.social · 04/12/2024

Proud of our 'horizontal writing collective' for writing this rapid response on @bmj.com. Take home: don't treat #LongCovid pts with #PEM with GET/CBT. There's no evidence. Time for real therapeutics. Thanks @ellecarnitine.bsky.social @fvrhijn.bsky.social @bmhughes.bsky.social Xandra Westerman.

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elle carnitine 🪳 @ellecarnitine.bsky.social · 04/12/2024

Our rapid response to the recent BMJ systematic review, according to which CBT and GET are probably effective for Long COVID, is now online: www.bmj.com/content/387/...

bmj.com

Long COVID needs real therapeutics: time to move past disproven approaches

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elle carnitine 🪳 @ellecarnitine.bsky.social · 21/11/2024

Excellent presentation from @patientled.bsky.social at the Demystifying Long COVID conference, where they show the dangers of reinfections for people with and without LC. Interesting that a second reinfection doesn’t increase odds of reporting PEM!

Slide

Results - Post-exertional malaise (DSQ-PEM-SF*)

Odds of post-exertional malaise were higher among reinfected participants, with no difference between those with 2 and 3 or more infections.
Males were less likely to experience PEM than females.

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Amanda Hu @amandalhu.bsky.social · 20/11/2024

Echoing this. I noticed a huge divide between disability justice accounts and medsci accounts in who used alt text. Checking on here a few weeks ago, saw mostly alt text. Now I see the same divide. Bluesky makes it easy to add alt text to gifs and you can use your Photos app to scan text and add it

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PolyBio Research Foundation @polybiorf.bsky.social · 20/11/2024

@putrinolab.bsky.social & CoRE are seeking participants in the NYC area for this PolyBio-supported lumbrokinase trial 👇🏻 They are accepting patients with the following diagnoses: Long COVID, Pre-2020 ME/CFS or Post-treatment Lyme Disease. Reach out to coreresearch@mountsinai.org to sign up.

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elle carnitine 🪳 @ellecarnitine.bsky.social · 20/11/2024

it's always very jarring to see people blanket-recommend nattokinase as if there were no risks involved, when it took me from moderate-severe to very severe overnight

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Todd Davenport @sunsopeningband.bsky.social · 20/11/2024

I treated POTS and ME/CFS in the before times, and was part of one of the first research teams to identify bioenergetic deficits and dysautonomia in people with ME/CFS. I can say ME/CFS screening always has been an unresolved issue in POTS care. There’s a reason exercise works only ~50% of the time.

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Putrino Lab @putrinolab.bsky.social · 20/11/2024

Feels like a good time for a thread about all things exercise for people living with infection (and exposure)-associated complex chronic illnesses (IACCs) such as #MECFS, #LongCOVID and chronic #Lyme /tick- and vector-borne illness. Let’s start with a trip down memory lane. 1/

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Paul Keeble ME/LC @paulkeeble.co.uk · 20/11/2024

Andrew who posted on Phoenix Rising has died on the 5th November. 😢 #mecfs

A blue rose, signifies a death in the ME/CFS community.

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