iiinova — where your digital self keeps evolving

elle carnitine 🪳 @ellecarnitine.bsky.social · 06/10/2026

It’s tuesday of the nobel week, so you know what that means: praying Murakami doesn’t get it 🤞🏻

000

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

347

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

That would be amazing, if you don’t mind

010

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

No on the contrary I would really appreciate it!!

000

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

347

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

To play “high” up the pitch is to play close to the opponent’s goal, so what’s high for one team is going to be low for the other (just like what’s left for one team is going to be right for the other). And for some reason I find this extremely confusing (and don’t know right from left in life!)

020

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

Basic deductive skills missing in the abled population!

031

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

110

Reposted by elle carnitine 🪳

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

03815

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

Sucks not to be able to stand up, but it sure is nice to reconnect :))

120

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”

2100

Reposted by elle carnitine 🪳

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?

143

Reposted by elle carnitine 🪳

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.

14714

Reposted by elle carnitine 🪳

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...

0157

Reposted by elle carnitine 🪳

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...

181

Reposted by elle carnitine 🪳

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?

4578244

Reposted by elle carnitine 🪳

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.

07924

Reposted by elle carnitine 🪳

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 £££

253

Reposted by elle carnitine 🪳

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.

1122

Reposted by elle carnitine 🪳

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.

22812

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.

161

Reposted by elle carnitine 🪳

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.

55943

elle carnitine 🪳 @ellecarnitine.bsky.social · 20/01/2025

Les consultations durent 20mins mais il prend le temps de parler plus longtemps s’il le faut

010

elle carnitine 🪳 @ellecarnitine.bsky.social · 20/01/2025

Have you tried contraceptives for stopping your period? i used to have this exact problem and that’s how i solved it. I’m aware it doesn’t work for everyone though

120

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.”

13716

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

My point is that they can only be a treatment barometer if they are correlated with an independent measure of disease severity, and we need questionnaires to check that!

000

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

“But what could be driving immune dysfunction if not viral persistance?” “But why would some people get sick and not others if it was viral persistance and not person-specific immune dysfunction?” These are questions that need to be investigated, not inquiry terminating gotchas

030

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

I feel so frustrated when people proclaim the root cause couldn’t be anything other than viral persistance, or anything other than autoimmunity, or anything other than immune dysfunction. We simply don’t know yet. We know that all of these are involved and they all need pursuing

140

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

182

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/

1216264

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

This is essential to be able to determine who should be given what intervention, since we know that it’s very unlikely everyone with LC will need the same intervention. So biomarker research is urgent and crucial. But biomarkers will not replace questionnaires

020

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

None of this is to say that biomarkers aren’t essential. Most crucially, we know that people w the same disease presentation respond differently to interventions; we currently have no way to predict how someone will respond to any given treatment. We need biomarkers for subtypes

110

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

Medicine is for us, its aim is to improve our lives. Unless we had a biomarker that perfectly correlated with all domains of health related quality of life (highly implausible), we’d still need questionnaires in addition to biomarkers

120

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

In HIV for instance, once your viral load is undetectable, doctors consider their job done. But many people whose viral load is undetectable still experience sometimes disabling fatigue and brain fog, among other symptoms. These aren’t recorded in studies that only use biomarkers

110

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

But sick people don’t only care about how long we’ll live, we also care about how well we’ll live. There are so many examples in medicine of fields where the very concept of quality of life is entirely absent.

131

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

Well, their biomarkers are supposed to correlate with time to death. (I say “supposed” because there are many cases where this was just assumed and it didn’t hold; e.g. findings that shrinking a tumour didn’t actually lead to living longer.)

110

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

Now to the second part of my argument: in other fields (such as cancer), there is a huge push from sick people to include questionnaires. Why, if they have biomarkers? What sense does that make?

121

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

To recap what I’ve said so far: the only way to check that biomarkers are a good measure of disease severity is to have an independent measure of disease severity, and in LC and ME, that requires using questionnaires. Hence, developing good questionnaires is essential and urgent

120

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

But we also need questionnaires that capture *all* the symptoms of Long COVID, including those that have nothing to do with ME, and their severity. This should be objective: “how far can you walk?” vs “do you feel slightly, moderately, or very disabled in your capacity to walk?”

120

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

But that doesn’t mean all questionnaires are bad. We urgently need good questionnaires that do capture the severity of LC, including the ME subtype. We have the FUNCAP which is brilliant at capturing functional capacity in those with PEM, and that is a treasure of a tool.

130

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

Now, the Chalder Fatigue Scale, or the fatigue subscales of PROMIS and FACIT (you can Google them if you haven’t seen me complain about them before!) are obviously bad. They can’t capture the reality of ME, nor that of non-ME LC which for instance might present as cardiovascular

121

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

But in Long COVID and in ME, that would obviously not be a good measure. Instead, we need to know what the life of people is like: are they having symptoms, how bad, how much do these symptoms affect their capacity to do things. In other words, we need *questionnaires*

131

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

So we need to make sure that our potential biomarker correlates with disease severity. And to do that, we need an independent measure of disease severity. In some fields like cancer and HIV/AIDS, they used time to death as this independent measure

120

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

But in order to use a biomarker as such, we need to make sure it correlates with disease severity. If a biomarker can pick up e.g. who has the disease and who doesn’t, but not how severely affected anyone is, it will be useless in trials where we look for *improvements*.

151

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

The idea is that biomarkers are objective measures of disease, they are easier to measure, less prone to various biases, and more reliable than patient-reported outcomes. So people argue that when we’ll have biomarkers for Long COVID and for ME, things will be much better.

131

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!

274

Reposted by elle carnitine 🪳

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.

111845