elle carnitine 🪳
@ellecarnitine.bsky.social
immunocompromised • made & kept sick by the state • 🇵🇸🇵🇸🇵🇸
Reposted by elle carnitine 🪳
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/2024/10/a-bo...
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...
epistemologyoftheclinic.blogspot.com
February 26, 2025 at 10:08 PM
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/2024/10/a-bo...
Reposted by elle carnitine 🪳
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?
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?
January 30, 2025 at 2:13 AM
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?
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?
Reposted by elle carnitine 🪳
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. https://go.nature.com/3WILuQi 🧪
February 3, 2025 at 1:04 PM
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. https://go.nature.com/3WILuQi 🧪
Reposted by elle carnitine 🪳
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 £££
February 3, 2025 at 1:32 PM
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 £££
Reposted by elle carnitine 🪳
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.
February 3, 2025 at 10:30 AM
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.
Reposted by elle carnitine 🪳
Here's a thread of my coverage of the post viral ethics workshop hosted and organized by @vmatthiesboon.bsky.social at the Radboud.
February 3, 2025 at 12:18 PM
Here's a thread of my coverage of the post viral ethics workshop hosted and organized by @vmatthiesboon.bsky.social at the Radboud.
Reposted by elle carnitine 🪳
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.
February 3, 2025 at 12:15 PM
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.
Reposted by elle carnitine 🪳
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.
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.
January 22, 2025 at 1:04 PM
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.
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.
Reposted by elle carnitine 🪳
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
January 17, 2025 at 9:40 PM
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
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
January 17, 2025 at 2:50 PM
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
Reposted by elle carnitine 🪳
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/
January 16, 2025 at 10:26 PM
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/
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!
January 17, 2025 at 2:05 PM
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!
Reposted by elle carnitine 🪳
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
January 15, 2025 at 7:26 PM
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
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
A thread on these alarming findings
January 15, 2025 at 3:42 PM
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
A thread on these alarming findings
Reposted by elle carnitine 🪳
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. ⤵️
In California, Incarcerated Teenagers Help Fight Wildfires
"You’re put in danger every time you’re on the fire line.”
www.teenvogue.com
January 8, 2025 at 6:51 PM
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. ⤵️
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
January 8, 2025 at 5:03 PM
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
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?
January 7, 2025 at 2:34 PM
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?
Reposted by elle carnitine 🪳
🧵
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/
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/
January 6, 2025 at 2:27 PM
🧵
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/
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/
Reposted by elle carnitine 🪳
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/
January 2, 2025 at 10:55 AM
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/
Reposted by elle carnitine 🪳
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…
December 24, 2024 at 11:32 AM
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…
Reposted by elle carnitine 🪳
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...
www.actionforme.org.uk/news/sequenc...
SequenceME: first of a kind genetic study
Find out about SequenceME, a first of a kind study to uncover genetic causes of ME
www.actionforme.org.uk
December 16, 2024 at 10:35 AM
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...
www.actionforme.org.uk/news/sequenc...
Reposted by elle carnitine 🪳
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.
December 16, 2024 at 9:49 AM
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.
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...
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...
www.medrxiv.org
December 15, 2024 at 8:45 PM
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...
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...