Yann (ME/LC)
@me-cfs.bsky.social
Disabled by very Severe Post-COVID ME/CFS. Not always able to use phone. Bedridden. Unable to Speak.
I care.
Ⓐ💚, (FR/DE/EN, but posts in english)
Clinging onto the ledge above the abyss.
I care.
Ⓐ💚, (FR/DE/EN, but posts in english)
Clinging onto the ledge above the abyss.
Pinned
Yann (ME/LC)
@me-cfs.bsky.social
· Mar 20
As a person with Very Severe ME, I hate how articles describe ME.
“chronic fatigue, some people can’t exercise and work, often people have headaches and nausea”.
I haven’t
* left my bed in 2 years
* spoke in 1.5 years
* heard a human voice in 1.5 years
And that’s how you describe my illness?
“chronic fatigue, some people can’t exercise and work, often people have headaches and nausea”.
I haven’t
* left my bed in 2 years
* spoke in 1.5 years
* heard a human voice in 1.5 years
And that’s how you describe my illness?
Reposted by Yann (ME/LC)
1) INFO FOR RESEARCHERS: The charity ME Research UK (MERUK) has an open call for PhD-level research funding.
Applicants should submit an Outline Proposal Form before Friday, 9 January 2026.
Applicants should submit an Outline Proposal Form before Friday, 9 January 2026.
November 18, 2025 at 2:30 PM
1) INFO FOR RESEARCHERS: The charity ME Research UK (MERUK) has an open call for PhD-level research funding.
Applicants should submit an Outline Proposal Form before Friday, 9 January 2026.
Applicants should submit an Outline Proposal Form before Friday, 9 January 2026.
Reposted by Yann (ME/LC)
Just to say how much I love and appreciate every one of the #ME brigade that post on here. Some can only watch and that’s ok, some have valuable information and that’s ok, some are scared and that’s ok, all of us understand and care and dare to hope for better days to come. 💙
November 17, 2025 at 12:34 PM
Just to say how much I love and appreciate every one of the #ME brigade that post on here. Some can only watch and that’s ok, some have valuable information and that’s ok, some are scared and that’s ok, all of us understand and care and dare to hope for better days to come. 💙
Reposted by Yann (ME/LC)
“Don’t let the bastards grind you down. I love you all.”
November 15, 2025 at 6:15 AM
“Don’t let the bastards grind you down. I love you all.”
Reposted by Yann (ME/LC)
🥀 C’est avec une immense tristesse que nous vous partageons le décès de Nolwenn, une jeune femme de 30 ans atteinte d’EM.
Engagée, elle suivait de près l’actualité de notre association et avait participé activement à l’une de nos manifestations à Rennes.
Engagée, elle suivait de près l’actualité de notre association et avait participé activement à l’une de nos manifestations à Rennes.
November 9, 2025 at 3:58 PM
🥀 C’est avec une immense tristesse que nous vous partageons le décès de Nolwenn, une jeune femme de 30 ans atteinte d’EM.
Engagée, elle suivait de près l’actualité de notre association et avait participé activement à l’une de nos manifestations à Rennes.
Engagée, elle suivait de près l’actualité de notre association et avait participé activement à l’une de nos manifestations à Rennes.
Reposted by Yann (ME/LC)
1) New preprint from the Stanford group of Ron Davis.
They looked for 185 human viruses, and found traces of 17 viruses in patients or controls. "Surprisingly", the authors write "more viruses were found in the healthy controls than in the ME/CFS patients."
They looked for 185 human viruses, and found traces of 17 viruses in patients or controls. "Surprisingly", the authors write "more viruses were found in the healthy controls than in the ME/CFS patients."
November 8, 2025 at 3:06 PM
1) New preprint from the Stanford group of Ron Davis.
They looked for 185 human viruses, and found traces of 17 viruses in patients or controls. "Surprisingly", the authors write "more viruses were found in the healthy controls than in the ME/CFS patients."
They looked for 185 human viruses, and found traces of 17 viruses in patients or controls. "Surprisingly", the authors write "more viruses were found in the healthy controls than in the ME/CFS patients."
@bmhughes.bsky.social makes a good point in his new book.
Many leftist movements exclude and marginalise disabled people within rhetoric and theory, focusing nearly only on “working people”, “working class”
They may critique commodity fetishism, but can end up with a sort of labour fetishism…
Many leftist movements exclude and marginalise disabled people within rhetoric and theory, focusing nearly only on “working people”, “working class”
They may critique commodity fetishism, but can end up with a sort of labour fetishism…
November 5, 2025 at 2:23 PM
@bmhughes.bsky.social makes a good point in his new book.
Many leftist movements exclude and marginalise disabled people within rhetoric and theory, focusing nearly only on “working people”, “working class”
They may critique commodity fetishism, but can end up with a sort of labour fetishism…
Many leftist movements exclude and marginalise disabled people within rhetoric and theory, focusing nearly only on “working people”, “working class”
They may critique commodity fetishism, but can end up with a sort of labour fetishism…
Reposted by Yann (ME/LC)
Looks like this trial actually showed that HBOT likely doesn't work in ME/CFS.
They excluded 7/37 participants who dropped out
They do not compare results to a control group
Participants received 40 sessions
And still, the improvement was only 6.3 points on the SF-36 PF scale
They excluded 7/37 participants who dropped out
They do not compare results to a control group
Participants received 40 sessions
And still, the improvement was only 6.3 points on the SF-36 PF scale
1) 🇩🇪 A new preprint by the Charité group reports improvements after 40 sessions of hyperbaric oxygen therapy in 30 ME/CFS patients.
However, there was no control group, and the improvements were far from impressive.
However, there was no control group, and the improvements were far from impressive.
November 2, 2025 at 10:42 AM
Looks like this trial actually showed that HBOT likely doesn't work in ME/CFS.
They excluded 7/37 participants who dropped out
They do not compare results to a control group
Participants received 40 sessions
And still, the improvement was only 6.3 points on the SF-36 PF scale
They excluded 7/37 participants who dropped out
They do not compare results to a control group
Participants received 40 sessions
And still, the improvement was only 6.3 points on the SF-36 PF scale
Unfortunately, Reality is Real. Real bummer.
Heating pads existing partially makes up for it though.
Heating pads existing partially makes up for it though.
November 1, 2025 at 11:00 PM
Unfortunately, Reality is Real. Real bummer.
Heating pads existing partially makes up for it though.
Heating pads existing partially makes up for it though.
Obvious cases of ME/CFS being labelled only as as Post-COVID is not only erasure, but also
harmful. The people affected miss out on some crucial PEM and severity specific info.
(Obviously, ME/CFS is rarely managed optimally by the medical system, but neither is long COVID!)
harmful. The people affected miss out on some crucial PEM and severity specific info.
(Obviously, ME/CFS is rarely managed optimally by the medical system, but neither is long COVID!)
Medscape: 'Secondary Infections and Long COVID in Kids: What Pediatricians Need to Know'
'...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..'
www.medscape.com/viewarticle/...
'...pediatricians should watch for are profound fatigue and post-exertional malaise..this is a debilitating and hallmark symptom of long COVID..'
www.medscape.com/viewarticle/...
Long COVID in Kids: What Pediatricians Need to Know
New research suggests that children and teens who get COVID a second time face twice the risk for developing long COVID.
www.medscape.com
October 29, 2025 at 3:47 PM
Obvious cases of ME/CFS being labelled only as as Post-COVID is not only erasure, but also
harmful. The people affected miss out on some crucial PEM and severity specific info.
(Obviously, ME/CFS is rarely managed optimally by the medical system, but neither is long COVID!)
harmful. The people affected miss out on some crucial PEM and severity specific info.
(Obviously, ME/CFS is rarely managed optimally by the medical system, but neither is long COVID!)
Reposted by Yann (ME/LC)
ME/CFS researcher and psychologist Brian Hughes @bmhughes.bsky.social has a new book out called "Psychology's Quiet Conservatism"
link.springer.com/book/10.1007...
Screenshot from latest Science for ME weekly update
#MEcfs #LongCovid
link.springer.com/book/10.1007...
Screenshot from latest Science for ME weekly update
#MEcfs #LongCovid
October 28, 2025 at 1:44 AM
ME/CFS researcher and psychologist Brian Hughes @bmhughes.bsky.social has a new book out called "Psychology's Quiet Conservatism"
link.springer.com/book/10.1007...
Screenshot from latest Science for ME weekly update
#MEcfs #LongCovid
link.springer.com/book/10.1007...
Screenshot from latest Science for ME weekly update
#MEcfs #LongCovid
Reposted by Yann (ME/LC)
"Trial By Error: Some Thoughts on Ten Years of Trial By Error" By David Tuller @davetuller1.bsky.social (25 October 2025)
virology.ws/2025/10/25/t...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
virology.ws/2025/10/25/t...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
October 25, 2025 at 7:41 PM
"Trial By Error: Some Thoughts on Ten Years of Trial By Error" By David Tuller @davetuller1.bsky.social (25 October 2025)
virology.ws/2025/10/25/t...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
virology.ws/2025/10/25/t...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
Reposted by Yann (ME/LC)
The World ME Alliance is hiring! Apply now for the role of Head of Advocacy & Comms — shaping global campaigns for people with ME, a disease long neglected & stigmatized.
💻 Remote (UK or +/-3 hours of pacific time)
⏰ 14 hrs/wk
Apply by 10 Nov 2025 👉
worldmealliance.org/2025/10/were...
💻 Remote (UK or +/-3 hours of pacific time)
⏰ 14 hrs/wk
Apply by 10 Nov 2025 👉
worldmealliance.org/2025/10/were...
We're recruiting a new Head of Advocacy and Comms - World ME Alliance
We’re recruiting a new Head of Advocacy and Communications for the World ME Alliance. Might you or someone you know be interested? About the Role Are you a strategic thinker who loves connecting peopl...
worldmealliance.org
October 20, 2025 at 6:29 PM
The World ME Alliance is hiring! Apply now for the role of Head of Advocacy & Comms — shaping global campaigns for people with ME, a disease long neglected & stigmatized.
💻 Remote (UK or +/-3 hours of pacific time)
⏰ 14 hrs/wk
Apply by 10 Nov 2025 👉
worldmealliance.org/2025/10/were...
💻 Remote (UK or +/-3 hours of pacific time)
⏰ 14 hrs/wk
Apply by 10 Nov 2025 👉
worldmealliance.org/2025/10/were...
Reposted by Yann (ME/LC)
📣 Deux nouvelles initiatives engagées pour la reconnaissance de l'EM. Infos ci-dessous 👇
October 27, 2025 at 1:46 PM
📣 Deux nouvelles initiatives engagées pour la reconnaissance de l'EM. Infos ci-dessous 👇
Today we’re playing did someone hammer a nail in my forehead or do i just have a migraine
October 24, 2025 at 12:47 PM
Today we’re playing did someone hammer a nail in my forehead or do i just have a migraine
Number 1 rule of ME/CFS:
It can always get worse.
It can always get worse.
October 24, 2025 at 12:38 PM
Number 1 rule of ME/CFS:
It can always get worse.
It can always get worse.
Reposted by Yann (ME/LC)
Thank you, ME/CFS blog, for these brilliant summaries and insights. If you are interested in ME/CFS research, and what's important within it, take a look (and consider following them).
1) We watched the 2025 Stanford Symposium on ME/CFS and summarized many of the presentations.
While it's great to see so many talented people focusing on ME/CFS, we also noted that a lot of research is focused on hypotheses that are not yet supported by strong evidence.
While it's great to see so many talented people focusing on ME/CFS, we also noted that a lot of research is focused on hypotheses that are not yet supported by strong evidence.
October 21, 2025 at 7:33 PM
Thank you, ME/CFS blog, for these brilliant summaries and insights. If you are interested in ME/CFS research, and what's important within it, take a look (and consider following them).
Reposted by Yann (ME/LC)
There must be well over 100 ME/CFS biomarker studies, all claiming success – but none have been replicated.
And that's probably no better bet for forgetting media coverage either – it makes such a nice story (every time).
And that's probably no better bet for forgetting media coverage either – it makes such a nice story (every time).
The research used to claim reliability of a ME/CFS blood test has important limitations, shown here.
www.theguardian.com/society/2025...
www.theguardian.com/society/2025...
October 8, 2025 at 8:21 PM
There must be well over 100 ME/CFS biomarker studies, all claiming success – but none have been replicated.
And that's probably no better bet for forgetting media coverage either – it makes such a nice story (every time).
And that's probably no better bet for forgetting media coverage either – it makes such a nice story (every time).
Reposted by Yann (ME/LC)
"there's no money for that" is a lie told by people who always seem to find a bottomless budget line for the things that serve their interests...
October 2, 2025 at 10:08 PM
"there's no money for that" is a lie told by people who always seem to find a bottomless budget line for the things that serve their interests...
Romandie next please 🙏
Sometimes direct democracy delivers. Not always, but sometimes it really does. www.swissinfo.ch/eng/swiss-de...
Zurich voters ban noisy leaf blowers
Zurich voters ban petrol-powered leaf blowers.
www.swissinfo.ch
September 29, 2025 at 12:41 PM
Romandie next please 🙏
I’m so angry at how shitty the world treats pwME. How many of us die for nothing to change. The pain that happens in circles without end.
We’re treated like dogs begging for scraps.
We’re treated like dogs begging for scraps.
September 23, 2025 at 10:53 PM
I’m so angry at how shitty the world treats pwME. How many of us die for nothing to change. The pain that happens in circles without end.
We’re treated like dogs begging for scraps.
We’re treated like dogs begging for scraps.
Reposted by Yann (ME/LC)
It’s telling that it’s mainly cis, straight, able-bodied people crying, “How dare someone lose their life over politics!” That reaction shows they’ve never had skin in the game. For them, politics is abstract. For the rest of us, politics is survival—how we navigate the world just to stay alive.
September 15, 2025 at 9:12 PM
It’s telling that it’s mainly cis, straight, able-bodied people crying, “How dare someone lose their life over politics!” That reaction shows they’ve never had skin in the game. For them, politics is abstract. For the rest of us, politics is survival—how we navigate the world just to stay alive.
Reposted by Yann (ME/LC)
(US) "Keeping ME/CFS in the Fight on Capitol Hill"
solvecfs.org/keeping-me-c...
September 11 update from the Solve ME/CFS Initiative @solveme.bsky.social . At the end it lists 2 ways you can help.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
solvecfs.org/keeping-me-c...
September 11 update from the Solve ME/CFS Initiative @solveme.bsky.social . At the end it lists 2 ways you can help.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
September 13, 2025 at 3:50 PM
(US) "Keeping ME/CFS in the Fight on Capitol Hill"
solvecfs.org/keeping-me-c...
September 11 update from the Solve ME/CFS Initiative @solveme.bsky.social . At the end it lists 2 ways you can help.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
solvecfs.org/keeping-me-c...
September 11 update from the Solve ME/CFS Initiative @solveme.bsky.social . At the end it lists 2 ways you can help.
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
