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)
SO MANY people I want to tag so they can have a little schadenfreude reading this fraud case
"For example, the two researchers’ data showed people with a 'cancer-prone' personality were more than 120 times as likely to die from the disease as were those with a 'healthy' personality"
#NEISVoid
"For example, the two researchers’ data showed people with a 'cancer-prone' personality were more than 120 times as likely to die from the disease as were those with a 'healthy' personality"
#NEISVoid
Diederik Stapel was a massive watershed moment in psychology.
However, he was -- and let's be slightly glib here -- some guy from The Netherlands who wrote social psychology papers.
The full accounting of the Eysenck case is approx, at minimum, TWO STAPELS.
retractionwatch.com/2025/12/03/n...
However, he was -- and let's be slightly glib here -- some guy from The Netherlands who wrote social psychology papers.
The full accounting of the Eysenck case is approx, at minimum, TWO STAPELS.
retractionwatch.com/2025/12/03/n...
Number of ‘unsafe’ publications by psychologist Hans Eysenck could be ‘high and far reaching’
Hans Eysenck A “high and far reaching” number of papers and books by Hans Eysenck could be “unsafe,” according to an updated statement from King’s College London, where the psychologist was a profe…
retractionwatch.com
December 3, 2025 at 6:33 PM
SO MANY people I want to tag so they can have a little schadenfreude reading this fraud case
"For example, the two researchers’ data showed people with a 'cancer-prone' personality were more than 120 times as likely to die from the disease as were those with a 'healthy' personality"
#NEISVoid
"For example, the two researchers’ data showed people with a 'cancer-prone' personality were more than 120 times as likely to die from the disease as were those with a 'healthy' personality"
#NEISVoid
Reposted by Yann (ME/LC)
Our landlords want to sell the house we live in. I haven’t been able to get downstairs for 2.5 years due to #severeME.
I don’t know what we’re going to do. Moving me is likely to make me worse.
Just when you think it can’t get worse with this disease, it does.
I don’t know what we’re going to do. Moving me is likely to make me worse.
Just when you think it can’t get worse with this disease, it does.
December 2, 2025 at 7:39 PM
Our landlords want to sell the house we live in. I haven’t been able to get downstairs for 2.5 years due to #severeME.
I don’t know what we’re going to do. Moving me is likely to make me worse.
Just when you think it can’t get worse with this disease, it does.
I don’t know what we’re going to do. Moving me is likely to make me worse.
Just when you think it can’t get worse with this disease, it does.
Reposted by Yann (ME/LC)
Abolish chronic illness, please. I need to do my dishes and laundry
November 30, 2025 at 4:14 PM
Abolish chronic illness, please. I need to do my dishes and laundry
Today in my canton (ie. state) in Switzerland, we had a referendum to give disabled people under guardianship the right to vote.
Unfortunately 75% of the population voted against. The structural ableism here is very strong and it makes me very sad.
Unfortunately 75% of the population voted against. The structural ableism here is very strong and it makes me very sad.
November 30, 2025 at 11:43 AM
Today in my canton (ie. state) in Switzerland, we had a referendum to give disabled people under guardianship the right to vote.
Unfortunately 75% of the population voted against. The structural ableism here is very strong and it makes me very sad.
Unfortunately 75% of the population voted against. The structural ableism here is very strong and it makes me very sad.
Reposted by Yann (ME/LC)
Reposted by Yann (ME/LC)
Four years after their publication in 2021, 70% of adult NHS ME/CFS services in the UK are still
not following the latest NICE guidelines
#pwME #pwLC
Source: crunchme.org
not following the latest NICE guidelines
#pwME #pwLC
Source: crunchme.org
November 29, 2025 at 9:44 AM
Four years after their publication in 2021, 70% of adult NHS ME/CFS services in the UK are still
not following the latest NICE guidelines
#pwME #pwLC
Source: crunchme.org
not following the latest NICE guidelines
#pwME #pwLC
Source: crunchme.org
Reposted by Yann (ME/LC)
Just as some country's (e.g. Finland), are finding that it is cheaper to house the unhoused than not, the world may eventually realise that it is cheaper to prevent #LongCOVID, than not -
www.cidrap.umn.edu/covid-19/lon...
www.cidrap.umn.edu/covid-19/lon...
Long COVID takes $1 trillion global economic toll each year, analysis suggests
www.cidrap.umn.edu
November 28, 2025 at 4:15 PM
Just as some country's (e.g. Finland), are finding that it is cheaper to house the unhoused than not, the world may eventually realise that it is cheaper to prevent #LongCOVID, than not -
www.cidrap.umn.edu/covid-19/lon...
www.cidrap.umn.edu/covid-19/lon...
German Assisted suicide organisation is seing many applicants from young people with ME/CFS.
Haunting article but glad it was written and not ignored as usual.
Haunting article but glad it was written and not ignored as usual.
Suizidhelfer verzeichnen mehr Anträge von jungen Menschen mit ME/CFS-Erkrankung, darunter auch Post Covid, die Hilfe zur Selbsttötung erbitten.
Long Covid und Selbsttötung: Wenn nur der Suizid als Ausweg erscheint
Suizidhelfer verzeichnen mehr Anträge von jungen Menschen mit ME/CFS-Erkrankung, darunter auch Post Covid, die Hilfe zur Selbsttötung erbitten.
taz.de
November 27, 2025 at 8:30 PM
German Assisted suicide organisation is seing many applicants from young people with ME/CFS.
Haunting article but glad it was written and not ignored as usual.
Haunting article but glad it was written and not ignored as usual.
Reposted by Yann (ME/LC)
The review is open to everyone. Provide your evidence here. Strongly recommend every family persecuted by social workers too lazy to read NICE G206 make their voices heard. www.gov.uk/government/c...
November 6, 2025 at 8:57 AM
The review is open to everyone. Provide your evidence here. Strongly recommend every family persecuted by social workers too lazy to read NICE G206 make their voices heard. www.gov.uk/government/c...
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).