Didier
@medidier.bsky.social
Severe ME after covid infection Feb'22. Young dad. Bedbound. 🛌 #MillionsMissing #pwME #ThereForME #GreatestMEdicalScandal #PEM 🇬🇧🇲🇫🇪🇦🇧🇪
Reposted by Didier
Interesting that this Canadian study found upregulated genes involved in neuronal differentiation and development.
DecodeME and the Snyder preprint also pointed in that direction (although using other genes and approaches).
DecodeME and the Snyder preprint also pointed in that direction (although using other genes and approaches).
5) The researchers also did RNA-sequencing to see which genes are upregulated.
In female patients, these were genes involved in neuronal differentiation and development such as ZNF469, BRINP2, and FEZF2.
In female patients, these were genes involved in neuronal differentiation and development such as ZNF469, BRINP2, and FEZF2.
November 12, 2025 at 10:22 AM
Interesting that this Canadian study found upregulated genes involved in neuronal differentiation and development.
DecodeME and the Snyder preprint also pointed in that direction (although using other genes and approaches).
DecodeME and the Snyder preprint also pointed in that direction (although using other genes and approaches).
Reposted by Didier
the way when doing something that feels meaningful a little piece of you heals at the experience, starved and lapping it up, and another piece of you breaks, at having to rip yourself away from it after only mere minutes, perhaps hours if you’re lucky, never days, only a glimpse #MECFS
November 9, 2025 at 8:28 PM
the way when doing something that feels meaningful a little piece of you heals at the experience, starved and lapping it up, and another piece of you breaks, at having to rip yourself away from it after only mere minutes, perhaps hours if you’re lucky, never days, only a glimpse #MECFS
Reposted by Didier
Please also take a moment to watch @sabinehermisson.bsky.social’s moving talk at the #UniteToFight2024 conference, giving a voice to those most severely affected by #ME #MECFS and a glimpse into the everyday horror they and their loved ones experience: youtu.be/-XfMAYUqgXw
8/
8/
Dr. Sabine Hermisson: The most severely affected – a caregiver's perspective (Day 2, Block 8)
YouTube video by UniteToFight
youtu.be
December 14, 2024 at 2:39 PM
Please also take a moment to watch @sabinehermisson.bsky.social’s moving talk at the #UniteToFight2024 conference, giving a voice to those most severely affected by #ME #MECFS and a glimpse into the everyday horror they and their loved ones experience: youtu.be/-XfMAYUqgXw
8/
8/
Reposted by Didier
For anyone wishing to know more about Mila and the horrible disease #severeME she and many others around the world are suffering from, please read their family's blog (milaandmecfs.wordpress.com) and follow her mother @sabinehermisson.bsky.social
#LearnAboutME
6/
#LearnAboutME
6/
Mila and ME
Blog on Mila's life with very severe ME/CFS
milaandmecfs.wordpress.com
December 14, 2024 at 2:39 PM
For anyone wishing to know more about Mila and the horrible disease #severeME she and many others around the world are suffering from, please read their family's blog (milaandmecfs.wordpress.com) and follow her mother @sabinehermisson.bsky.social
#LearnAboutME
6/
#LearnAboutME
6/
What feels horrendous at this point is the impression of the circle that does not break or change despite passing of time.
Just repeating the same horror. Like a curse. Every generation.
Just repeating the same horror. Like a curse. Every generation.
It’s depressing/enraging/terrifying how little has changed
On this day thirty-two years ago. The Harlow Star, England. 11th November 1993. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
November 11, 2025 at 9:15 AM
What feels horrendous at this point is the impression of the circle that does not break or change despite passing of time.
Just repeating the same horror. Like a curse. Every generation.
Just repeating the same horror. Like a curse. Every generation.
Reposted by Didier
#MS_Selfie Breaking News: Fenebrutinib Press Release
My predictions may be correct. What were yours? Is this the game-changer we were hoping for? => gavingiovannoni.substack.com/p/breaking-n...
My predictions may be correct. What were yours? Is this the game-changer we were hoping for? => gavingiovannoni.substack.com/p/breaking-n...
Breaking news: Fenebrutinib Press Release
My predictions may be correct.
gavingiovannoni.substack.com
November 11, 2025 at 7:34 AM
#MS_Selfie Breaking News: Fenebrutinib Press Release
My predictions may be correct. What were yours? Is this the game-changer we were hoping for? => gavingiovannoni.substack.com/p/breaking-n...
My predictions may be correct. What were yours? Is this the game-changer we were hoping for? => gavingiovannoni.substack.com/p/breaking-n...
If this illness wasn't ruled by medical prejudice, social stigma and economical interest, this news will be in all the frontpages worldwide. For weeks.
Like it has happened every time any given single idiot has ousted an opinion saying we didn't want to get better or we had a mental condition.
Like it has happened every time any given single idiot has ousted an opinion saying we didn't want to get better or we had a mental condition.
RECOVER: 'RECOVER-NEURO clinical trial shares results of three non-drug treatments for cognitive symptoms of Long COVID'
'None of our rehabilitation approaches to treatment for cognitive Long COVID proved to be effective.'
recovercovid.org/news/recover...
'None of our rehabilitation approaches to treatment for cognitive Long COVID proved to be effective.'
recovercovid.org/news/recover...
RECOVER: Researching COVID to Enhance Recovery
The long-term effects of COVID are real. Join the NIH in the search for answers.
recovercovid.org
November 11, 2025 at 7:41 AM
If this illness wasn't ruled by medical prejudice, social stigma and economical interest, this news will be in all the frontpages worldwide. For weeks.
Like it has happened every time any given single idiot has ousted an opinion saying we didn't want to get better or we had a mental condition.
Like it has happened every time any given single idiot has ousted an opinion saying we didn't want to get better or we had a mental condition.
Reposted by Didier
Without going into detail, #pwME #LongCovid ME (because I do not want to inflame an already overly inflamed situtation) the extent of the treachery & exploitation of medical neglect in post infection diseases is EXTRAORDINARY.
People who start out being respectable become corruptible. Why? How? Why?
People who start out being respectable become corruptible. Why? How? Why?
November 10, 2025 at 7:51 PM
Without going into detail, #pwME #LongCovid ME (because I do not want to inflame an already overly inflamed situtation) the extent of the treachery & exploitation of medical neglect in post infection diseases is EXTRAORDINARY.
People who start out being respectable become corruptible. Why? How? Why?
People who start out being respectable become corruptible. Why? How? Why?
Reposted by Didier
"None of our rehabilitation approaches to treatment for cognitive Long COVID proved to be effective."
recovercovid.org/news/recover...
recovercovid.org/news/recover...
RECOVER: Researching COVID to Enhance Recovery
The long-term effects of COVID are real. Join the NIH in the search for answers.
recovercovid.org
November 10, 2025 at 10:39 PM
"None of our rehabilitation approaches to treatment for cognitive Long COVID proved to be effective."
recovercovid.org/news/recover...
recovercovid.org/news/recover...
Reposted by Didier
1995
‘Myalgic Encephalomyelitis also known as Chronic or Post Viral Fatigue Syndrome [ME/CFS]..can be triggered if the bodies immune system reacts abnormally to a virus, major trauma or medications…They have to learn to pace themselves, avoid general anaesthetics, antibiotics & vaccinations..’
‘Myalgic Encephalomyelitis also known as Chronic or Post Viral Fatigue Syndrome [ME/CFS]..can be triggered if the bodies immune system reacts abnormally to a virus, major trauma or medications…They have to learn to pace themselves, avoid general anaesthetics, antibiotics & vaccinations..’
The Chester Chronicle, England. 10th November 1995.
"Misdiagnosis can lead to setbacks if sufferers are encouraged to exercise to 'shake off' their illness".
#mecfs #myalgice #myalgicencephalomyelitis #cfsme
"Misdiagnosis can lead to setbacks if sufferers are encouraged to exercise to 'shake off' their illness".
#mecfs #myalgice #myalgicencephalomyelitis #cfsme
November 10, 2025 at 7:25 AM
1995
‘Myalgic Encephalomyelitis also known as Chronic or Post Viral Fatigue Syndrome [ME/CFS]..can be triggered if the bodies immune system reacts abnormally to a virus, major trauma or medications…They have to learn to pace themselves, avoid general anaesthetics, antibiotics & vaccinations..’
‘Myalgic Encephalomyelitis also known as Chronic or Post Viral Fatigue Syndrome [ME/CFS]..can be triggered if the bodies immune system reacts abnormally to a virus, major trauma or medications…They have to learn to pace themselves, avoid general anaesthetics, antibiotics & vaccinations..’
Reposted by Didier
Can you switch from Ocrevus or rituximab to Kesimpta for MS. Yes. In this phase 3b (unrandomized) trial (OLIKOS study), changing to kesimpta was linked to a low rate of new MRI lesions (2.3% with new/enlarging lesions) and relapses (0.075 per year). pubmed.ncbi.nlm.nih.gov/41196386/
November 10, 2025 at 6:57 AM
Can you switch from Ocrevus or rituximab to Kesimpta for MS. Yes. In this phase 3b (unrandomized) trial (OLIKOS study), changing to kesimpta was linked to a low rate of new MRI lesions (2.3% with new/enlarging lesions) and relapses (0.075 per year). pubmed.ncbi.nlm.nih.gov/41196386/
Reposted by Didier
Multiple sclerosis is generally speaking less heritable than many other neurological diseases. pmc.ncbi.nlm.nih.gov/articles/PMC...
November 10, 2025 at 7:02 AM
Multiple sclerosis is generally speaking less heritable than many other neurological diseases. pmc.ncbi.nlm.nih.gov/articles/PMC...
Reposted by Didier
C'est aussi profondément lié à la disparition des journalistes spécialisés en santé. Il faut lire les publications anglo-saxonnes et sud-asiatiques. Si ça peut vous rassurer (ou pas), l'ensemble des domaines médicaux en France sont concernés.
November 9, 2025 at 4:10 PM
C'est aussi profondément lié à la disparition des journalistes spécialisés en santé. Il faut lire les publications anglo-saxonnes et sud-asiatiques. Si ça peut vous rassurer (ou pas), l'ensemble des domaines médicaux en France sont concernés.
Ce fil.
Juste 'spot on'.
👏
Juste 'spot on'.
👏
L’intervention et la posture de la Pr. Ranque illustrent, de manière exemplaire, la persistance d’un paradigme médical spécifiquement français: une vision de la maladie chronique centrée sur la moralisation de la plainte, la psychologisation des symptômes et la délégitimation des savoirs profanes.
La suite.
On a un profil type, qui, dites donc, fait penser à la bonne vieille hystérie.
Et les patient-es de l’association souffrant d’un lupus ou de Sjrogen ont eu le plaisir d’apprendre qu’un traitement curatif pour leur maladie existait.
On a un profil type, qui, dites donc, fait penser à la bonne vieille hystérie.
Et les patient-es de l’association souffrant d’un lupus ou de Sjrogen ont eu le plaisir d’apprendre qu’un traitement curatif pour leur maladie existait.
November 9, 2025 at 3:57 PM
Ce fil.
Juste 'spot on'.
👏
Juste 'spot on'.
👏
Reposted by Didier
Cette approche, héritée du modèle psychosomatique des années 1970 et des cadres psychiatriques post-hystériques, se situe désormais à rebours des avancées internationales, tant sur le plan épistémologique que scientifique.
November 8, 2025 at 6:07 PM
Cette approche, héritée du modèle psychosomatique des années 1970 et des cadres psychiatriques post-hystériques, se situe désormais à rebours des avancées internationales, tant sur le plan épistémologique que scientifique.
Ça fait 4 ans que je suis (très) malade, à 35 ans ma vie s'est arrêtée, comme bcp d'autres personnes avec un covid long de type encéphalomyélite myalgique sévère.
L’intervention et la posture de la Pr. Ranque illustrent, de manière exemplaire, la persistance d’un paradigme médical spécifiquement français: une vision de la maladie chronique centrée sur la moralisation de la plainte, la psychologisation des symptômes et la délégitimation des savoirs profanes.
La suite.
On a un profil type, qui, dites donc, fait penser à la bonne vieille hystérie.
Et les patient-es de l’association souffrant d’un lupus ou de Sjrogen ont eu le plaisir d’apprendre qu’un traitement curatif pour leur maladie existait.
On a un profil type, qui, dites donc, fait penser à la bonne vieille hystérie.
Et les patient-es de l’association souffrant d’un lupus ou de Sjrogen ont eu le plaisir d’apprendre qu’un traitement curatif pour leur maladie existait.
November 9, 2025 at 3:53 PM
Ça fait 4 ans que je suis (très) malade, à 35 ans ma vie s'est arrêtée, comme bcp d'autres personnes avec un covid long de type encéphalomyélite myalgique sévère.
Reposted by Didier
4) A previous study by Lipkin's group also found "no consistent group-specific differences" in viral particles in blood, feces, and saliva and suggested that future investigations should focus on adaptive immune responses rather than surveillance for viral gene products.
November 8, 2025 at 3:06 PM
4) A previous study by Lipkin's group also found "no consistent group-specific differences" in viral particles in blood, feces, and saliva and suggested that future investigations should focus on adaptive immune responses rather than surveillance for viral gene products.
Reposted by Didier
Forschung zur ME/CFS-Pathologie weist auf mögliche Behandlungsmethoden hin.
Auf der Jahrestagung der International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) 2025 fassten die Referenten ihre Forschung zu den zugrunde liegenden Pathomechanismen von ME/CFS …
Auf der Jahrestagung der International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) 2025 fassten die Referenten ihre Forschung zu den zugrunde liegenden Pathomechanismen von ME/CFS …
November 8, 2025 at 11:38 PM
Forschung zur ME/CFS-Pathologie weist auf mögliche Behandlungsmethoden hin.
Auf der Jahrestagung der International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) 2025 fassten die Referenten ihre Forschung zu den zugrunde liegenden Pathomechanismen von ME/CFS …
Auf der Jahrestagung der International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) 2025 fassten die Referenten ihre Forschung zu den zugrunde liegenden Pathomechanismen von ME/CFS …
Reposted by Didier
🧵 Important new study out in Cell Reports Medicine (Shahbaz et al. 2025):
👉 Long Covid with ME/CFS isn’t the same in women and men - biologically.
👉 And it’s not “fatigue.” It’s immune, hormonal, and neurological chaos.
Let’s break it down layperson style 👇
👉 Long Covid with ME/CFS isn’t the same in women and men - biologically.
👉 And it’s not “fatigue.” It’s immune, hormonal, and neurological chaos.
Let’s break it down layperson style 👇
November 8, 2025 at 11:47 AM
🧵 Important new study out in Cell Reports Medicine (Shahbaz et al. 2025):
👉 Long Covid with ME/CFS isn’t the same in women and men - biologically.
👉 And it’s not “fatigue.” It’s immune, hormonal, and neurological chaos.
Let’s break it down layperson style 👇
👉 Long Covid with ME/CFS isn’t the same in women and men - biologically.
👉 And it’s not “fatigue.” It’s immune, hormonal, and neurological chaos.
Let’s break it down layperson style 👇
Indeed! Excellent stuff!
Very frustrating is taking so long since 2020 to implement smtg that seem quite 'obvious'...
#LongCovid #MECFS
Very frustrating is taking so long since 2020 to implement smtg that seem quite 'obvious'...
#LongCovid #MECFS
Such an important topic, thank you Chloé, @lisamccorkell.bsky.social @julialmv.bsky.social @leticiasaurus.bsky.social and coauthors for drawing attention to it!
#LongCovid #MECFS
#LongCovid #MECFS
Many Long COVID trials have reported negative results in 2024 and 2025. In our Comment for @thelancetinfdis.bsky.social we argue that inadequate outcome measures might have played a role. (1/12)
November 8, 2025 at 7:47 AM
Indeed! Excellent stuff!
Very frustrating is taking so long since 2020 to implement smtg that seem quite 'obvious'...
#LongCovid #MECFS
Very frustrating is taking so long since 2020 to implement smtg that seem quite 'obvious'...
#LongCovid #MECFS
Reposted by Didier
But there are two problems with this:
1) the hallmark of ME is PEM, not fatigue
2) how fatigued people feel is subjective
This is why people with ME prefer to describe the severity of their disease in terms of how much they can do. (6/12)
1) the hallmark of ME is PEM, not fatigue
2) how fatigued people feel is subjective
This is why people with ME prefer to describe the severity of their disease in terms of how much they can do. (6/12)
November 8, 2025 at 12:08 AM
But there are two problems with this:
1) the hallmark of ME is PEM, not fatigue
2) how fatigued people feel is subjective
This is why people with ME prefer to describe the severity of their disease in terms of how much they can do. (6/12)
1) the hallmark of ME is PEM, not fatigue
2) how fatigued people feel is subjective
This is why people with ME prefer to describe the severity of their disease in terms of how much they can do. (6/12)
Reposted by Didier
One well-defined Long COVID
presentation is ME (myalgic encephalomyelitis). ME is sometimes evaluated using fatigue questionnaires, questionnaires that ask how fatigued people are. (5/12)
presentation is ME (myalgic encephalomyelitis). ME is sometimes evaluated using fatigue questionnaires, questionnaires that ask how fatigued people are. (5/12)
November 8, 2025 at 12:08 AM
One well-defined Long COVID
presentation is ME (myalgic encephalomyelitis). ME is sometimes evaluated using fatigue questionnaires, questionnaires that ask how fatigued people are. (5/12)
presentation is ME (myalgic encephalomyelitis). ME is sometimes evaluated using fatigue questionnaires, questionnaires that ask how fatigued people are. (5/12)
Aleluya! A miracle! Stop the press!
A study stratifying which population among LC they are talking about "long covid with MECFS"
A study stratifying which population among LC they are talking about "long covid with MECFS"
The dysregulated immune system in #LongCovid with #MECFS. with sex-specific changes, increased inflammation (as seen by cells, chemokines and cytokines), and disrupted hormone levels www.cell.com/cell-reports...
November 8, 2025 at 7:39 AM
Aleluya! A miracle! Stop the press!
A study stratifying which population among LC they are talking about "long covid with MECFS"
A study stratifying which population among LC they are talking about "long covid with MECFS"
Reposted by Didier
Before #MECFS, Nicky was always on the move — raising her children, volunteering, and giving back. She and her husband even opened their home to more than 20 foster children, creating a safe and loving space for each one.
Read Nicky's story👉 ow.ly/szlG50XoneM.
Read Nicky's story👉 ow.ly/szlG50XoneM.
November 7, 2025 at 2:35 PM
Before #MECFS, Nicky was always on the move — raising her children, volunteering, and giving back. She and her husband even opened their home to more than 20 foster children, creating a safe and loving space for each one.
Read Nicky's story👉 ow.ly/szlG50XoneM.
Read Nicky's story👉 ow.ly/szlG50XoneM.
Reposted by Didier
A new analysis shows that no evidence exists for using graded exercise therapy for #MECFS - an issue that has come to the forefront again with #LongCovid research, reports @medscape.com.
Read the full Medscape article here: wb.md/4oWpDRk
Read the full Medscape article here: wb.md/4oWpDRk
No Evidence Supports Using Graded Exercise for ME/CFS
Studies examining the effects of activity-based interventions haven’t required post-exertional malaise as a core criterion for the now-termed ‘myalgic encephalomyelitis/chronic fatigue syndrome.’
wb.md
November 6, 2025 at 7:42 PM
A new analysis shows that no evidence exists for using graded exercise therapy for #MECFS - an issue that has come to the forefront again with #LongCovid research, reports @medscape.com.
Read the full Medscape article here: wb.md/4oWpDRk
Read the full Medscape article here: wb.md/4oWpDRk