ME/CFS research
@cfsresearch.bsky.social
Interested in research into ME/CFS/MECFS, FND and related conditions. https://medium.com/@cfs_research
Reposted by ME/CFS research
The problem with the 2-day CPET (apart from it being inappropriate for patients as it causes major PEM) is that it doesn't distinguish between sedentary patients and ME/CFS, so isn't useful for diagnosis. Also, it seems that the study authors (and Sanne's psychologist) make a fundamental error in
January 21, 2026 at 1:05 AM
The problem with the 2-day CPET (apart from it being inappropriate for patients as it causes major PEM) is that it doesn't distinguish between sedentary patients and ME/CFS, so isn't useful for diagnosis. Also, it seems that the study authors (and Sanne's psychologist) make a fundamental error in
Reposted by ME/CFS research
🧠⚡️💊New @nature.com publication !
Mimicking opioid analgesia in cortical pain circuits
We built a brain-behavior framework to decode spontaneous chronic pain in mice—and to biologically mimic morphine with a synthetic opioid gene therapy
nature.com/articles/s41...
@pennmedicine.bsky.social
Mimicking opioid analgesia in cortical pain circuits
We built a brain-behavior framework to decode spontaneous chronic pain in mice—and to biologically mimic morphine with a synthetic opioid gene therapy
nature.com/articles/s41...
@pennmedicine.bsky.social
Researchers identify the neurons involved in the emotional distress associated with pain
go.nature.com/4qIKkB8
go.nature.com/4qIKkB8
Chronic pain could be eased by uncoupling the sensory and emotional experiences
Researchers identify the neurons involved in the emotional distress associated with pain, and design a genetic approach that could soothe suffering without opioid drugs.
go.nature.com
January 8, 2026 at 6:01 PM
🧠⚡️💊New @nature.com publication !
Mimicking opioid analgesia in cortical pain circuits
We built a brain-behavior framework to decode spontaneous chronic pain in mice—and to biologically mimic morphine with a synthetic opioid gene therapy
nature.com/articles/s41...
@pennmedicine.bsky.social
Mimicking opioid analgesia in cortical pain circuits
We built a brain-behavior framework to decode spontaneous chronic pain in mice—and to biologically mimic morphine with a synthetic opioid gene therapy
nature.com/articles/s41...
@pennmedicine.bsky.social
Reposted by ME/CFS research
1) With both symptoms and genetic evidence pointing to the brain, should the ME/CFS community do a coordinated push for brain banks and autopsy studies?
The ongoing post-mortem studies in the Netherlands and the UK will give us a glimpse of how feasible and useful this is.
The ongoing post-mortem studies in the Netherlands and the UK will give us a glimpse of how feasible and useful this is.
January 8, 2026 at 9:00 AM
1) With both symptoms and genetic evidence pointing to the brain, should the ME/CFS community do a coordinated push for brain banks and autopsy studies?
The ongoing post-mortem studies in the Netherlands and the UK will give us a glimpse of how feasible and useful this is.
The ongoing post-mortem studies in the Netherlands and the UK will give us a glimpse of how feasible and useful this is.
Reposted by ME/CFS research
FND: an evolutionary perspective
A short piece exploring an evolutionary perspective, specifically survival responses, to FND.
These are not new ideas, but thank you to Akiriho Nishi for suggesting a short, standalone article to encourage wider debate
academic.oup.com/emph/article...
A short piece exploring an evolutionary perspective, specifically survival responses, to FND.
These are not new ideas, but thank you to Akiriho Nishi for suggesting a short, standalone article to encourage wider debate
academic.oup.com/emph/article...
Functional neurological disorder: an evolutionary perspective
Functional neurological disorder (FND) is among the commonest disorders in neurological practice with an estimated prevalence of 80–140 per 100 000 individ
academic.oup.com
January 5, 2026 at 9:10 PM
FND: an evolutionary perspective
A short piece exploring an evolutionary perspective, specifically survival responses, to FND.
These are not new ideas, but thank you to Akiriho Nishi for suggesting a short, standalone article to encourage wider debate
academic.oup.com/emph/article...
A short piece exploring an evolutionary perspective, specifically survival responses, to FND.
These are not new ideas, but thank you to Akiriho Nishi for suggesting a short, standalone article to encourage wider debate
academic.oup.com/emph/article...
Reposted by ME/CFS research
1) This year, there were reports of 7 autopsies of ME/CFS patients, showing a dramatic reduction in CRH-producing neurons. This info was shared at the IACFS/ME conference, but the results still haven’t been published yet.
Similar findings have been found in type 1 narcolepsy.
Similar findings have been found in type 1 narcolepsy.
December 29, 2025 at 4:05 PM
1) This year, there were reports of 7 autopsies of ME/CFS patients, showing a dramatic reduction in CRH-producing neurons. This info was shared at the IACFS/ME conference, but the results still haven’t been published yet.
Similar findings have been found in type 1 narcolepsy.
Similar findings have been found in type 1 narcolepsy.
Reposted by ME/CFS research
1) The graph below gives an overview of treatments targeting autoantibodies in Long Covid and ME/CFS.
Efgartigimod = Vygart
Rovunaptabin = BC007
The authors conclude that "to date, no AAbs have been conclusively proven to be pathogenic in PCS or ME/CFS."
Efgartigimod = Vygart
Rovunaptabin = BC007
The authors conclude that "to date, no AAbs have been conclusively proven to be pathogenic in PCS or ME/CFS."
December 27, 2025 at 9:01 AM
1) The graph below gives an overview of treatments targeting autoantibodies in Long Covid and ME/CFS.
Efgartigimod = Vygart
Rovunaptabin = BC007
The authors conclude that "to date, no AAbs have been conclusively proven to be pathogenic in PCS or ME/CFS."
Efgartigimod = Vygart
Rovunaptabin = BC007
The authors conclude that "to date, no AAbs have been conclusively proven to be pathogenic in PCS or ME/CFS."
Reposted by ME/CFS research
1) Elizabeth Worthey's group published their findings on rare gene mutations in ME/CFS patients. Unfortunately, the evidence seems a bit underwhelming.
Only 31 individuals were screened and it's unclear if the mutations found are truly pathogenic.
Only 31 individuals were screened and it's unclear if the mutations found are truly pathogenic.
December 26, 2025 at 4:31 PM
1) Elizabeth Worthey's group published their findings on rare gene mutations in ME/CFS patients. Unfortunately, the evidence seems a bit underwhelming.
Only 31 individuals were screened and it's unclear if the mutations found are truly pathogenic.
Only 31 individuals were screened and it's unclear if the mutations found are truly pathogenic.
Reposted by ME/CFS research
December 12, 2025 at 4:29 PM
Reposted by ME/CFS research
1) Dr. Jarred Younger has registered his trial of Low Dose Naltrexone, which will start next year.
It uses a remote design so that people can participate from anywhere in the United States. Participants must be between the ages of 8 and 65 and meet ME-ICC criteria.
It uses a remote design so that people can participate from anywhere in the United States. Participants must be between the ages of 8 and 65 and meet ME-ICC criteria.
December 21, 2025 at 9:05 AM
1) Dr. Jarred Younger has registered his trial of Low Dose Naltrexone, which will start next year.
It uses a remote design so that people can participate from anywhere in the United States. Participants must be between the ages of 8 and 65 and meet ME-ICC criteria.
It uses a remote design so that people can participate from anywhere in the United States. Participants must be between the ages of 8 and 65 and meet ME-ICC criteria.
Reposted by ME/CFS research
Reminder, #MEcfs researchers: all consented data from @decodemestudy.bsky.social is available to researchers, including individual-level genotypes and symptom questionnaire responses
institute-genetics-cancer.ed.ac.uk/decodeme-the...
Summary stats & questionnaires available: osf.io/rgqs3/files/...
institute-genetics-cancer.ed.ac.uk/decodeme-the...
Summary stats & questionnaires available: osf.io/rgqs3/files/...
Researcher Access | DecodeME : The world's largest ME/CFS study | Institute of Genetics and Cancer
To accelerate research towards possible diagnostic tests and treatments for ME/CFS, DecodeME has built the world’s largest data set on ME/CFS, as a managed access resource for future research projects...
institute-genetics-cancer.ed.ac.uk
December 17, 2025 at 8:43 AM
Reminder, #MEcfs researchers: all consented data from @decodemestudy.bsky.social is available to researchers, including individual-level genotypes and symptom questionnaire responses
institute-genetics-cancer.ed.ac.uk/decodeme-the...
Summary stats & questionnaires available: osf.io/rgqs3/files/...
institute-genetics-cancer.ed.ac.uk/decodeme-the...
Summary stats & questionnaires available: osf.io/rgqs3/files/...
Reposted by ME/CFS research
1) Oliver Sacks, the neurologist known for his detailed case studies, seems to have fabricated and lied in many of his publications.
This includes famous books such as 'The Man Who Mistook His Wife for a Hat' and 'Awakenings' on patients with encephalitis lethargica.
This includes famous books such as 'The Man Who Mistook His Wife for a Hat' and 'Awakenings' on patients with encephalitis lethargica.
December 13, 2025 at 8:50 AM
1) Oliver Sacks, the neurologist known for his detailed case studies, seems to have fabricated and lied in many of his publications.
This includes famous books such as 'The Man Who Mistook His Wife for a Hat' and 'Awakenings' on patients with encephalitis lethargica.
This includes famous books such as 'The Man Who Mistook His Wife for a Hat' and 'Awakenings' on patients with encephalitis lethargica.
Reposted by ME/CFS research
Bit disappointed in this superficial review by the group of Warren Tate in what seems to be a predatory journal.
Looks like we are not the only ones with that assessment, see comments on S4ME:
www.s4me.info/thread...
Looks like we are not the only ones with that assessment, see comments on S4ME:
www.s4me.info/thread...
December 11, 2025 at 6:12 PM
Bit disappointed in this superficial review by the group of Warren Tate in what seems to be a predatory journal.
Looks like we are not the only ones with that assessment, see comments on S4ME:
www.s4me.info/thread...
Looks like we are not the only ones with that assessment, see comments on S4ME:
www.s4me.info/thread...
Reposted by ME/CFS research
1) Iwasaki's group has published a historical review of post-infectious syndromes.
Infections are traditionally viewed as having two outcomes: you either die or fully recover. But there are reports of post-acute sequelae after multiple infections, not just after COVID-19...
Infections are traditionally viewed as having two outcomes: you either die or fully recover. But there are reports of post-acute sequelae after multiple infections, not just after COVID-19...
December 9, 2025 at 8:46 AM
1) Iwasaki's group has published a historical review of post-infectious syndromes.
Infections are traditionally viewed as having two outcomes: you either die or fully recover. But there are reports of post-acute sequelae after multiple infections, not just after COVID-19...
Infections are traditionally viewed as having two outcomes: you either die or fully recover. But there are reports of post-acute sequelae after multiple infections, not just after COVID-19...
Reposted by ME/CFS research
Excited to share our new paper in @eclinicalmed.bsky.social:
www.thelancet.com/journals/ecl...
In this retrospective cohort study, we examined 147,595 individuals with FND. We investigated the prevalence of adverse life events nd psychosocial stressors, and how these relate to FND presentations.
www.thelancet.com/journals/ecl...
In this retrospective cohort study, we examined 147,595 individuals with FND. We investigated the prevalence of adverse life events nd psychosocial stressors, and how these relate to FND presentations.
Adverse life events and psychosocial stressors in functional neurological disorder: a retrospective cohort and case–control study using a large international electronic health record database
A record of adversities was at least 2·5 times more common in FND than in migraine,
and about 1·5 times more common than in GAD, varying by stressor type. Psychosocial
stressors were particularly comm...
www.thelancet.com
December 7, 2025 at 9:17 PM
Excited to share our new paper in @eclinicalmed.bsky.social:
www.thelancet.com/journals/ecl...
In this retrospective cohort study, we examined 147,595 individuals with FND. We investigated the prevalence of adverse life events nd psychosocial stressors, and how these relate to FND presentations.
www.thelancet.com/journals/ecl...
In this retrospective cohort study, we examined 147,595 individuals with FND. We investigated the prevalence of adverse life events nd psychosocial stressors, and how these relate to FND presentations.
Reposted by ME/CFS research
Dr. Chris Armstrong, the Director of OMF’s Melbourne ME/CFS Collaboration, and his team recently published a paper on their work looking at which genes were most impactful to metabolites in #MECFS and which were most impactful in controls.
👉Read more: ow.ly/ast150XG0rz.
👉Read more: ow.ly/ast150XG0rz.
December 8, 2025 at 10:11 PM
Dr. Chris Armstrong, the Director of OMF’s Melbourne ME/CFS Collaboration, and his team recently published a paper on their work looking at which genes were most impactful to metabolites in #MECFS and which were most impactful in controls.
👉Read more: ow.ly/ast150XG0rz.
👉Read more: ow.ly/ast150XG0rz.
Reposted by ME/CFS research
1) A randomized trial from Boston shows that nicotinamide riboside supplementation (2000 mg/day) probably doesn't improve Long Covid symptoms such as fatigue or cognition.
It increased NAD+ levels substantially (as intended), but there was no similar improvement in symptoms.
It increased NAD+ levels substantially (as intended), but there was no similar improvement in symptoms.
December 8, 2025 at 9:14 AM
1) A randomized trial from Boston shows that nicotinamide riboside supplementation (2000 mg/day) probably doesn't improve Long Covid symptoms such as fatigue or cognition.
It increased NAD+ levels substantially (as intended), but there was no similar improvement in symptoms.
It increased NAD+ levels substantially (as intended), but there was no similar improvement in symptoms.
Reposted by ME/CFS research
1) 🧬 New results from the LOCOME project. It applied the combinatorial analytics of PrecisionLife on data from DecodeME.
The 259 genes that were most associated with ME/CFS pointed to "neurological dysregulation, inflammation, cellular stress responses, and calcium signaling"
The 259 genes that were most associated with ME/CFS pointed to "neurological dysregulation, inflammation, cellular stress responses, and calcium signaling"
December 5, 2025 at 8:45 AM
1) 🧬 New results from the LOCOME project. It applied the combinatorial analytics of PrecisionLife on data from DecodeME.
The 259 genes that were most associated with ME/CFS pointed to "neurological dysregulation, inflammation, cellular stress responses, and calcium signaling"
The 259 genes that were most associated with ME/CFS pointed to "neurological dysregulation, inflammation, cellular stress responses, and calcium signaling"
Reposted by ME/CFS research
1) Prof. Ronald Davis gave a hopeful message during the last OMF’s Directors' talk.
He said that the few ME/CFS patients who have been cured seem totally normal, so it appears that the disease does not cause degenerative damage to the body...
He said that the few ME/CFS patients who have been cured seem totally normal, so it appears that the disease does not cause degenerative damage to the body...
December 4, 2025 at 8:15 AM
1) Prof. Ronald Davis gave a hopeful message during the last OMF’s Directors' talk.
He said that the few ME/CFS patients who have been cured seem totally normal, so it appears that the disease does not cause degenerative damage to the body...
He said that the few ME/CFS patients who have been cured seem totally normal, so it appears that the disease does not cause degenerative damage to the body...
Reposted by ME/CFS research
Physiological response is an involuntary, automatic, internal process that is stimulated by something like stress or infection. Symptoms are how a person experiences those internal changes in a clinically observable way. In #MECFS research, it’s important to monitor both.
December 3, 2025 at 5:43 PM
Physiological response is an involuntary, automatic, internal process that is stimulated by something like stress or infection. Symptoms are how a person experiences those internal changes in a clinically observable way. In #MECFS research, it’s important to monitor both.
Ron Davis: "One very important thing is that if the patients that have been cured , they are totally normal. So this disease does not appear to cause damage to the body as some diseases might like a heart attack or a stroke... youtu.be/H_GUUtxZD78?...
The Intersections of OMF’s Research Portfolio
YouTube video by Open Medicine Foundation - OMF
youtu.be
December 3, 2025 at 2:22 AM
Ron Davis: "One very important thing is that if the patients that have been cured , they are totally normal. So this disease does not appear to cause damage to the body as some diseases might like a heart attack or a stroke... youtu.be/H_GUUtxZD78?...
Reposted by ME/CFS research
1) 🇸🇪 A database study from Sweden reports that patients with a registered Long Covid had higher rates of depression and anxiety in 2019 (before Sars-Cov-2) than controls.
There are, however, several possible explanations for these findings.
There are, however, several possible explanations for these findings.
November 29, 2025 at 10:53 AM
1) 🇸🇪 A database study from Sweden reports that patients with a registered Long Covid had higher rates of depression and anxiety in 2019 (before Sars-Cov-2) than controls.
There are, however, several possible explanations for these findings.
There are, however, several possible explanations for these findings.
Reposted by ME/CFS research
People with #MECFS and #longcovid need hope, information, and support. People need help from people who understand these conditions, like Raelan Agle www.youtube.com/watch?v=zvGk...
Infectious Disease Professor: How I Recovered from Long Covid | Dr. Paul Garner
YouTube video by Raelan Agle
www.youtube.com
November 26, 2025 at 9:35 PM
People with #MECFS and #longcovid need hope, information, and support. People need help from people who understand these conditions, like Raelan Agle www.youtube.com/watch?v=zvGk...
Cognitive behavioural therapy for the treatment of chronic fatigue syndrome in adults – a meta-analysis www.frontiersin.org/journals/psy...
Frontiers | Cognitive behavioural therapy for the treatment of chronic fatigue syndrome in adults – a meta-analysis
The treatment efficacy of Cognitive Behavioural Therapy (CBT) for chronic fatigue syndrome (CFS) remains controversial. The purpose of this meta-analysis was...
www.frontiersin.org
November 20, 2025 at 4:37 PM
Cognitive behavioural therapy for the treatment of chronic fatigue syndrome in adults – a meta-analysis www.frontiersin.org/journals/psy...
Reposted by ME/CFS research
1) Had a look at this paper on 'The clinical relevance of Mast Cell Activation in ME/CFS'.
Unfortunately, it's almost fully based on self-reported data and questionnaires.
There are still almost no studies that looked deeper into MCAS in ME/CFS using proper biological tests.
Unfortunately, it's almost fully based on self-reported data and questionnaires.
There are still almost no studies that looked deeper into MCAS in ME/CFS using proper biological tests.
November 13, 2025 at 8:55 AM
1) Had a look at this paper on 'The clinical relevance of Mast Cell Activation in ME/CFS'.
Unfortunately, it's almost fully based on self-reported data and questionnaires.
There are still almost no studies that looked deeper into MCAS in ME/CFS using proper biological tests.
Unfortunately, it's almost fully based on self-reported data and questionnaires.
There are still almost no studies that looked deeper into MCAS in ME/CFS using proper biological tests.
Reposted by ME/CFS research
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).