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
Wondering when the disability community is going to wake up about these folks.
It should have been a red flag when they tried to use the FND community as a punching bag to make themselves look like upstanding empirical scientists.
I called out Putrino at the time + I was right
It should have been a red flag when they tried to use the FND community as a punching bag to make themselves look like upstanding empirical scientists.
I called out Putrino at the time + I was right
Conspiracy theorists Amy Proal and David Putrino are conducting unethical experiments at a Mt. Sinai quack clinic funded by crank billionaires Steven and Alexandra Cohen.
And RFK Jr’s HHS is co-opting their quack manual for “Lyme disease, Long COVID, vaccine injury”, and other alleged conditions.
And RFK Jr’s HHS is co-opting their quack manual for “Lyme disease, Long COVID, vaccine injury”, and other alleged conditions.
February 14, 2026 at 8:58 PM
Wondering when the disability community is going to wake up about these folks.
It should have been a red flag when they tried to use the FND community as a punching bag to make themselves look like upstanding empirical scientists.
I called out Putrino at the time + I was right
It should have been a red flag when they tried to use the FND community as a punching bag to make themselves look like upstanding empirical scientists.
I called out Putrino at the time + I was right
Reposted by ME/CFS research
1) 🧵Been looking at cytokines; small signalling molecules of the immune system.
Conclusion: lots of ME/CFS studies on this but inconsistent results. There doesn't seem to be an inflammatory cytokine response (in the blood).
Most consistently elevated cytokine was TGF-beta.
Conclusion: lots of ME/CFS studies on this but inconsistent results. There doesn't seem to be an inflammatory cytokine response (in the blood).
Most consistently elevated cytokine was TGF-beta.
February 14, 2026 at 12:40 PM
1) 🧵Been looking at cytokines; small signalling molecules of the immune system.
Conclusion: lots of ME/CFS studies on this but inconsistent results. There doesn't seem to be an inflammatory cytokine response (in the blood).
Most consistently elevated cytokine was TGF-beta.
Conclusion: lots of ME/CFS studies on this but inconsistent results. There doesn't seem to be an inflammatory cytokine response (in the blood).
Most consistently elevated cytokine was TGF-beta.
Reposted by ME/CFS research
The Mestinon/LDN Life Improvement Trial (LIFT) is seeking eligible research participants now within 300 miles of Brigham and Women’s Hospital at Harvard Medical School.
Learn more about the LIFT: https://clinicaltrials.gov/study/NCT06366724
Learn more about the LIFT: https://clinicaltrials.gov/study/NCT06366724
February 13, 2026 at 2:42 PM
The Mestinon/LDN Life Improvement Trial (LIFT) is seeking eligible research participants now within 300 miles of Brigham and Women’s Hospital at Harvard Medical School.
Learn more about the LIFT: https://clinicaltrials.gov/study/NCT06366724
Learn more about the LIFT: https://clinicaltrials.gov/study/NCT06366724
Reposted by ME/CFS research
1) Dr. Felipe Correa da Silva shared more info about the first 10 brain autopsies from the Netherlands.
In this new thread, we made a brief summary of his presentation.
In this new thread, we made a brief summary of his presentation.
February 7, 2026 at 1:54 PM
1) Dr. Felipe Correa da Silva shared more info about the first 10 brain autopsies from the Netherlands.
In this new thread, we made a brief summary of his presentation.
In this new thread, we made a brief summary of his presentation.
Reposted by ME/CFS research
Calling pwME in the UK- please fill out this survey if you haven't yet! I'll be using data from this survey to better understand at what ages people develop ME and from what types of triggers. Thanks to everyone who has taken part so far!
🚨 One week left to contribute to ME research and fill in our 2025/26 Big Survey!
If you've got ME or ME-like symptoms as part of long Covid, we want to hear from you 🙏
🔗 Take part, and find out more: www.actionforme.org.uk/research-cam...
Thank you!
If you've got ME or ME-like symptoms as part of long Covid, we want to hear from you 🙏
🔗 Take part, and find out more: www.actionforme.org.uk/research-cam...
Thank you!
January 22, 2026 at 12:33 PM
Calling pwME in the UK- please fill out this survey if you haven't yet! I'll be using data from this survey to better understand at what ages people develop ME and from what types of triggers. Thanks to everyone who has taken part so far!
Reposted by ME/CFS research
1/3 Now published: We performed a large-scale replication testing the effect of serum from 67 pwME and 53 healthy donors on muscle cell mitochondria, revealing no significant differences. This suggests earlier results may not be true for people with ME in general. doi.org/10.1371/jour...
Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis/chronic fatigue syndrome or control serum
Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome is a disease of uncertain aetiology that affects up to 400,000 individuals in the UK. Exposure of cultured cells to the sera of people with ME...
doi.org
February 4, 2026 at 10:21 AM
1/3 Now published: We performed a large-scale replication testing the effect of serum from 67 pwME and 53 healthy donors on muscle cell mitochondria, revealing no significant differences. This suggests earlier results may not be true for people with ME in general. doi.org/10.1371/jour...
Reposted by ME/CFS research
Now published in the journal PLOS One:
Ryback et al. Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis/chronic fatigue syndrome or control serum.
journals.plos.org/plosone/arti...
Ryback et al. Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis/chronic fatigue syndrome or control serum.
journals.plos.org/plosone/arti...
February 5, 2026 at 10:18 AM
Now published in the journal PLOS One:
Ryback et al. Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis/chronic fatigue syndrome or control serum.
journals.plos.org/plosone/arti...
Ryback et al. Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis/chronic fatigue syndrome or control serum.
journals.plos.org/plosone/arti...
Reposted by ME/CFS research
Not for #MEcfs but for rheumatoid arthritis: Successful clinical trial of vagus nerve-mediated neuroimmune modulation: www.nature.com/articles/s41....
Question asked by Eric Topol and Kevin Tracey is: Can this be successfully applied to other diseases? bsky.app/profile/eric...
Question asked by Eric Topol and Kevin Tracey is: Can this be successfully applied to other diseases? bsky.app/profile/eric...
February 2, 2026 at 9:46 AM
Not for #MEcfs but for rheumatoid arthritis: Successful clinical trial of vagus nerve-mediated neuroimmune modulation: www.nature.com/articles/s41....
Question asked by Eric Topol and Kevin Tracey is: Can this be successfully applied to other diseases? bsky.app/profile/eric...
Question asked by Eric Topol and Kevin Tracey is: Can this be successfully applied to other diseases? bsky.app/profile/eric...
Reposted by ME/CFS research
1) A new publication in Nature found that approximately 10% of people in the UK biobank have DNA of the Epstein-Barr virus in their blood and that this is associated with various autoimmune (lupus, rheumatoid arthritis) and respiratory diseases such as COPD.
January 29, 2026 at 6:09 PM
1) A new publication in Nature found that approximately 10% of people in the UK biobank have DNA of the Epstein-Barr virus in their blood and that this is associated with various autoimmune (lupus, rheumatoid arthritis) and respiratory diseases such as COPD.
Psychological symptoms predict long coronavirus disease 2019: a prospective analysis from the Women’s Health Initiative journals.lww.com/menopausejou...
journals.lww.com
January 28, 2026 at 6:43 PM
Psychological symptoms predict long coronavirus disease 2019: a prospective analysis from the Women’s Health Initiative journals.lww.com/menopausejou...
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.