ME/CFS Science
@mecfsskeptic.bsky.social
In-depth analysis of research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Formerly known as ME/CFS Skeptic.
https://mecfsscience.org/
https://mecfsscience.org/
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.
1) Moving paper by young ME/CFS researcher Katherine Cheston. She was aware of the great disability it causes but "encountering the reality of this suffering first-hand was still shocking and deeply saddening."
She gives examples of patients who do not get appropriate care.
She gives examples of patients who do not get appropriate care.
December 24, 2025 at 9:15 AM
1) Moving paper by young ME/CFS researcher Katherine Cheston. She was aware of the great disability it causes but "encountering the reality of this suffering first-hand was still shocking and deeply saddening."
She gives examples of patients who do not get appropriate care.
She gives examples of patients who do not get appropriate care.
Reposted by ME/CFS Science
Great idea. When I was first sick and had no idea that anyone else on earth had this, people would say, “You don’t feel like exercising, but if you do, you feel better.” I would say “No! I want to exercise, I try, and I end up in bed for weeks.” Big difference. PEM hadn’t been defined yet.
December 23, 2025 at 6:08 PM
Great idea. When I was first sick and had no idea that anyone else on earth had this, people would say, “You don’t feel like exercising, but if you do, you feel better.” I would say “No! I want to exercise, I try, and I end up in bed for weeks.” Big difference. PEM hadn’t been defined yet.
1) "Any study that includes people who experience PEM must measure it..."
Members of the Patient Led Research Collaborative teamed up with expert clinicians to give recommendations on outcome measures for Long Covid trials.
Members of the Patient Led Research Collaborative teamed up with expert clinicians to give recommendations on outcome measures for Long Covid trials.
December 23, 2025 at 5:26 PM
1) "Any study that includes people who experience PEM must measure it..."
Members of the Patient Led Research Collaborative teamed up with expert clinicians to give recommendations on outcome measures for Long Covid trials.
Members of the Patient Led Research Collaborative teamed up with expert clinicians to give recommendations on outcome measures for Long Covid trials.
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.
While European countries such as the Netherlands and Germany are increasing their investments in ME/CFS research, the US appears stuck in an opposite trend
NIH funding for ME/CFS keeps falling 👇
NIH funding for ME/CFS keeps falling 👇
1) New blog post: NIH funding for ME/CFS keeps falling.
Last year, we calculated that the NIH funded 23 ME/CFS projects, totalling an investment of $10.1 million. In 2025, however, this amount decreased to $7.4 million for 18 projects.
Last year, we calculated that the NIH funded 23 ME/CFS projects, totalling an investment of $10.1 million. In 2025, however, this amount decreased to $7.4 million for 18 projects.
December 20, 2025 at 4:23 PM
While European countries such as the Netherlands and Germany are increasing their investments in ME/CFS research, the US appears stuck in an opposite trend
NIH funding for ME/CFS keeps falling 👇
NIH funding for ME/CFS keeps falling 👇
1) New blog post: NIH funding for ME/CFS keeps falling.
Last year, we calculated that the NIH funded 23 ME/CFS projects, totalling an investment of $10.1 million. In 2025, however, this amount decreased to $7.4 million for 18 projects.
Last year, we calculated that the NIH funded 23 ME/CFS projects, totalling an investment of $10.1 million. In 2025, however, this amount decreased to $7.4 million for 18 projects.
December 20, 2025 at 4:16 PM
1) New blog post: NIH funding for ME/CFS keeps falling.
Last year, we calculated that the NIH funded 23 ME/CFS projects, totalling an investment of $10.1 million. In 2025, however, this amount decreased to $7.4 million for 18 projects.
Last year, we calculated that the NIH funded 23 ME/CFS projects, totalling an investment of $10.1 million. In 2025, however, this amount decreased to $7.4 million for 18 projects.
1) This study by CDC researchers investigated dysregulation of the alternative complement pathway in ME/CFS. Unfortunately, it was based on the Georgia cohort and selected using the Reeves criteria.
These captured a much wider group than just ME/CFS (2.54% of the population).
These captured a much wider group than just ME/CFS (2.54% of the population).
December 19, 2025 at 5:59 PM
1) This study by CDC researchers investigated dysregulation of the alternative complement pathway in ME/CFS. Unfortunately, it was based on the Georgia cohort and selected using the Reeves criteria.
These captured a much wider group than just ME/CFS (2.54% of the population).
These captured a much wider group than just ME/CFS (2.54% of the population).
1) Someone pointed out that this study also found increased levels of fibronectin-1 in the plasma of ME/CFS patients. A 2023 Prusty paper reported this as well.
Below is the graph with data from the Australian study
Below is the graph with data from the Australian study
December 19, 2025 at 12:24 PM
1) Someone pointed out that this study also found increased levels of fibronectin-1 in the plasma of ME/CFS patients. A 2023 Prusty paper reported this as well.
Below is the graph with data from the Australian study
Below is the graph with data from the Australian study
1) 🇦🇺 This new study tested the kynurenine pathway in the plasma of 61 ME/CFS patients and 61 controls.
There were no differences in tryptophan or kynurenine, but further downstream, patients had increased levels of 3HK and lower levels of picolinic acid and quinolinic acid.
There were no differences in tryptophan or kynurenine, but further downstream, patients had increased levels of 3HK and lower levels of picolinic acid and quinolinic acid.
December 19, 2025 at 9:16 AM
1) 🇦🇺 This new study tested the kynurenine pathway in the plasma of 61 ME/CFS patients and 61 controls.
There were no differences in tryptophan or kynurenine, but further downstream, patients had increased levels of 3HK and lower levels of picolinic acid and quinolinic acid.
There were no differences in tryptophan or kynurenine, but further downstream, patients had increased levels of 3HK and lower levels of picolinic acid and quinolinic acid.
1) This factsheet for medical professionals received a lot of response and discussion.
Some people felt it was dismissive of several findings in the ME/CFS field, so I want to give some more background and context.
Some people felt it was dismissive of several findings in the ME/CFS field, so I want to give some more background and context.
1) New factsheet: ME/CFS - information for medical professionals (6 pages).
Written by Prof. Emeritus Jonathon Edwards and members of the Science for ME forum. A valuable text, useful to bookmark. A couple of quotes from key paragraphs 👇
Written by Prof. Emeritus Jonathon Edwards and members of the Science for ME forum. A valuable text, useful to bookmark. A couple of quotes from key paragraphs 👇
December 18, 2025 at 12:09 PM
1) This factsheet for medical professionals received a lot of response and discussion.
Some people felt it was dismissive of several findings in the ME/CFS field, so I want to give some more background and context.
Some people felt it was dismissive of several findings in the ME/CFS field, so I want to give some more background and context.
Reposted by ME/CFS Science
2) This will be the sixth year that we're making these yearly overviews of ME/CFS research.
You can reread our previous write-ups on our website:
You can reread our previous write-ups on our website:
2024: looking back on a year of ME/CFS research - ME/CFS Science
As 2024 comes to a close, it is time to review the most interesting studiesContinue reading2024: looking back on a year of ME/CFS research
mecfsscience.org
December 17, 2025 at 8:13 PM
1) Prof. Scheibenbogen announced that the biopharma company Sanofi is willing to support a drug trial on ME/CFS led by the Charité.
Sanofi also expressed an interest in gaining a better understanding of the disease and its mechanisms.
Sanofi also expressed an interest in gaining a better understanding of the disease and its mechanisms.
December 17, 2025 at 3:02 PM
1) Prof. Scheibenbogen announced that the biopharma company Sanofi is willing to support a drug trial on ME/CFS led by the Charité.
Sanofi also expressed an interest in gaining a better understanding of the disease and its mechanisms.
Sanofi also expressed an interest in gaining a better understanding of the disease and its mechanisms.
Looks like Nancy Klimas is doing an NIH study on "Microbiome targeted oral butyrate therapy" in Gulf War multisymptom illness
More info:
reporter.nih.gov/search/SRYAY...
More info:
reporter.nih.gov/search/SRYAY...
December 17, 2025 at 10:04 AM
Looks like Nancy Klimas is doing an NIH study on "Microbiome targeted oral butyrate therapy" in Gulf War multisymptom illness
More info:
reporter.nih.gov/search/SRYAY...
More info:
reporter.nih.gov/search/SRYAY...
1) We're busy with our yearly overview of the most interesting ME/CFS studies of 2025.
We got the big ones like DecodeME, PrecisionLife, BiomapAI, the daratumumab pilot, Lipkin's study on heightened innate immunity, etc.
Any ME/CFS papers that we certainly shouldn't miss?
We got the big ones like DecodeME, PrecisionLife, BiomapAI, the daratumumab pilot, Lipkin's study on heightened innate immunity, etc.
Any ME/CFS papers that we certainly shouldn't miss?
December 17, 2025 at 9:03 AM
1) We're busy with our yearly overview of the most interesting ME/CFS studies of 2025.
We got the big ones like DecodeME, PrecisionLife, BiomapAI, the daratumumab pilot, Lipkin's study on heightened innate immunity, etc.
Any ME/CFS papers that we certainly shouldn't miss?
We got the big ones like DecodeME, PrecisionLife, BiomapAI, the daratumumab pilot, Lipkin's study on heightened innate immunity, etc.
Any ME/CFS papers that we certainly shouldn't miss?
Reposted by ME/CFS Science
This study is really promising, and although it has gotten underway it has not yet raised the full amount it needs and could really do with government support.
🇳🇴 Patients from Norway have created a petition to encourage the government to provide funding for the Daratumumab study and to strengthen future biomedical research efforts in ME CFS.
You can sign the petition here:
You can sign the petition here:
Sign the Petition
Call for Funding a New Clinical Study on Daratumumab for ME/CFS
www.change.org
December 16, 2025 at 12:47 PM
This study is really promising, and although it has gotten underway it has not yet raised the full amount it needs and could really do with government support.
Reposted by ME/CFS Science
"The biggest problem may be resisting pressures to be more active, from health professionals, family, peers and the need to maintain self-esteem."
The last part of that sentence gave me pause. This is a valuable read. #LongCOVID #MECFS
The last part of that sentence gave me pause. This is a valuable read. #LongCOVID #MECFS
1) New factsheet: ME/CFS - information for medical professionals (6 pages).
Written by Prof. Emeritus Jonathon Edwards and members of the Science for ME forum. A valuable text, useful to bookmark. A couple of quotes from key paragraphs 👇
Written by Prof. Emeritus Jonathon Edwards and members of the Science for ME forum. A valuable text, useful to bookmark. A couple of quotes from key paragraphs 👇
December 15, 2025 at 11:45 PM
"The biggest problem may be resisting pressures to be more active, from health professionals, family, peers and the need to maintain self-esteem."
The last part of that sentence gave me pause. This is a valuable read. #LongCOVID #MECFS
The last part of that sentence gave me pause. This is a valuable read. #LongCOVID #MECFS
1) This Chinese study measured the gut microbiome in 40 ME/CFS patients and 40 controls. Consistent with previous studies, they found reduced microbiota diversity and lower levels of butyrate.
Butyrate is important for maintaining the integrity of our gut barrier.
Butyrate is important for maintaining the integrity of our gut barrier.
December 16, 2025 at 10:19 AM
1) This Chinese study measured the gut microbiome in 40 ME/CFS patients and 40 controls. Consistent with previous studies, they found reduced microbiota diversity and lower levels of butyrate.
Butyrate is important for maintaining the integrity of our gut barrier.
Butyrate is important for maintaining the integrity of our gut barrier.
1) New factsheet: ME/CFS - information for medical professionals (6 pages).
Written by Prof. Emeritus Jonathon Edwards and members of the Science for ME forum. A valuable text, useful to bookmark. A couple of quotes from key paragraphs 👇
Written by Prof. Emeritus Jonathon Edwards and members of the Science for ME forum. A valuable text, useful to bookmark. A couple of quotes from key paragraphs 👇
December 15, 2025 at 8:47 AM
1) New factsheet: ME/CFS - information for medical professionals (6 pages).
Written by Prof. Emeritus Jonathon Edwards and members of the Science for ME forum. A valuable text, useful to bookmark. A couple of quotes from key paragraphs 👇
Written by Prof. Emeritus Jonathon Edwards and members of the Science for ME forum. A valuable text, useful to bookmark. A couple of quotes from key paragraphs 👇
1) This interesting short paper showed that the immune cells of Long Covid patients had a stronger response to viral mimics than controls. They produced more type I interferon.
December 14, 2025 at 10:55 AM
1) This interesting short paper showed that the immune cells of Long Covid patients had a stronger response to viral mimics than controls. They produced more type I interferon.
1) Nature had a brief news article about the German investment in research on ME/CFS and Long Covid.
Some quotes from scientists:
“This is really major funding,” says Rafael Mikolajczyk, an epidemiologist at Martin Luther University Halle-Wittenberg in Germany.
Some quotes from scientists:
“This is really major funding,” says Rafael Mikolajczyk, an epidemiologist at Martin Luther University Halle-Wittenberg in Germany.
December 13, 2025 at 4:18 PM
1) Nature had a brief news article about the German investment in research on ME/CFS and Long Covid.
Some quotes from scientists:
“This is really major funding,” says Rafael Mikolajczyk, an epidemiologist at Martin Luther University Halle-Wittenberg in Germany.
Some quotes from scientists:
“This is really major funding,” says Rafael Mikolajczyk, an epidemiologist at Martin Luther University Halle-Wittenberg in Germany.
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.
1) Missed this PrecisionLife paper from earlier this year. They looked at people who had high genetic risk factors for ME/CFS but did not develop the disease. They looked at what made this group unique and which genes might help to protect against ME/CFS.
December 12, 2025 at 8:45 AM
1) Missed this PrecisionLife paper from earlier this year. They looked at people who had high genetic risk factors for ME/CFS but did not develop the disease. They looked at what made this group unique and which genes might help to protect against ME/CFS.
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...
1) The ME Association in the UK announced that it will invest £1.1m into the Rosetta Stone study.
The study will compare the immune profile of ME/CFS and Long Covid patients, with 250 patients in each group.
The study will compare the immune profile of ME/CFS and Long Covid patients, with 250 patients in each group.
December 11, 2025 at 8:50 AM
1) The ME Association in the UK announced that it will invest £1.1m into the Rosetta Stone study.
The study will compare the immune profile of ME/CFS and Long Covid patients, with 250 patients in each group.
The study will compare the immune profile of ME/CFS and Long Covid patients, with 250 patients in each group.