ME/CFS Science
@mecfsscience.org
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) The team of Andreas Goebel was the first to transfer autoantibodies of fibromyalgia patients to mice (similar studies later followed in Long Covid).
In this paper, they tested rozanolixizumas: a drug that lowers circulating antibody levels.
A brief summary of the results 👇
In this paper, they tested rozanolixizumas: a drug that lowers circulating antibody levels.
A brief summary of the results 👇
September 20, 2026 at 7:28 AM
1) The team of Andreas Goebel was the first to transfer autoantibodies of fibromyalgia patients to mice (similar studies later followed in Long Covid).
In this paper, they tested rozanolixizumas: a drug that lowers circulating antibody levels.
A brief summary of the results 👇
In this paper, they tested rozanolixizumas: a drug that lowers circulating antibody levels.
A brief summary of the results 👇
1) A genetic analysis of the UK Biobank found 7 ME/CFS hits that were replicated in another cohort such as the All of Us cohort.
One signal matched with expression of the gene CLYBL in the putamen brain region.
But there are many caveats. None replicated in DecodeME.
One signal matched with expression of the gene CLYBL in the putamen brain region.
But there are many caveats. None replicated in DecodeME.
September 18, 2026 at 7:33 AM
1) A genetic analysis of the UK Biobank found 7 ME/CFS hits that were replicated in another cohort such as the All of Us cohort.
One signal matched with expression of the gene CLYBL in the putamen brain region.
But there are many caveats. None replicated in DecodeME.
One signal matched with expression of the gene CLYBL in the putamen brain region.
But there are many caveats. None replicated in DecodeME.
1) The pharma company BioVie announced the results of the phase 2 trial of their drug Bezisterim for Long Covid.
Although the primary analysis showed no significant effect, an analysis in subgroups with a great symptom burden suggested an improvement.
A brief breakdown 👇
Although the primary analysis showed no significant effect, an analysis in subgroups with a great symptom burden suggested an improvement.
A brief breakdown 👇
September 17, 2026 at 8:29 AM
1) The pharma company BioVie announced the results of the phase 2 trial of their drug Bezisterim for Long Covid.
Although the primary analysis showed no significant effect, an analysis in subgroups with a great symptom burden suggested an improvement.
A brief breakdown 👇
Although the primary analysis showed no significant effect, an analysis in subgroups with a great symptom burden suggested an improvement.
A brief breakdown 👇
Reposted by ME/CFS Science
I spot British, US, New Zealand, Latvian and Australian collaborators in there - as well as the Polish.
8 ) A bit more about the document: it's a consensus statement by 19 multidisciplinary experts. Each had a minimum of 10 years of clinical or research experience in ME/CFS.
Looks like it was set up by the Polish team of Pawel Zalewski.
Looks like it was set up by the Polish team of Pawel Zalewski.
September 14, 2026 at 5:04 PM
I spot British, US, New Zealand, Latvian and Australian collaborators in there - as well as the Polish.
1) There's a new consensus statement on ME/CFS diagnosis and assessment by 19 experts.
The table below shows some of the objective tests they recommend for various symptom domains including a standing test, polysomnography, actigraphy, CPET, NK cytotoxicity, etc.
The table below shows some of the objective tests they recommend for various symptom domains including a standing test, polysomnography, actigraphy, CPET, NK cytotoxicity, etc.
September 14, 2026 at 7:26 AM
1) There's a new consensus statement on ME/CFS diagnosis and assessment by 19 experts.
The table below shows some of the objective tests they recommend for various symptom domains including a standing test, polysomnography, actigraphy, CPET, NK cytotoxicity, etc.
The table below shows some of the objective tests they recommend for various symptom domains including a standing test, polysomnography, actigraphy, CPET, NK cytotoxicity, etc.
1) This study found that ME/CFS patients often have too low blood and low red blood cell volume.
But surprisingly, these measures weren't related to orthostatic intolerance as measured by a lean test. This suggest that hypovolemia isn't the main reason for orthostatic problems.
But surprisingly, these measures weren't related to orthostatic intolerance as measured by a lean test. This suggest that hypovolemia isn't the main reason for orthostatic problems.
September 11, 2026 at 9:20 AM
1) This study found that ME/CFS patients often have too low blood and low red blood cell volume.
But surprisingly, these measures weren't related to orthostatic intolerance as measured by a lean test. This suggest that hypovolemia isn't the main reason for orthostatic problems.
But surprisingly, these measures weren't related to orthostatic intolerance as measured by a lean test. This suggest that hypovolemia isn't the main reason for orthostatic problems.
1) I looked at the big genetic study on fibromyalgia (Kerrebijn et al. 2026) and how well it correlated with findings for ME/CFS in DecodeME.
Using European samples, the correlation was quite big: rg = 0.75.
A brief discussion of the implications 👇
Using European samples, the correlation was quite big: rg = 0.75.
A brief discussion of the implications 👇
September 5, 2026 at 7:51 AM
1) I looked at the big genetic study on fibromyalgia (Kerrebijn et al. 2026) and how well it correlated with findings for ME/CFS in DecodeME.
Using European samples, the correlation was quite big: rg = 0.75.
A brief discussion of the implications 👇
Using European samples, the correlation was quite big: rg = 0.75.
A brief discussion of the implications 👇
1) A new paper on ME/CFS is getting media attention: it's about how the chromosomes containing our DNA are folded. These 3D structures can influence the expression of genes.
Unfortunately, I don't think this study warrants all the attention...
Unfortunately, I don't think this study warrants all the attention...
September 4, 2026 at 7:59 AM
1) A new paper on ME/CFS is getting media attention: it's about how the chromosomes containing our DNA are folded. These 3D structures can influence the expression of genes.
Unfortunately, I don't think this study warrants all the attention...
Unfortunately, I don't think this study warrants all the attention...
1) Dr. Edzard Ernst, who often writes critically about alternative medicine and pseudoscience, has written a blog about this Lightning process trial for Long Covid.
1) 🇨🇦 Disappointing to see that McMaster University is sponsoring a trial of the Lightning Process for Long Covid.
The study isn't blinded and only uses subjective outcomes such as fatigue questionnaires so its results will be biased by expectations and therapist instructions
The study isn't blinded and only uses subjective outcomes such as fatigue questionnaires so its results will be biased by expectations and therapist instructions
September 2, 2026 at 12:26 PM
1) Dr. Edzard Ernst, who often writes critically about alternative medicine and pseudoscience, has written a blog about this Lightning process trial for Long Covid.
1) Many patients with orthostatic intolerance do not meet the require heart rate increase of POTS criteria.
This new expert consensus paper argues that that this group deserves more recognition, including a separate diagnosis and ICD-code.
This new expert consensus paper argues that that this group deserves more recognition, including a separate diagnosis and ICD-code.
September 1, 2026 at 7:52 AM
1) Many patients with orthostatic intolerance do not meet the require heart rate increase of POTS criteria.
This new expert consensus paper argues that that this group deserves more recognition, including a separate diagnosis and ICD-code.
This new expert consensus paper argues that that this group deserves more recognition, including a separate diagnosis and ICD-code.
1) Very sad news that Jo Cambridge has passed away.
She was a Prof. in rheumatology who pioneered B-cell depletion therapy in autoimmune diseases together with Jonathan Edwards. But she also did several useful studies on ME/CFS and was much loved in the community.
She was a Prof. in rheumatology who pioneered B-cell depletion therapy in autoimmune diseases together with Jonathan Edwards. But she also did several useful studies on ME/CFS and was much loved in the community.
August 31, 2026 at 8:22 AM
1) Very sad news that Jo Cambridge has passed away.
She was a Prof. in rheumatology who pioneered B-cell depletion therapy in autoimmune diseases together with Jonathan Edwards. But she also did several useful studies on ME/CFS and was much loved in the community.
She was a Prof. in rheumatology who pioneered B-cell depletion therapy in autoimmune diseases together with Jonathan Edwards. But she also did several useful studies on ME/CFS and was much loved in the community.
Reposted by ME/CFS Science
Working in partnership with Jonathan Edwards at UCL, Jo Cambridge’s research revolutionised understanding and treatment of rheumatoid arthritis. Like Jonathan, she later turned her attention to investigating the mechanisms of ME/CFS. Her death is a great loss.
Jo Cambridge obituary
Other lives: Professor whose research led to immunotherapies that have improved the lives of countless individuals
www.theguardian.com
August 30, 2026 at 12:17 PM
Working in partnership with Jonathan Edwards at UCL, Jo Cambridge’s research revolutionised understanding and treatment of rheumatoid arthritis. Like Jonathan, she later turned her attention to investigating the mechanisms of ME/CFS. Her death is a great loss.
1) 🇳🇱 In the Netherlands, ME/CFS patient and advocate Anil Van Der Zee was appointed Knight in the Order of Orange-Nassau.
It's an recognition of his outstanding contribution to society, a very high honour.
It's an recognition of his outstanding contribution to society, a very high honour.
August 30, 2026 at 8:09 AM
1) 🇳🇱 In the Netherlands, ME/CFS patient and advocate Anil Van Der Zee was appointed Knight in the Order of Orange-Nassau.
It's an recognition of his outstanding contribution to society, a very high honour.
It's an recognition of his outstanding contribution to society, a very high honour.
I've changed one plot (the Majeed 1996 data) to better show that the difference isn't due to outliers.
This study also combined male and females, which might explain the bigger overlap between groups compared to other studies.
This study also combined male and females, which might explain the bigger overlap between groups compared to other studies.
August 29, 2026 at 10:39 AM
I've changed one plot (the Majeed 1996 data) to better show that the difference isn't due to outliers.
This study also combined male and females, which might explain the bigger overlap between groups compared to other studies.
This study also combined male and females, which might explain the bigger overlap between groups compared to other studies.
Reposted by ME/CFS Science
2nd Young EMERG International Workshop Series
𝗩𝗮𝗹𝗲𝗻𝗰𝗶𝗮 | 𝟳–𝟴 𝗢𝗰𝘁𝗼𝗯𝗲𝗿 𝟮𝟬𝟮𝟲
Scientific & personal development, explore leading collaborations + PI Speed Dating.
𝟵 𝗢𝗰𝘁𝗼𝗯𝗲𝗿 is the Day of the Valencian Community, making it perfect to enjoy the city!
❗✈️ Contact YE before booking to access the discount.
𝗩𝗮𝗹𝗲𝗻𝗰𝗶𝗮 | 𝟳–𝟴 𝗢𝗰𝘁𝗼𝗯𝗲𝗿 𝟮𝟬𝟮𝟲
Scientific & personal development, explore leading collaborations + PI Speed Dating.
𝟵 𝗢𝗰𝘁𝗼𝗯𝗲𝗿 is the Day of the Valencian Community, making it perfect to enjoy the city!
❗✈️ Contact YE before booking to access the discount.
August 21, 2026 at 4:20 PM
2nd Young EMERG International Workshop Series
𝗩𝗮𝗹𝗲𝗻𝗰𝗶𝗮 | 𝟳–𝟴 𝗢𝗰𝘁𝗼𝗯𝗲𝗿 𝟮𝟬𝟮𝟲
Scientific & personal development, explore leading collaborations + PI Speed Dating.
𝟵 𝗢𝗰𝘁𝗼𝗯𝗲𝗿 is the Day of the Valencian Community, making it perfect to enjoy the city!
❗✈️ Contact YE before booking to access the discount.
𝗩𝗮𝗹𝗲𝗻𝗰𝗶𝗮 | 𝟳–𝟴 𝗢𝗰𝘁𝗼𝗯𝗲𝗿 𝟮𝟬𝟮𝟲
Scientific & personal development, explore leading collaborations + PI Speed Dating.
𝟵 𝗢𝗰𝘁𝗼𝗯𝗲𝗿 is the Day of the Valencian Community, making it perfect to enjoy the city!
❗✈️ Contact YE before booking to access the discount.
1) New blog article: the hormone prolactin rises much higher in ME/CFS patients after taking buspirone than in controls.
This is one of the most replicated findings in the field but for years this line of research was abandoned.
This is one of the most replicated findings in the field but for years this line of research was abandoned.
Increased prolactin response to buspirone - ME/CFS Science
Multiple studies have found an increased response of the hormone prolactin to the drug buspironeContinue readingIncreased prolactin response to buspirone
mecfsscience.org
August 29, 2026 at 7:47 AM
1) New blog article: the hormone prolactin rises much higher in ME/CFS patients after taking buspirone than in controls.
This is one of the most replicated findings in the field but for years this line of research was abandoned.
This is one of the most replicated findings in the field but for years this line of research was abandoned.
The ISLC-PAIS Conference in Amsterdam started today.
Will not be able to follow unfortunately but look forward to hearing more about this presentation by Martin Broberg from Finland. It says they did a genetic meta-analysis with more than 46,000 ME/CFS patients worldwide.
Will not be able to follow unfortunately but look forward to hearing more about this presentation by Martin Broberg from Finland. It says they did a genetic meta-analysis with more than 46,000 ME/CFS patients worldwide.
August 26, 2026 at 2:00 PM
The ISLC-PAIS Conference in Amsterdam started today.
Will not be able to follow unfortunately but look forward to hearing more about this presentation by Martin Broberg from Finland. It says they did a genetic meta-analysis with more than 46,000 ME/CFS patients worldwide.
Will not be able to follow unfortunately but look forward to hearing more about this presentation by Martin Broberg from Finland. It says they did a genetic meta-analysis with more than 46,000 ME/CFS patients worldwide.
1) A short but powerful blog by Anil van der Zee:
"Not an Advocate. Not Your Silver Lining Porn. Just Desperation." 👇
"Not an Advocate. Not Your Silver Lining Porn. Just Desperation." 👇
Not an Advocate. Not Your Silver Lining Porn. Just Desperation. - Anil van der Zee
I'm not a patient advocate. I'm not an activist. I'm just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life. While raising awareness for ME also keeps me busy, I
anilvanderzee.com
August 24, 2026 at 8:31 AM
1) A short but powerful blog by Anil van der Zee:
"Not an Advocate. Not Your Silver Lining Porn. Just Desperation." 👇
"Not an Advocate. Not Your Silver Lining Porn. Just Desperation." 👇
1) The Science for ME forum has published a factsheet on the "Management of severe and very severe ME/CFS." It was written by Professor Emeritus Jonathan Edwards and various forum members.
Looks like a useful reference for ME/CFS patients and their carers.
A brief summary 👇
Looks like a useful reference for ME/CFS patients and their carers.
A brief summary 👇
August 19, 2026 at 7:18 AM
1) The Science for ME forum has published a factsheet on the "Management of severe and very severe ME/CFS." It was written by Professor Emeritus Jonathan Edwards and various forum members.
Looks like a useful reference for ME/CFS patients and their carers.
A brief summary 👇
Looks like a useful reference for ME/CFS patients and their carers.
A brief summary 👇
There's more info about the study in this presentation by Professor Rikke Olsen at the Invest in ME conference:
www.youtube.com/watch?v=vXhs...
www.youtube.com/watch?v=vXhs...
August 17, 2026 at 12:46 PM
There's more info about the study in this presentation by Professor Rikke Olsen at the Invest in ME conference:
www.youtube.com/watch?v=vXhs...
www.youtube.com/watch?v=vXhs...
1) 🇩🇰 Looks like there's a new ME/CFS trial in Denmark called 'REenergizeME'.
It will test intermittent hypoxiahyperoxia treatment (IHHT) in 104 female patients selected using the international consensus criteria.
It includes FUNCAP and several objective outcomes.
It will test intermittent hypoxiahyperoxia treatment (IHHT) in 104 female patients selected using the international consensus criteria.
It includes FUNCAP and several objective outcomes.
August 17, 2026 at 7:41 AM
1) 🇩🇰 Looks like there's a new ME/CFS trial in Denmark called 'REenergizeME'.
It will test intermittent hypoxiahyperoxia treatment (IHHT) in 104 female patients selected using the international consensus criteria.
It includes FUNCAP and several objective outcomes.
It will test intermittent hypoxiahyperoxia treatment (IHHT) in 104 female patients selected using the international consensus criteria.
It includes FUNCAP and several objective outcomes.
1) Many of the genes linked to ME/CFS in DecodeME point to neural synapses.
We therefore did an analysis using SynGo, a large database of synaptic genes. Experts in the field grouped these genes into multiple categories based on their location or biological function.
We therefore did an analysis using SynGo, a large database of synaptic genes. Experts in the field grouped these genes into multiple categories based on their location or biological function.
August 16, 2026 at 7:32 AM
1) Many of the genes linked to ME/CFS in DecodeME point to neural synapses.
We therefore did an analysis using SynGo, a large database of synaptic genes. Experts in the field grouped these genes into multiple categories based on their location or biological function.
We therefore did an analysis using SynGo, a large database of synaptic genes. Experts in the field grouped these genes into multiple categories based on their location or biological function.
Reposted by ME/CFS Science
1) The WE&ME Foundation has created an 'Emerging Leader Award'.
It recognises outstanding early-career researchers who combine scientific excellence with meaningful engagement in ME/CFS or related post-infectious diseases.
The application deadline is 15th October 2026.
It recognises outstanding early-career researchers who combine scientific excellence with meaningful engagement in ME/CFS or related post-infectious diseases.
The application deadline is 15th October 2026.
August 15, 2026 at 6:31 PM
For people interested in details of this study on brain scans and hypoxia in ME/CFS.
One of the authors wrote a very thoughtful reply to comments about the study on the S4ME forum. Read the discussion here:
s4me.info/threads/expe...
One of the authors wrote a very thoughtful reply to comments about the study on the S4ME forum. Read the discussion here:
s4me.info/threads/expe...
August 15, 2026 at 5:21 PM
For people interested in details of this study on brain scans and hypoxia in ME/CFS.
One of the authors wrote a very thoughtful reply to comments about the study on the S4ME forum. Read the discussion here:
s4me.info/threads/expe...
One of the authors wrote a very thoughtful reply to comments about the study on the S4ME forum. Read the discussion here:
s4me.info/threads/expe...
1) The WE&ME Foundation has created an 'Emerging Leader Award'.
It recognises outstanding early-career researchers who combine scientific excellence with meaningful engagement in ME/CFS or related post-infectious diseases.
The application deadline is 15th October 2026.
It recognises outstanding early-career researchers who combine scientific excellence with meaningful engagement in ME/CFS or related post-infectious diseases.
The application deadline is 15th October 2026.
August 15, 2026 at 7:28 AM
1) The WE&ME Foundation has created an 'Emerging Leader Award'.
It recognises outstanding early-career researchers who combine scientific excellence with meaningful engagement in ME/CFS or related post-infectious diseases.
The application deadline is 15th October 2026.
It recognises outstanding early-career researchers who combine scientific excellence with meaningful engagement in ME/CFS or related post-infectious diseases.
The application deadline is 15th October 2026.