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/

1) 🔬 New funding opportunity for ME/CFS research! Solve is now accepting submissions for their Ramsay Research Grant Program! Funding is between $50.000 - $150.000 depending on the category. The deadline to apply is Friday, November 13, 2026.

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1) "... the medical aspects of the illness are on the whole better understood by sick people than by their doctors..." In this new paper, philosopher Chloé De Canson details how the ME/CFS community shares and produces scientific knowledge.

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1) An initiative worth sharing: The Severe & Very Severe ME Research Registry. It's a website that provides access to research for severely and severely affected ME/CFS patients from Germany, Austria and Switzerland (DACH region).

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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 👇

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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.

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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 👇

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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.

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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.

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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 👇

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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...

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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.

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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.

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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.

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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.

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ME/CFS Science@mecfsscience.org · last mo.

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.

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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.

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

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.

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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 👇

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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.

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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.

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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.

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I’ve been told for years that it’s legally and ethically impossible to share medical RCT data. In 2024, the BMJ made sharing anonymised data mandatory, and now lots* of folk do it. Interesting how the barriers evaporated like that, isn’t it? *not everyone, compliance problems exist.

Availability of clinical trial individual patient data in the BMJ before and after adoption of a stringent data-sharing policy, compared with recent rates at other major medical journals

Background In 2024, the BMJ updated its data-sharing policy for clinical trials, requiring open deposit of deidentified individual participant data (IPD) before publication. We considered whether data...

medrxiv.org