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ME/CFS Science

@mecfsscience.org
4.3K followers 162 following 3.9K posts

In-depth analysis of research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Formerly known as ME/CFS Skeptic. mecfsscience.org

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ME/CFS Science @mecfsscience.org · 29/09/2026
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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ME/CFS Science @mecfsscience.org · 20/09/2026
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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ME/CFS Science @mecfsscience.org · 18/09/2026
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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ME/CFS Science @mecfsscience.org · 17/09/2026
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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Tony Britton @thewestonmale.bsky.social · 14/09/2026
I spot British, US, New Zealand, Latvian and Australian collaborators in there - as well as the Polish.
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ME/CFS Science @mecfsscience.org · 14/09/2026
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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ME/CFS Science @mecfsscience.org · 11/09/2026
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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ME/CFS Science @mecfsscience.org · 05/09/2026
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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ME/CFS Science @mecfsscience.org · 04/09/2026
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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ME/CFS Science @mecfsscience.org · 02/09/2026
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.
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ME/CFS Science @mecfsscience.org · 01/09/2026
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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ME/CFS Science @mecfsscience.org · 31/08/2026
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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Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · 30/08/2026
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.
theguardian.com
Jo Cambridge obituary
Other lives: Professor whose research led to immunotherapies that have improved the lives of countless individuals
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ME/CFS Science @mecfsscience.org · 30/08/2026
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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ME/CFS Science @mecfsscience.org · 29/08/2026
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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youngEMERG @youngemerg.bsky.social · 21/08/2026
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.
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ME/CFS Science @mecfsscience.org · 29/08/2026
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.
mecfsscience.org
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
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ME/CFS Science @mecfsscience.org · 26/08/2026
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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ME/CFS Science @mecfsscience.org · 24/08/2026
1) A short but powerful blog by Anil van der Zee: "Not an Advocate. Not Your Silver Lining Porn. Just Desperation." 👇
anilvanderzee.com
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
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ME/CFS Science @mecfsscience.org · 19/08/2026
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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ME/CFS Science @mecfsscience.org · 17/08/2026
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...
youtube.com
IIMEC18 Professor Rikke Olsen
YouTube video by InvestinME Research
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ME/CFS Science @mecfsscience.org · 17/08/2026
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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ME/CFS Science @mecfsscience.org · 16/08/2026
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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Tom Kindlon @tomkindlon.bsky.social · 15/08/2026
I hope someone nominates @danielmissailidis.bsky.social 🙏 #MEcfs #PwME
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ME/CFS Science @mecfsscience.org · 15/08/2026
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...
s4me.info
Preprint - Experimental hypoxia to probe neuro-metabolic and vascular dysregulation in ME/CFS: a multimodal proof-of-concept MRI study, 2026, Bader et al.
Now, when exposed to the simulated hypoxic conditions, the Lac/tCr ratio increases less than healthy controls, this could mean there is a lesser capacity for additional compensatory glycolysis to be g...
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ME/CFS Science @mecfsscience.org · 15/08/2026
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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Science for ME (S4ME) @s4me.info · 14/08/2026
New Fact Sheet from the Science for ME (S4ME) Forum: "Management of severe and very severe ME/CFS" s4me.info/threads/fact... This is the fourth fact sheet published by the S4ME forum. I'll post links to the other three in the replies. 1/4 #MEcfs #SevereME #PwME #S4ME
s4me.info
Fact Sheet 4: Management of severe and very severe ME/CFS
Fact Sheet 4: Management of severe and very severe ME/CFS Published August 2026 Link to pdf: https://s4me.info/docs/Management of severe and very severe MECFS.pdf Discussion thread: Fact sheet #4 - M...
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Ian Hussey @ianhussey.mmmdata.io · 14/08/2026
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.
medrxiv.org
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...
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ME/CFS Science @mecfsscience.org · 14/08/2026
1) 🇦🇹 Interesting study that tested brain blood flow and metabolites under experimentally induced hypoxia (they gave ME/CFS patients less oxygen while lying under the MRI scanner). The idea is that this might reveal brain differences during a stressor.
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ME/CFS Science @mecfsscience.org · 13/08/2026
1) Unfortunately, another negative result for immunoadsorption for Long Covid. A small trial that focused only on patients with elevated levels of antibodies against β1/β2-adrenergic and/or M3/M4-muscarinic acetylcholine receptors found no improvement in objective outcomes.
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ME/CFS Science @mecfsscience.org · 12/08/2026
1) 🇺🇸 A new paper in Nature shows that viral reactivation is common in COVID-19, associated with severity and not primarily a consequence of immunosuppression. The association with Long Covid, however, was far from clear.
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ME/CFS Science @mecfsscience.org · 10/08/2026
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
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ME/CFS Science @mecfsscience.org · 08/08/2026
1) 🇩🇪 In the CoCo-Fakt study at Cologne and Ausberg, patients with Long Covid reported doing more and more intense physical activity than controls who had COVID-19 but no long term symptoms. The researchers expected the opposite.
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ME/CFS Science @mecfsscience.org · 07/08/2026
1) 🇪🇸 A Spanish study measured light exposure using the ActTrust wearable device in 100 ME/CFS patients and 56 healthy controls. Patients had lower average light exposure, reduced amplitude, and greater fragmentation of the light–dark cycle.
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ME/CFS Science @mecfsscience.org · 06/08/2026
1) 🇺🇸 A new NIH study argues that the fatigue experienced by ME/CFS patients likely has a central (in the brain) rather than a peripheral (in muscle) origin. They put patients in an MRI scanner and recorded electromyography during grip strength exercises. A brief breakdown.
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Chris Ponting @cgatist.bsky.social · 06/08/2026
Today is the 1-year anniversary of the #DecodeME genetics preprint. It was an emotional day for many including everyone in the team that delivered the project #pwME #MEcfs @actionforme.bsky.social institute-genetics-cancer.ed.ac.uk/sites/defaul...
institute-genetics-cancer.ed.ac.uk
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ME/CFS Science @mecfsscience.org · 04/08/2026
1) Had a closer look at this randomised trial on pacing from earlier this year. It tested an app, warning system, and wearable device to help Long Covid patients pace, but unfortunately, it didn't have an effect on post-exertional malaise (PEM) and other symptoms.
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ME/CFS Science @mecfsscience.org · 03/08/2026
I like to read about past medical breakthroughs: it gives me hope that, one day, the same will happen to ME/CFS. In 1989, scientists found the major gene defect that causes cystic fibrosis, as reported in this article in Science. Francis Collins was one of its discoverers.
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ME/CFS Science @mecfsscience.org · 03/08/2026
1) Just watched this lecture by Prof. Leonard Jason. His team in Chicago has been developing questionnaires and assessment tools for ME/CFS for several decades. In this talk, he gives an overview of his main findings and also comments on FUNCAP.
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ME/CFS Science @mecfsscience.org · 02/08/2026
1) 🇩🇪 There's more info about the trial on Aripiprazole (Abilify) that will take place in the Charité. It will enrol 138 PAIS patients using a crossover design so everyone will be on 1 mg of Abilify for a period of 8 weeks. Primary outcome is the Chalder Fatigue Scale.
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ME/CFS Science @mecfsscience.org · 01/08/2026
1) 🇪🇺 Shoutout to Mike Harley, aka Marathon Mike. He has been running marathons in every European country to raise funds for ME/CFS research. Along his trips, he interviews ME/CFS patients to learn more about the situation in their country.
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ME/CFS Science @mecfsscience.org · 31/07/2026
⏱️REMINDER: This ME/CFS research call is currently open to applications. It has a budget of € 120,000-180,000 per project, provided by the WE&ME Foundation. The first stage only requires a short proposals (ca. 4 pages). The deadline is 25 August.
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Naomi Whittingham @naomiwhitt.bsky.social · 30/07/2026
I realised there was a part of chronic illness that I'd never actually written about. Not the grief or the isolation. But the experience of living inside a body that feels so unpredictable and unsafe. Now I’ve written it. I’d love to know if it resonates with you.
alifehidden.com
The Burden of Chronic Illness That I Rarely Talk About
Being ill is hard.  What an obvious thing to say – and yet how often it goes unspoken.  I’ve written about many aspects of life with long-term illness: from the grief of dreams shat…
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ME/CFS Science @mecfsscience.org · 30/07/2026
"There’s often a deep stoicism in those of us who have known lengthy illness: a quiet acceptance of bodily suffering that conceals its true burden. For our own survival, we’ve learnt to normalise feeling unwell. We measure our symptoms not against the healthy body, but against its worst potential."
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ME/CFS Science @mecfsscience.org · 30/07/2026
The English version of this paper on caring for people with severe ME/CFS is now available: link.springer.com/article/10.1... Summary in the thread below 👇
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Tom Kindlon @tomkindlon.bsky.social · 28/07/2026
ME/CFS Science @mecfsscience.org : Cell and tissue enrichment in ME/CFS mecfsscience.org/cell-and-tis... Screenshot from Science for ME weekly update #MEcfs #PwME #CFS #ME #MyalgicE
ME/CFS Science Cell and tissue enrichment in ME/CFS
Forum member ME/CFS Science Blog has written an article on cell and tissue enrichment. By matching DNA results with gene expression databases researchers can determine the tissues and cell types involved in various diseases. For ME/CFS, the results strongly point to neurons.
Article | Thread
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ME/CFS Science @mecfsscience.org · 29/07/2026
🇳🇱 This paper from Rob Wüst's group was published yesterday in Nature Communications. They found several differences between ME/CFS and LC patients and deconditioned participants who underwent 60 days of bed rest 👇
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ME/CFS Science @mecfsscience.org · 28/07/2026
1) 🇩🇪 The results of the PsyLoCo study have been published. It tested group psychotherapeutic treatment in 48 Long Covid patients. The results showed no significant effect on symptoms, anxiety or depression.
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ME/CFS Science @mecfsscience.org · 27/07/2026
1) 🇩🇪 There's now more info about the PIONEER study which will test inebilizumab (a drug that targets B-cells), in a subgroup of ME/CFS patients. It's a randomised trial at the Charité that aims to include 38 participants.
Screenshot of the trial registration for the PIONEER trial on inebilizumab
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Chris Ponting @cgatist.bsky.social · 24/07/2026
UK people with Long Covid or ME/CFS: please consider helping the HERITAGE project. They need to recruit 1,000 people who have not accessed an NHS specialist service within the last 3 years. heritage.leeds.ac.uk/join/
Are you someone with Long Covid or ME/CFS lasting at least 2 years? Are you not currently receiving specialist NHS Long Covid or ME/CFS case? Then consider joining the UK HERITAGE study by visiting the University of Leeds website https://heritage.leeds.ac.uk/join/ or call 0113 3924 734.
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