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.

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.

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.

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.

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.

⏱️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.

ME/CFS Science@mecfsscience.org · 2mo ago

1) The WE&ME Foundation has launched a major international call for ME/CFS research in collaboration with the Science for ME forum. It aims to fund 7 projects with a budget of €120,000-180,000 per project. The stage 1, short proposal, deadline is 25 August 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.

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…

alifehidden.com

"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."

Naomi Whittingham@naomiwhitt.bsky.social · 6d ago

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.

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 👇

ME/CFS Science@mecfsscience.org · 2mo ago

1) There is now also an paper on caring for patients with (very) severe ME/CFS. The guide describes how care should be adapted, from nutrition and personal hygiene to communication and dealing with energy limits and stress.

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

🇳🇱 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 👇

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

1) Dutch researchers compared muscle biopsies of ME/CFS and Long Covid patients to healthy participants who underwent 60 days of strict bed rest as part of a NASA study. A brief overview of how ME/CFS and LC differed from deconditioning...

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.

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.

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/

1) 🇪🇺 Report from the European ME Coalition (EMEC): Ten Members of the European Parliament have written to Research Commissioner Ekaterina Zaharieva calling for dedicated, long-term EU funding for ME/CFS research.

1) Pascal Arimont and nine other Members of the European Parliament have written a letter to Research Commissioner Ekaterina Zaharieva calling for dedicated, long-term support for ME/CFS Research. #MECFS #MyalgicE #HorizonEurope

1) We wrote a new article on cell and tissue analysis using genetic data. For ME/CFS, the results strongly point to neurons. One of the top hits is the medium spiny neuron, located in a region deep inside the brain called the striatum.

Cell and tissue enrichment in ME/CFS - ME/CFS Science

By matching DNA results with gene expression databases researchers can determine the tissues and cellContinue readingCell and tissue enrichment in ME/CFS

mecfsscience.org

How many times can these people do the same trial and get the same pathetic results? virology.ws/2026/07/18/t...

1) 🇩🇪 The German ME/CFS Research Foundation has supported 7 research projects with a total budget of € 2.4 million. It includes a treatment trial of tafasitamab, which targets B-cells, and a genetic study of families with multiple members affected by ME/CFS A brief overview

15 years after the Pace trial, CBT enthusiast still shoe no interest in a proper clinical trial. Even with the usual fatal flaws, only one of five primary outcomes sneaks into statistical significance. With correct corrections for multiple comparisons, which the authors fail apply, none do. A bust.

ME/CFS Science@mecfsscience.org · 3w ago

1) 🇩🇪 There's a new randomised trial of cognitive behavioural therapy (CBT) for Long Covid, from the Johannes Gutenberg University Mainz in Germany. It claims that CBT lowered fatigue but it has the usual fatal limitations that make the results unreliable.

1) 🇧🇪 A Long Covid study from Brussels tested if the 6MIST, a relatively simple exercise test, is a valid alternative to the 2-day cardiopulmonary exercise testing (CPET) that has been used to measure PEM. In brief, the answer was no.

1) 🇩🇪 There's a new randomised trial of cognitive behavioural therapy (CBT) for Long Covid, from the Johannes Gutenberg University Mainz in Germany. It claims that CBT lowered fatigue but it has the usual fatal limitations that make the results unreliable.

1) A new randomized trial in Long Covid patients tested Temelimab, a drug that targets a potentially pathogenic protein (HERV-W ENV) from endogenous retroviruses. Unfortunately, the results are pretty clear: Temelimab had no beneficial effect.

1) 🇮🇹 An Italian hospital showed reduced nerves in the gastric lining of Long Covid patients compared to controls. It was a preliminary study though, with only 12 patients and 8 controls.

1) 🇬🇧 The results of the big STIMULATE-ICP study are in. It tested three repurposed drugs in hundreds of Long Covid patients: - colchicine: an anti-inflammatory - famotidine and loratadine: antihistamines - rivaroxaban: an anticoagulant Sadly, all three had poor results.

Quick reminder that there's currently an important ME/CFS research call with a budget of € 120,000-180,000 per project. Organized by the WE&ME Foundation. The deadline is 25 August. More info 👇

ME/CFS Science@mecfsscience.org · 2mo ago

1) The WE&ME Foundation has launched a major international call for ME/CFS research in collaboration with the Science for ME forum. It aims to fund 7 projects with a budget of €120,000-180,000 per project. The stage 1, short proposal, deadline is 25 August 2026.

1) "SARS-CoV-2 antigens circulate in plasma up to one year after infection in a minority of individuals, regardless of whether they develop Long COVID or not, and become rarely detectable later on."

1) This paper used unsupervised machine learning to the largest ME/CFS cohort to date: the DecodeME cohort of 19,000 ME/CFS patients. The goal was to identify identify groups of patients with similar symptom profiles.

1) A notable trend in these positive developments is how many are taking place in 🇪🇺Europe instead of the 🇺🇸US. A major shift has taken place in just a couple of years.

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

1) An overview of positive developments in ME/CFS research 👇 The European Union awarded €7.5 to a ME/CFS consortium that will conduct multi-omics and test biomarkers in hundreds of patients. It will connect and harmonize five biobanks across the continent. bsky.app/profile/mecf...

“He was a doctor who ran marathons. Now, walking to the bathroom is harder than any marathon he ever ran. In this grade of severity ME is only invisible if people purposefully look away.” Evelien van den Brink calling for biomedical #MECFS research in European Parliament in 2019.