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Профиль

ME/CFS Science

Профиль Vively

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

4,1 тыс. подписчиков161 подписок3,7 тыс. публикаций
ME/CFS Science

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

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

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

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

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

⏱️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

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.

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ME/CFS Science

"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

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.

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ME/CFS Science

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

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.

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ME/CFS Science

🇳🇱 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

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...

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ME/CFS Science

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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