Robert Saunders (aka McMullen)

@roberthmcmullen.bsky.social

Author of "stranger and stranger”, letter writer, advocate and fundraiser for biomedical ME/CFS research.

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

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

1) Watched this presentation by Dr. Steve Gardner from PrecisionLife. Their genetic analysis suggests that ME/CFS is highly polygenic and heterogeneous. They are using their data to make drug repurposing trials more effective, for example on GLP-1 receptor agonists.

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1) There’s an interesting lead in the ME/CFS genetic data: the eccentric medium spiny neuron (eMSN), a cell type in the brain discovered only a couple of years ago. All based on preliminary findings, but the data looks rather interesting.

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“People with ME and ME-like symptoms have been neglected for decades and while this funding is very much welcomed, it is nowhere near enough to bring ME research on a par with other illnesses.” Sonya Chowdhury, CEO AfME 👏 www.thetimes.com/uk/healthcar... Witbout paywall: archive.ph/Czvwc

Landmark ME study will map patients’ DNA in mission to find cure

The government will provide £4.75 million in funding to British scientists who aim to create a test to reliably identify chronic fatigue syndrome

thetimes.com

Since 2013 I’ve raised £20,000+ for ME research charities. This year I’m raising money for Sequence ME & Long Covid as I think this is our best chance of understanding the causes and mechanisms of ME/CFS, which will lead to the development of effective treatments: www.justgiving.com/page/robafme

Rob’s birthday fundraiser for Sequence ME & Long Covid

Help Robert Saunders raise money to support Action for M.E.

justgiving.com

Robert Saunders (aka McMullen)@roberthmcmullen.bsky.social · 3mo ago

For my birthday on 3 May I’m raising money for Sequence ME & Long Covid via @actionforme.bsky.social: www.justgiving.com/page/robafme All donations gratefully received, however small or large. Thanks.

1) 🇪🇺 The controversial European project on Long Covid includes a randomized trial on amygdala retraining and online CBT. In a preliminary analysis, both fared no better than usual care.

Screenshot of the study protocol: "Effectiveness of mindfulness-based online therapy or internet-delivered cognitive behavioral therapy compared with treatment as usual among patients with persistent somatic symptoms: Protocol for a randomized controlled trial."

1/6 🚨 ME on the BBC We are delighted to have been selected for a BBC Lifeline Appeal - a unique opportunity to increase understanding of ME and share the voices of the ME community across national TV! #pwME ⬇️

Poster showing a video camera on a tripod with text “BBC Lifeline Appeal – Airing Sunday 26 April.” The Action for ME logo appears in the top right, and a Lifeline logo with two reaching hands is at the bottom.

Blog about the recent study finding evidence across Europe for ME/CFS peaking at two different ages, a v unusual feature. The peak ages of 1about 6 and late 30s is a unique combo even among diseases with two, and could be a clue to the biology of ME/CFS. mecfsresearchreview.me/2026/04/15/m...

ME/CFS onset had two peaks, which may be a clue to causes

A new study strengthens the findings that ME/CFS is a disease with a highly unusual feature. Analysis of survey data on patients across Europe found there are two peak ages for getting ME/CFS, arou…

mecfsresearchreview.me

1) 🔬🦠New article: we've made a comprehensive overview of the immune system in ME/CFS, analyzing major studies of the past 40 years. A longread with separate chapters on: - viral persistence - cytokines - neuroinflammation - antibodies - immune cells such as NK, B, and T cells