Simon McGrath

From Beth Dobbin’s letter: “To get the welfare bill down, I believe you need to fund research into this spiralling illness [ME/CFS] and help us all get our lives back." Frustrating to think how little has changed since I made this point in a letter to The Times 20 years ago:

Still remember the MS specialist saying, "prepare yourself" because #MECFS signs and symptoms look so much like MS that even the MS expert was sure! "Nope; you have the wrong lesions... you may have a kind of 'pre-MS'," was her conclusion. 25% of MS diagnoses are misdiagnoses. How many are ME?

Beth Dobbin ran for GB at the Tokyo Olympics in 2022 and is now in bed with ME/CFS bed for 22 hours/day. She says as an athlete, she's never been disbelieved giving her a small platform which she wants to use, even though it could affect her into 2027. Thank you, Beth www.bbc.co.uk/sport/athlet...

The inaugural PRIME International Symposium brought together researchers, clinicians, industry representatives, charities and people with lived experience for discussion, collaboration and learning focused on the future of ME research. Read our full roundup: www.actionforme.org.uk/global-exper...

Amongst other things, Gemma was the lead author of the analysis of NHS data that gave us a prevalence rate of 0.6%/400,000 people in the UK. This is the most robust estimate we have to date, and is now widely quoted. Congrats to Dr Samms.

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.

Exciting to see the official launch of the Genetic Epidemiology of ME/CFS (GEM) International Consortium at this two-day symposium. At IGC, important research into ME/CFS is being conducted by @cgatist.bsky.social, @aryback.bsky.social and Joshua Dibble who are all involved in this meeting.

New results. Eleven associations! Focuses on EXD3 Val540Met. (NB: unpublished results that need replication.) Genetic overlap with neuronal, immune, endocrine and sleep traits. EXD3 missense variant in exonuclease catalytic cleft. Immune function? #Prime26

The 2026 PRIME symposium kicks off with reflections from Kelly McLellan on the importance of Patient and Public Involvement in ME/CFS research. #Prime26 #pwME #mecfs

“Blistering New Monbiot Column on ME/CFS Mistreatment, Neglect” By David Tuller virology.ws/2026/09/26/t... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...

George will be coming on my show this weekend to discuss this very important article.

📢 New ME/CFS genetics preprint from the Beentjes/ Khamseh/ Ponting groups NB: Not DecodeME We discover 7 genetic associations to ME/CFS that are independently replicated in UK Biobank and/or All of Us ME/CFS case/control status required multiple lines of evidence www.medrxiv.org/content/10.6...

#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @cgatist.bsky.social

Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.

Fabulous to see Alem @alemmatthees.bsky.social here, well worth a follow if you know who he is

“It’s not a priority, despite having a major destructive influence on our society,” says Professor Chris Ponting @cgatist.bsky.social from IGC. Read this article about how researchers are working out to help hundreds of millions of people with long-term conditions as a result of an infection.

PRIME International Symposium a two-day hybrid event exploring the latest developments in ME/CFS research Links www.actionforme.org.uk/register-for... www.actionforme.org.uk/wp-content/u... www.tickettailor.com/events/unive... Screenshot from latest Science for ME update #MEcfs #PwME #CFS

10 years today, after a David vs Goliath FOI legal battle that damaged Alem Mathees, White et al were forced to release data from PACETrial (that cost UK taxpayers £5M) showing graded exercise therapy & CBT didn’t lead to an increased recovery rate for CFS. Please remind the world #MEcfs #PwME #CFS

“Trial By Error: Newly Knighted Anil van der Zee @anilvanderzee.bsky.social Discusses his Royal Honor” By David Tuller @davetuller1.bsky.social virology.ws/2026/09/06/t... #MEcfs #PwME #SevereME

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 👇

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...

Anthropic boasts its new Claude #Fable model will "stick to the brief", which explains a lot about the current models. Seriously, that counts as a cutting-edge AI feature?

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.

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.

A great thread about the remarkable Anil Van Der Zee

4) He also makes movies from his bed, for example 'Doctors as Patients' which has been viewed more than 60.000 times on YouTube. In this film, doctors with post-infectious syndromes explain how becoming ill changed their lives and their view on medicine.

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.

I'm sorry to hear of the loss of Prof Jo Cambridge who brought her talents to bear on #ME research.

AI certainly saves a lot of time. Whether it saves more time than it wastes, I'm not so sure.

1) A short but powerful blog by Anil van der Zee: "Not an Advocate. Not Your Silver Lining Porn. Just Desperation." 👇

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.

What is the evidence that psychosocial factors are direct aetiological factors in chronic diseases? This question, asked by George Davey Smith in 2005, and a follow-up comment from Simon Wessely, snagged my attention. Blog via @simonmcg.bsky.social's site. mecfsresearchreview.me/2026/08/11/o...

1) The research team of Leonard Jason has published the DSQ-PEM-2, a new short questionnaire to assess post-exertional malaise (PEM). It includes extra questions about multiple PEM triggers, delayed onset, and prolonged recovery. But there are also some issues...

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.

Cross-definition GWAS of IBS in 2.8 million individuals reveals cardiometabolic & triglyceride-linked mechanisms gut.bmj.com/content/earl... "we identify 35 risk loci & demonstrate a consistent polygenic architecture across different case definitions” #irritablebowelsyndrome #IBS 1/

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.

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) 🇬🇧 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.

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) 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...

Scientists built a solar reactor that eats plastic bottles and burps out clean hydrogen at scale Cambridge Uni made the device with simple materials using a paint sprayer—offering a possible dual fix for plastic pollution and dirty hydrogen production www.anthropocenemagazine.org/2026/07/scie...

A brilliant clip from a BBC weather forecast and presenter with ME/CFS

Comparing the UK heatwaves of June 1976 and June 2026... Daytime maximum & night minimum temperatures were much hotter in 2026. Details: maxima over 21st-30th June in both years. Uses provisional 2026 HadUK-Grid data from Met Office NCIC. Note the difference scale is larger for night minimums.

Yesterday afternoon, UK Biobank wrote to all its researchers saying that they are “Planning for a phased re-opening of access to the UK Biobank Research Analysis Platform from September”. This further delay is frustrating and costly to our project. We’ll complete our analyses asap thereafter.