iiinova — where your digital self keeps evolving

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Institute of Genetics and Cancer @uoe-igc.bsky.social · 28/09/2026

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.

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Chris Ponting @cgatist.bsky.social · 28/09/2026

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 (NB: unpublished results that need replication.)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

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Chris Ponting @cgatist.bsky.social · 28/09/2026

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

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Tom Kindlon @tomkindlon.bsky.social · 26/09/2026

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

Trial By Error: Blistering New Monbiot Column on ME/CFS Mistreatment, Neglect
Leave a Comment / By David Tuller / 26 September 2026
By David Tuller, DrPH

George Monbiot, the British investigative journalist and longtime contributor to The Guardian, has written a corker of a column about the mistreatment and abuse of people with ME/CFS, including those with Long COVID. This newest piece follows two of Monbiot’s previous Guardian essays—in March, 2024, and October, 2024–that were equally blunt about the failures of the medical and academic establishments in this domain.

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George Monbiot @georgemonbiot.bsky.social · 24/09/2026

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...

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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Natasha Devon @natashadevon.bsky.social · 24/09/2026

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

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Chris Ponting @cgatist.bsky.social · 14/09/2026

📢 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...

ME/CFS cases (or controls) were defined using multiple lines of evidence in 2 independent UK Biobank cohorts, and 1 independent All of Us cohort. We needed to restrict genetic ancestry to Europeans to minimise the chance of spurious associations. Next, we used TarGene to estimate the effects of genetic variants on ME/CFS risk. Finally, we replicated 7 variants that were both significant in a Discovery GWAS, and in one of two Replication GWAS.

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George Monbiot @georgemonbiot.bsky.social · 21/09/2026

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.

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Simon McGrath @simonmcg.bsky.social · 18/09/2026

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

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Institute of Genetics and Cancer @uoe-igc.bsky.social · 03/09/2026

“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.

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Tom Kindlon @tomkindlon.bsky.social · 07/09/2026

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

PRIME International Symposium a two-day hybrid event exploring the latest developments in ME/CFS research.
9 am on 28 September to 2 pm on 29 September at the John McIntyre Conference Centre in Edinburgh, with online attendance also available.
"The PRIME Symposium will see the launch of the new International Genetic Epidemiology of ME/CFS Consortium, as well as provide a platform for Early Career Researchers and the Patient and Public Involvement Research Involvement Hub to present exciting new research and supporting activities."
Article | Preliminary programme | Registration | Thread

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Tom Kindlon @tomkindlon.bsky.social · 09/09/2026

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

Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT
Carolyn E Wilshire 1 , Tom Kindlon 2 , Robert Courtney 3 , Alem Matthees 4 , David Tuller 5 , Keith Geraghty 6 , Bruce Levin 7
Affiliations Expand

PMID: 29562932 PMCID: PMC5863477 DOI: 10.1186/s40359-018-0218-3

Abstract

Background: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. However, the reported analyses did not consistently follow the procedures set out in the published protocol, and it is unclear whether the conclusions are fully justified by the evidence.

Methods: Here, we present results based on the original protocol-specified procedures. Data from a recent Freedom of Information request enabled us to closely approximate these procedures. We also evaluate the conclusions from the trial as a whole.

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Tom Kindlon @tomkindlon.bsky.social · 08/09/2026

“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

Trial By Error: Newly Knighted Anil van der Zee Discusses his Royal Honor
4 Comments / By David Tuller / 6 September 2026
By David Tuller, DrPH

A few days ago, I posted a blog about how Anil van der Zee, a bedbound Dutch ME/CFS patient, had been awarded a royal honor in recognition of the many years he has pushed hard to correct misinformation, debunk bad research, organize educational events, and on and on. Amsterdam mayor Femke HalsemaIn presented the award to him in person in his darkened flat. In my blog, I posted a letter I had submitted in support of the community-based effort to obtain the royal honor for Anil. (Athough he is now formally a knight in the Order of Orange-Nassau, I was relieved to find out that we do not need to call him Sir Anil.)

I recently sent Anil a few questions about this well-deserved award. He offered a thoughtful, nuanced and clear-eyed view of what the award means, both to him and the larger community. Below is the interview, which has been lightly edited.

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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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Simon McGrath @simonmcg.bsky.social · 04/09/2026

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?

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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 · 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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Simon McGrath @simonmcg.bsky.social · 31/08/2026

A great thread about the remarkable Anil Van Der Zee

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ME/CFS Science @mecfsscience.org · 30/08/2026

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.

youtube.com

Doctors as Patients (with subtitles)

In this film, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before, not just in the Netherlands but possibly worldwide! They speak candidly about their experiences with illness, what th

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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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Simon McGrath @simonmcg.bsky.social · 30/08/2026

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

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Simon McGrath @simonmcg.bsky.social · 28/08/2026

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

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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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Chris Ponting @cgatist.bsky.social · 11/08/2026

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...

mecfsresearchreview.me

On BPS & disease causation: George Davey Smith’s cautionary tale

by Professor Chris Ponting A guide to the Biopsychosocial model recently put out by Long Covid Advocacy ultimately brought me to a 2005 book chapter, written by Professor George Davey Smith, entitl…

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ME/CFS Science @mecfsscience.org · 22/10/2025

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...

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ME/CFS Science @mecfsscience.org · 21/07/2026

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.

mecfsscience.org

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

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Tom Kindlon @tomkindlon.bsky.social · 19/07/2026

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/

gut.bmj.com

Cross-definition GWAS of IBS in 2.8 million individuals reveals cardiometabolic and triglyceride-linked mechanisms

Background Irritable bowel syndrome (IBS) is a complex disorder of gut-brain interaction, with heterogeneous symptoms, no available biomarkers and limited pathogenetic insight. Objective To identify ...

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Simon McGrath @simonmcg.bsky.social · 17/07/2026

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.

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ME/CFS Science @mecfsscience.org · 15/07/2026

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.

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ME/CFS Science @mecfsscience.org · 14/07/2026

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.

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ME/CFS Science @mecfsscience.org · 11/07/2026

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.

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ME/CFS Science @mecfsscience.org · 10/07/2026

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."

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ME/CFS Science @mecfsscience.org · 05/07/2026

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...

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Go Green @ecowarriorss.bsky.social · 06/07/2026

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...

anthropocenemagazine.org

Scientists built a solar reactor that eats plastic bottles and burps out clean hydrogen . . .at scale.

A Cambridge University team made the device with simple materials using a paint sprayer—offering a possible dual fix for plastic pollution and dirty hydrogen production

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Simon McGrath @simonmcg.bsky.social · 06/07/2026

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

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Ed Hawkins @edhawkins.org · 02/07/2026

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.

Comparing peak temperatures during June 1976 and June 2026

Comparing night-time temperatures during June 1976 and June 2026

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Chris Ponting @cgatist.bsky.social · 02/07/2026

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.

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ME/CFS Science @mecfsscience.org · 30/06/2026

7) The paper concludes that: "Given the risk of PEM which may be triggered already by travel to the rehabilitation clinic and the general exertion involved, the value of rehabilitation for patients with ME/CFS should be critically re-evaluated."

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ME/CFS Science @mecfsscience.org · 30/06/2026

1) 🇩🇪 The results of the German rehabilitation program for ME/CFS have been published. Unfortunately, the results are rather bleak: there was no improvement on multiple outcomes. A closer look at the main findings...

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ME Association @meassociation.org.uk · 30/06/2026

Yesterday (29.06.26), GOV UK released a press release stating that an audio recording will be taken at benefit assessments that are face-to-face and via telephone. meassociation.org.uk/xgx4 #PIP #DisabilityBenefits #UniversalCredit

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🇨🇦JOY 🇨🇦 @joycomes.bsky.social · 24/06/2026

Four-winged flying fish (tropical oceans) are remarkable they do not actually fly, but instead glide above the water. Using both their enlarged pectoral and pelvic fins, these fish can reach speeds of 70 km/h and sore up to 400meters in this in a single sustained flight to escape predators.

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Tom Kindlon @tomkindlon.bsky.social · 23/06/2026

PRIME International Symposium www.actionforme.org.uk/register-for... www.actionforme.org.uk/wp-content/u... www.tickettailor.com/events/unive... Screenshot from latest Science for ME weekly update #MEcfs #PwME

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Simon McGrath @simonmcg.bsky.social · 18/06/2026

So good to see proper studies like this of treatments, even if the studies show the treatments don't help. This helps the science, and saves PwME expanding energy and money on treatments with poor results. Research can focus on subgroups that might benefit.

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Adam @abrokenbattery.bsky.social · 25/05/2026

Full podcast: Long Covid Stole My Olympic Dream with Oonagh Cousins - Ready to Talk with Emma Barnett (53 mins) www.bbc.co.uk/programmes/p...

bbc.co.uk

BBC Sounds - Ready to Talk with Emma Barnett, Long Covid Stole My Olympic Dream with Oonagh Cousins

Oonagh Cousins was selected for Team GB, then Long Covid ended her Olympic hopes.

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