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Simon McGrath

@simonmcg.bsky.social
647 followers 76 following 396 posts

I occasionally try to explain and comment on ME research, or even contribute to it. And I advocate for more and better research.

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Reposted by Simon McGrath
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 (NB: unpublished results that need replication.)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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Tom Kindlon @tomkindlon.bsky.social · 20/09/2026
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @cgatist.bsky.social

SPECIAL GUEST SPEAKER EVENT
Professor Chris Ponting
Lead scientist of the DecodeME project, sharing what ME/CFS genetics is revealing and where research is heading next.
THE UNIVERSITY
of EDINBURGH
PROUDLY ORGANISED BY
ME Support
Navigating ME/CFS and Long COVID
Decoding ME: ME/CFS Genetics & Biomarker Studies
•Could ME/CFS be diagnosed with a blood test?
• Why ME/CFS genetics matters
This talk will cover:
• What genetics reveals about disease-relevant genes, cells and systems
• Sequence ME & Long COVID: latest updates
.Is ME/CFS one condition or many?
• Q&A with Professor Ponting
24th September 2026 7 - 8pm (NZ time)
Click to join here meet.google.com/mdq-sjcc-kyf
About our Guest Speaker
Chris Ponting is Chair of Medical Bioinformatics at the University of Edinburgh. He started research as an experimental particle physicist before transitioning via structural biophysics and computational genomics, into functional genomics and human disease genetics.
Chris provided leadership in international genome sequencing projects and has published over 370 articles. He is Chief Investigator of the ongoing DecodeME project, which now includes the whole genome sequencing of 6,000 people with ME/CFS ("Sequence ME & Long Covid").
Learn more: edwebprofiles.ed.ac.uk/profile/chris-ponting
info@mesupport.org.nz
www.mesupport.org.nz
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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 · 20/09/2026
So is this saying that drug tolerance is induced by a different kind of stimulation of the same CB1 receptor as analgesia?
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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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Simon McGrath @simonmcg.bsky.social · 14/09/2026
This is only assessing symptom domains using questionable measures, as you point at. What do they recommend for excluding alternate diagnoses? In the best two studies we have, that rules out about half of GP referred cases.
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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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Simon McGrath @simonmcg.bsky.social · 06/09/2026
Lots of things do that, the comparison is with baseline, not with extremes of a healthy population. We need data to address the question, not ducking the question. That's what science and Research are about.
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Simon McGrath @simonmcg.bsky.social · 06/09/2026
So it comes down to opinion, no science involved? That did seem to be the direction of travel.
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Simon McGrath @simonmcg.bsky.social · 05/09/2026
It showed it their treatment didn't work, and they realised that
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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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Simon McGrath @simonmcg.bsky.social · 04/09/2026
And why did the Pace trial include objective measures – it was originally going to include step count. They seem to have seen things differently to you.
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Simon McGrath @simonmcg.bsky.social · 04/09/2026
What's yours, and what's the evidence of that?
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Simon McGrath @simonmcg.bsky.social · 04/09/2026
For a very highly disabling illness if step count and fitness don't improve the treatment doesn't work. Especially for LP which claims recovery. Pace included fitness test/walking distance because to show the treatment worked, it didn't. Symptom measures will always improve in a non-blinded trial
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Simon McGrath @simonmcg.bsky.social · 03/09/2026
That decision is part of designing good a trial. For something like the LP, fitness and walking distance (as Pace used) or step count would be good. If working, maybe hours worked if there's an objective way of logging that. shrugging and saying too difficult is not the answer.
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Simon McGrath @simonmcg.bsky.social · 02/09/2026
The only way to tackle the fatal flaw is to include objective measures. That's not hard, why don't they do it?
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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 · 29/08/2026
Thanks, that looks a lot more convincing.
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Simon McGrath @simonmcg.bsky.social · 29/08/2026
10 years ago, really?! That was a paired piece, with Peter White writing the other one.
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valebodi.bsky.social @valebodi.bsky.social · 29/08/2026
Ten years ago next month: Simon McGrath: PACE trial shows why medicine needs patients to scrutinise studies about their health September 22, 2016 in BMJ #ME/CFS #pwME blogs.bmj.com/bmj/2016/09/... @simonmcg.bsky.social
blogs.bmj.com
Simon McGrath: PACE trial shows why medicine needs patients to scrutinise studies about their health - The BMJ
Like all patients, what I want most from clinical research is treatments that work, not ones that merely look good on paper. As The BMJ has pointed out, patients are [...]More...
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Simon McGrath @simonmcg.bsky.social · 29/08/2026
I agree, well worth a replication, and is a tantalising connection with the female skew. But the Majeed data concerns me: it shows the majority of patients overlapping with the majority of controls, and a small proportion of patients with much higher values. Seen that pattern often before.
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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 · 24/08/2026
1) A short but powerful blog by Anil van der Zee: "Not an Advocate. Not Your Silver Lining Porn. Just Desperation." 👇
anilvanderzee.com
Not an Advocate. Not Your Silver Lining Porn. Just Desperation. - Anil van der Zee
I'm not a patient advocate. I'm not an activist. I'm just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopefully, one day, return to a more normal life. While raising awareness for ME also keeps me busy, I
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Simon McGrath @simonmcg.bsky.social · 16/08/2026
The idea is for researchers in different groups to come together to create one large study that gives robust results. Instead of each group pursuing a different idea with too-small studies. Money always helps, but so can a different strategy.
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Rae Radford @raeradford.bsky.social · 15/08/2026
Happy #Caturday
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Simon McGrath @simonmcg.bsky.social · 14/08/2026
Brilliant to have experts like that joining the field, and thanks for the great analysis It's still a very small MRI sample. I know the MRI field generally was talking about collaborations to achieve much bigger sample sizes, don't know if that became.
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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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Simon McGrath @simonmcg.bsky.social · 11/08/2026
Also true of almost all psychosocial treatments. Those doing the studies know criticism that non-blinding is a fatal flaw with subjective outcomes yet never use the obvious solution of using objective outcome measures. Other than PACE, where they took 5 years to publish null fitness results.
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Simon McGrath @simonmcg.bsky.social · 11/08/2026
Thanks
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Simon McGrath @simonmcg.bsky.social · 09/08/2026
Thanks, do you know when it appeared? I hadn't seen that data before, which is compelling.
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Simon McGrath @simonmcg.bsky.social · 08/08/2026
Can someone point me to the original source of this map/data? I can't remember seeing this early in the pandemic, but it looks like critical evidence.
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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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Simon McGrath @simonmcg.bsky.social · 29/07/2026
Just checking, I've understood this: are you saying the findings are versus healthy controls, not bedrest healthy controls?
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