Simon McGrath

@simonmcg.bsky.social

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

@mecfsscience.orgReposted by @simonmcg.bsky.social

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.

@uoe-igc.bsky.socialReposted by @simonmcg.bsky.social

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.

@cgatist.bsky.socialReposted by @simonmcg.bsky.social

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 (NB: unpublished results that need replication.)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

@georgemonbiot.bsky.socialReposted by @simonmcg.bsky.social

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.comAbandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George MonbiotChanges 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
@cgatist.bsky.socialReposted by @simonmcg.bsky.social

📢 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.
@georgemonbiot.bsky.socialReposted by @simonmcg.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.

@simonmcg.bsky.social

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.

@uoe-igc.bsky.socialReposted by @simonmcg.bsky.social

“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.

@tomkindlon.bsky.socialReposted by @simonmcg.bsky.social

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.
@mecfsscience.orgReposted by @simonmcg.bsky.social

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 👇

@simonmcg.bsky.social

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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