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Simon McGrath
@simonmcg.bsky.social
560 followers 76 following 160 posts
I occasionally try to explain and comment on ME researchh, or even contribute to it. And I advocate for more and better research.
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Simon McGrath @simonmcg.bsky.social · 40m
It's the Action for ME 5-yearly Big Survey:
- How has ME affected your life?
– How has the NHS treated you?
– Had Social care provided what you need?
– has ME hit your finances, and that of those who support you?

Provide answers for researchers and future campaigns.

48 Qs, but we have till Jan.
actionforme.bsky.social
Action for ME @actionforme.bsky.social · 5d
Our first Big Survey in over 5 years launches next week! You can sign up in advance to receive the survey once it's live, head to our web page to find out more: www.actionforme.org.uk/research-cam...

📅Opens 10am, Monday 13th October - 27th January 2026
The Action for ME logo appears in the top left corner. Below, white text on a dark background reads: “Register now for the Big Survey 2025, launching next week.” The image includes someone working on a laptop.
Reposted by Simon McGrath
kacheston.bsky.social
Katharine Cheston @kacheston.bsky.social · 1d
The Big Survey is now live!

It has been such a privilege to get to work on this with such a wonderful, inspiring team at @actionforme.bsky.social, including our brilliant Patient and Public Involvement Group, made up of people with lived experience of ME and Long Covid.
actionforme.bsky.social
Action for ME @actionforme.bsky.social · 1d
Our 2025 Big Survey is now open! 🎉

For more information, our FAQs, and to take part, head to our web page: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/

Thank you for supporting our research💙

🤝in collaboration with
@durhamimh.bsky.social @kacheston.bsky.social
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severemecymru.bsky.social
Severe ME Difrifol Cymru @severemecymru.bsky.social · 8h
Welsh Senedd Debate on Severe and Very Severe ME – 15th October - POSTPONED to 26th Nov.
 
Adam Price, MS, was due to lead the Members Debate on Severe and Very Severe ME tomorrow in the Welsh Senedd (Parliament), but on Sunday he suffered a close family bereavement.  1/4
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swastrosarah.bsky.social
sarah boothby @swastrosarah.bsky.social · 6h
"The UK Medical Research Council recently awarded £800,000 over four years to PRIME, a partnership between Action For ME and the University of Edinburgh" www.youtube.com/watch?v=1dgK...
Interview with Chris Ponting about PRIME, a project to increase infrastructure for ME/CFS research
YouTube video by David M Tuller
www.youtube.com
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 1d
Reminder: The DecodeME team want to do a related genetic study with the samples they have collected already but unfortunately don’t have the funding yet:
megenetics.org.uk/our-projects...
#MEcfs #PwME #CFS
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mecfsskeptic.bsky.social
ME/CFS Science @mecfsskeptic.bsky.social · 12h
2) PRIME is a collaboration between the University of Edinburgh, the ME Genetics Centre of Excellence, and Action for ME, who will ensure that people with lived experience of ME/CFS are at the centre of the project.
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Simon McGrath @simonmcg.bsky.social · 12h
Great summary of David Teller interviewing Chris Ponting about the new PRIME initiative to boost ME research in the UK and worldwide. This aims to for international consortia for genetics and for molecular biomarkers. Plus 15 new UK research collaborations. Plus conferences/workshops.
mecfsskeptic.bsky.social
ME/CFS Science @mecfsskeptic.bsky.social · 12h
2) PRIME is a collaboration between the University of Edinburgh, the ME Genetics Centre of Excellence, and Action for ME, who will ensure that people with lived experience of ME/CFS are at the centre of the project.
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mecfsskeptic.bsky.social
ME/CFS Science @mecfsskeptic.bsky.social · 12h
1) Another interesting interview of Prof Chris Ponting by David Tuller.

They talked about PRIME, a new 4-year project that will provide an infrastructure to accelerate ME/CFS research. It received 0.8 million in funding from the Medical Research Council (MRC).
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Simon McGrath @simonmcg.bsky.social · 1d
The blog highlights the gene's immune functions, & we have the link to the infectious onset. Insomnia GWAS are huge, do you know the OLMF4 effect size? Depression has a substantial immune subgroup (its antidepressant resistant).
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Simon McGrath @simonmcg.bsky.social · 1d
Also, you linked to a paper showing that OLMF4 correlates with illness severity in a number of diseases. There is evidence of a link to severity of initial infection in ME/CFS. E.g. Peter White glandular fever study (correlation with days of bedrest), Dubbo (correlation with severity of symptoms).
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Simon McGrath @simonmcg.bsky.social · 1d
Thank you for this excellent blog. I thought you would've included OLFM4 as it has the additional evidence that's it's only significant in the infectious onset cohort, not the full cohort, reinforcing an immune role for it. It's also the only gene at that location.
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mecfsskeptic.bsky.social
ME/CFS Science @mecfsskeptic.bsky.social · 1d
1) We’ve just published our second instalment on the DecodeME results, this timing zooming in on the genes associated with ME/CFS.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 3d
5-page @scienceforme.bsky.social post-exertional malaise ( #PEM ) fact sheet
www.s4me.info/docs/PEM_Fac...

Headings:
-Characteristics of PEM
-Symptoms of PEM
-Exertion and other PEM triggers
-Effects of exertion that are not PEM
-Living with PEM
-Examples of PEM
-Research on PEM

#MEcfs #CFS #PwME
Logo: Science for ME: Where science and ME/CFS community meet Post-exertional malaise (PEM) Key points  People with ME/CFS have episodes when they are much more ill than usual following physical or mental exertion. This is called post-exertional malaise, or PEM.  PEM is a hallmark of ME/CFS and is important for diagnosis  Activities like a short walk or reading a few pages may trigger PEM. For the most severely ill, even chewing may trigger it. For many, light, sound and other sensory stimuli also trigger PEM. Often it is the combined effect of all activities and stimuli over a day or more that triggers PEM.  PEM usually starts hours or a day or two after it is triggered and can last for hours, days, weeks or longer. During this time, a person cannot do as much as usual and needs to rest.  There is no effective treatment for PEM.  PEM is not the same as the fatigue and muscle soreness anyone can experience after more activity than usual.
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tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · 3d
US research:

"COVID-19 may have created a new year-round baseline for work absences...similar to influenza season conditions before the pandemic"

jamanetwork.com/journals/jam...

"Policymakers should consider...policies & actions that mitigate the spread of #COVID19"

#LongCovid #CovidIsNotOver
Key Points Question Following the COVID-19 pandemic, has SARS-CoV-2 circulation been associated with health-related absences from work and labor force exits? Findings In this nationally representative cohort study of approximately 158.4 million workers, rates of health-related work absences remained elevated after the pandemic and were associated with circulating SARS-CoV-2 and subsequent decreases in labor force participation by absence-affected workers. Meaning These findings suggest that COVID-19 may have created a new year-round baseline for work absences that is similar to influenza season conditions before the pandemic; policymakers should consider expanding interventions and data collection efforts to address the negative impacts of COVID-19 on the labor force.
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Simon McGrath @simonmcg.bsky.social · 3d
Thank you for taking the trouble to explain. Some of that is over my head, but I think I get the basic point: the study analysis is incapable of showing what it claims to show
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Simon McGrath @simonmcg.bsky.social · 4d
That looks stunning, I'm glad you got out
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Simon McGrath @simonmcg.bsky.social · 4d
Thanks – I'm not sure if I've followed correctly, but did they the statistical power to investigate about half a dozen parameters?
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youngemerg.bsky.social
youngEMERG @youngemerg.bsky.social · 4d
📢 IGNITE ME Journal Club Alert!
Join our next session for early-career #MECFS researchers on Oct 13, 2025, at 11am EST 🗓️

💡 We’ll explore the future of IGNITE ME and introduce a pre-print journal club concept!
💻 Zoom: 940 7510 9828 | 🔑 972035
#IGNITEME #LongCOVID #ResearchCommunity
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Simon McGrath @simonmcg.bsky.social · 5d
I think this has a serious flaw. it asks if you pace and if this affects the amount of PEM you have (it does, that's why we do it.) but then scores each PEM symptom on Frequency as well as severity, giving low scores if pacing works, even if severity v high. I this could skew results/ interpretation
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Simon McGrath @simonmcg.bsky.social · 6d
Haha!
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Simon McGrath @simonmcg.bsky.social · 6d
There must be well over 100 ME/CFS biomarker studies, all claiming success – but none have been replicated.

And that's probably no better bet for forgetting media coverage either – it makes such a nice story (every time).
cgatist.bsky.social
Chris Ponting @cgatist.bsky.social · 6d
The research used to claim reliability of a ME/CFS blood test has important limitations, shown here.

www.theguardian.com/society/2025...
Three possible confounders in a study proposing an ME/CFS blood test : sex/age, batch and inactivity/severity. Better designed studies by independent researchers are necessary.
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mecfsskeptic.bsky.social
ME/CFS Science @mecfsskeptic.bsky.social · 6d
1) There's a new ME/CFS study that is getting a lot of attention in the media. It focuses on epigenetics: how genes are switched on or off by folding DNA in a different way.

You genetic code itself is fixed but the expression of genes can change by environmental factors.
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Simon McGrath @simonmcg.bsky.social · 6d
Is there some rule of thumb that you should have multiple more cases then parameters?
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cgatist.bsky.social
Chris Ponting @cgatist.bsky.social · 6d
The research used to claim reliability of a ME/CFS blood test has important limitations, shown here.

www.theguardian.com/society/2025...
Three possible confounders in a study proposing an ME/CFS blood test : sex/age, batch and inactivity/severity. Better designed studies by independent researchers are necessary.
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Simon McGrath @simonmcg.bsky.social · 6d
Oh great