Author | Lightnews

Reposted by Naomi Harvey PhD

George Monbiot @georgemonbiot.bsky.social · 25d

On the one hand, medical science is beginning to get a handle on the very complex physiological basis of this disease. On the other hand, we can expect the greatest medical scandal (so far) of the 21st Century – the mass mistreatment and neglect of ME/CFS sufferers – to continue.

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Reposted by Naomi Harvey PhD

George Monbiot @georgemonbiot.bsky.social · 25d

ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome

Research could offer hope for ME patients – but some experts urge caution and say more studies needed

www.theguardian.com

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Reposted by Naomi Harvey PhD

Rose Mary @rose-mary-x.bsky.social · Aug 9

🚨!!PLS SHARE & TAG #pwME !!🚨
@natashadevon.bsky.social TONIGHT on @LBC 7-8pm
Re: @decodemestudy.bsky.social asking; 'Were you told it was in your head, and if so what do these findings mean to you?'
Tel/WhatsApp 0345 606 0973
SMS 84850
#MECFS #MyalgicEncephalomyelitis
#SevereMEDay #LongCovid

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 9

It’s drawn way out of proportion. It’s not even comparing the same thing. ‘Long Covid’ and Covid induced ME are very different things.

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 9

It’s ridiculous! Being blown way out of proportion.

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 9

Importantly, whilst the Long Covid study they reference had over 6,000 samples, which is well powered, it was NOT of people with Covid induced ME. It was a wide pool of people simply with long Covid, so it is not directly comparable. www.nature.com/articles/s41...

Genome-wide association study of long COVID - Nature Genetics

A genome-wide study by the Long COVID Host Genetics Initiative identifies an association between the FOXP4 locus and long COVID, implicating altered lung function in its pathophysiology.

www.nature.com

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 9

I finally checked the DecodeME preprint to verify the ‘no overlap with LC’ claim:

1) DecodeME only had 462 people with C19 caused ME

2) they did not run a separate GWAS on the LC cohort (it’s too small)

3) this is the piece of text people are referring to: it’s just a reference to another study

Long COVID, a condition with similar symptoms and starting, like most cases of ME/CFS, after an infection, has one genetic association near FOXP4 (72), but this was not shared with
ME/CFS (p = 0.59 for rs9367106).

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 9

Importantly, whilst the Long Covid study had over 6,000 samples, which is well powered, it was NOT of people with Covid induced ME. It was a wide pool of people simply with long Covid, so it is not at all comparable.

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 9

Hi 👋🏻 I finally checked the preprint and I see why things were confused:

1) DecodeME did only have 462 people with C19 caused ME

2) they did not run a separate GWAS on the LC cohort

3) this is the piece of text people are referring to, as you say, it’s a reference to another study 👍🏻

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 8

It’s what would be called ‘underpowered’. There isn’t enough power in the sample size to detect these kinds of tiny associations. They may very be there, they just can’t be seen in such a small sample.

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 8

I believe there was but what I’m saying is it was too small. A GWAS needs thousands of samples. You can do them on 400, but it would be like looking in pitch darkness with a really weak glow stick instead of a powerful lamp.

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Reposted by Naomi Harvey PhD

betsy ladyzhets 😷 @betsyladyzhets.bsky.social · Aug 8

Today, on Severe ME Awareness Day, @thesicktimes.org is proud to publish this piece by @naomiwhitt.bsky.social sharing the story of singer Kara Jane and her new album, released posthumously by her family. thesicktimes.org/2025/08/08/p...

Posthumous album of singer Kara Jane released on Severe ME Awareness Day - The Sick Times

This month, on August 8, the posthumous album of a young singer was released to mark Severe ME Awareness Day. Kara Jane, from Derbyshire in the U.K., had myalgic encephalomyelitis (ME) for most of her...

thesicktimes.org

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 8

We cannot take that finding with any real meaning, because the sample size for the ME-LC group was so small. It was only just over 400 people when for this type of analysis you need ten times that, minimum. It’s a meaningless result essentially.

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 8

No, the paper didn’t include the rs numbers. There were over 40 SNP’s identified in 8 gene regions.

As you can see from the 23andMe data, each gene has a lot of different SNP’s and at the moment we don’t know which ones are flagged in this study.

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 8

You’re welcome, glad it was useful x

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 7

In this case it deletes the image as soon as it’s estimated your age. Or at least it’s supposed to, so there’s obviously an element of trust there.

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 7

But the way genes work, that weakness that risks ME, may be a benefit for something else. Like maybe it reduces the chances of another disease.

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 7

You’re right that we can’t know that from the details we have. But, in terms of the risk for ME, they presumably provide cumulative a weakness in their systems they’re in that increases the risk of the system collapse and disease process.

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 7

It did! I’m officially old, lol. Thank goodness they don’t show you the age the system estimates 🤣

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 7

🤣 really? That’s so funny! I assumed it would want a copy of my ID which I’m not comfortable uploading to websites given how often they’re hacked.

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 7

Ah I don’t I’m afraid, sorry! That sounds like a good idea though.

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 7

Just checked and I can’t access them, sorry.

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 7

Sure, not sure if my DM’s even work at the moment though as I’ve heard some are blocked by this new ID thing.

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 7

Pretty much 😄 it needs proper research funding like other big diseases get.

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Naomi Harvey PhD @naomidharvey.bsky.social · Aug 7

Not at all! The results help to form a map of the systems that are implicated in the disease. We know these genes 🧬 and the areas they’re linked to are where things are going wrong/being damaged. So they provide a map for future research to focus on.

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