Naomi Harvey PhD
@naomidharvey.bsky.social
Zoologist & veterinary research. She/her.
22yrs with #MEcfs Pro-vax but vaccine injured. Life on pause due to moderate/severe ME/CFS ♿️
Patient Expert in ME/CFS, POTS and syndromic Long Covid.
Please excuse my typos.
22yrs with #MEcfs Pro-vax but vaccine injured. Life on pause due to moderate/severe ME/CFS ♿️
Patient Expert in ME/CFS, POTS and syndromic Long Covid.
Please excuse my typos.
Reposted by Naomi Harvey PhD
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.
October 8, 2025 at 6:13 AM
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.
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.
August 9, 2025 at 2:24 PM
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.
It’s ridiculous! Being blown way out of proportion.
August 9, 2025 at 2:22 PM
It’s ridiculous! Being blown way out of proportion.
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
August 9, 2025 at 7:30 AM
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...
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.
August 9, 2025 at 7:25 AM
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.
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 👍🏻
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 👍🏻
August 9, 2025 at 7:24 AM
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 👍🏻
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 👍🏻
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.
August 8, 2025 at 2:45 PM
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.
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.
August 8, 2025 at 2:44 PM
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.
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.
August 8, 2025 at 2:39 PM
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.
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.
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.
August 8, 2025 at 2:37 PM
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.
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.
You’re welcome, glad it was useful x
August 8, 2025 at 10:13 AM
You’re welcome, glad it was useful x
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.
August 7, 2025 at 11:32 AM
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.
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.
August 7, 2025 at 10:27 AM
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.
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.
August 7, 2025 at 10:27 AM
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.
It did! I’m officially old, lol. Thank goodness they don’t show you the age the system estimates 🤣
August 7, 2025 at 10:04 AM
It did! I’m officially old, lol. Thank goodness they don’t show you the age the system estimates 🤣
🤣 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.
August 7, 2025 at 10:02 AM
🤣 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.
Ah I don’t I’m afraid, sorry! That sounds like a good idea though.
August 7, 2025 at 9:53 AM
Ah I don’t I’m afraid, sorry! That sounds like a good idea though.
Just checked and I can’t access them, sorry.
August 7, 2025 at 9:46 AM
Just checked and I can’t access them, sorry.
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.
August 7, 2025 at 9:45 AM
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.
Pretty much 😄 it needs proper research funding like other big diseases get.
August 7, 2025 at 9:43 AM
Pretty much 😄 it needs proper research funding like other big diseases get.
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.
August 7, 2025 at 9:38 AM
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.