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.
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
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
August 9, 2025 at 7:28 AM
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
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
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 👍🏻
Look 👀 at this - five of the news outlets are actually using ‘ME’ in their headline, and four of those are using it exclusively, without CFS!! That’s real change right there.
August 7, 2025 at 9:29 AM
Look 👀 at this - five of the news outlets are actually using ‘ME’ in their headline, and four of those are using it exclusively, without CFS!! That’s real change right there.
@chronically2784.bsky.social i can’t send you images here in DM but I saw this on the other place and wanted to share with you x
June 11, 2025 at 5:53 PM
@chronically2784.bsky.social i can’t send you images here in DM but I saw this on the other place and wanted to share with you x
This is my SOS 🆘
I’ve had ME/CFS since I was 15 and since 2022 I have been Severe, in the 25% who are house or bedbound.
It’s frightening and awful and we have no help or dedicated medical care.
We need help, this is my SOS 🆘
#DisabilitySOS #MillionsMissing @meactnet.bsky.social
I’ve had ME/CFS since I was 15 and since 2022 I have been Severe, in the 25% who are house or bedbound.
It’s frightening and awful and we have no help or dedicated medical care.
We need help, this is my SOS 🆘
#DisabilitySOS #MillionsMissing @meactnet.bsky.social
May 12, 2025 at 6:13 PM
This is my SOS 🆘
I’ve had ME/CFS since I was 15 and since 2022 I have been Severe, in the 25% who are house or bedbound.
It’s frightening and awful and we have no help or dedicated medical care.
We need help, this is my SOS 🆘
#DisabilitySOS #MillionsMissing @meactnet.bsky.social
I’ve had ME/CFS since I was 15 and since 2022 I have been Severe, in the 25% who are house or bedbound.
It’s frightening and awful and we have no help or dedicated medical care.
We need help, this is my SOS 🆘
#DisabilitySOS #MillionsMissing @meactnet.bsky.social
Amazingly, that tulip matured into this stunner
April 15, 2025 at 5:22 PM
Amazingly, that tulip matured into this stunner
For everyone having a hard time (or harder time) right now 🫂
April 13, 2025 at 6:54 PM
For everyone having a hard time (or harder time) right now 🫂
Has anyone here tried oxerutins (Paroven and Venoruton are two brand names) for POTS, ME, LC etc?
It’s a synthetic form of rutin used for venous insufficiency. It reduces blood vessel permeability and improves small vessel blood flow. One pwME on Twitter reports reduced PEM with it.
It’s a synthetic form of rutin used for venous insufficiency. It reduces blood vessel permeability and improves small vessel blood flow. One pwME on Twitter reports reduced PEM with it.
April 12, 2025 at 9:30 AM
Has anyone here tried oxerutins (Paroven and Venoruton are two brand names) for POTS, ME, LC etc?
It’s a synthetic form of rutin used for venous insufficiency. It reduces blood vessel permeability and improves small vessel blood flow. One pwME on Twitter reports reduced PEM with it.
It’s a synthetic form of rutin used for venous insufficiency. It reduces blood vessel permeability and improves small vessel blood flow. One pwME on Twitter reports reduced PEM with it.
The pot of bulbs my husband planted in the autumn is putting on quite a show 🌷🌷🌷 #TimelineCleanse
April 6, 2025 at 3:02 PM
The pot of bulbs my husband planted in the autumn is putting on quite a show 🌷🌷🌷 #TimelineCleanse
Well that’s just peachy
Confirmation that vaccine derived spike protein can persist for at least 17 months in brain artery tissue and, icing on the cake: women are shat on again
“Notably, spike protein positivity was observed exclusively in female patients”
www.sciencedirect.com/science/arti...
Confirmation that vaccine derived spike protein can persist for at least 17 months in brain artery tissue and, icing on the cake: women are shat on again
“Notably, spike protein positivity was observed exclusively in female patients”
www.sciencedirect.com/science/arti...
April 4, 2025 at 1:54 PM
Well that’s just peachy
Confirmation that vaccine derived spike protein can persist for at least 17 months in brain artery tissue and, icing on the cake: women are shat on again
“Notably, spike protein positivity was observed exclusively in female patients”
www.sciencedirect.com/science/arti...
Confirmation that vaccine derived spike protein can persist for at least 17 months in brain artery tissue and, icing on the cake: women are shat on again
“Notably, spike protein positivity was observed exclusively in female patients”
www.sciencedirect.com/science/arti...
Wow.
Important Letter here:
It seems *every* source (from charities to governments) has wrongly cited a figure from a paper on the global prevalence of #MEcfs which was actually citing a paper about MS not ME 🫣
translational-medicine.biomedcentral.com/articles/10....
Important Letter here:
It seems *every* source (from charities to governments) has wrongly cited a figure from a paper on the global prevalence of #MEcfs which was actually citing a paper about MS not ME 🫣
translational-medicine.biomedcentral.com/articles/10....
![Section of the letter saying:
A global ME/CFS population of 17 to 24 million people is reported in articles such as those published in BMC Medicine [2] and Science [3], all referencing Lim et al. The same range of numbers is also easy to find in patient advocacy websites and news reports, such as those of the American Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Society [4] and CNN [5], all updated after Lim et al.’s article was published. However, this figure is drawn from the Background section of Lim et al.’s article, where they state, “In worldwide statistics, approximately 1% of the population, 17 to 24 million people, suffer from this condition [14], which is likely to be as common as rheumatoid arthritis” [1]. The cited reference (reference [14]) is an article about the global burden of multiple sclerosis, and is not relevant to the global ME/CFS population.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:sqxcta67dlxiavwuq5zthipo/bafkreicak5b675odmngjpa6ecprnqltiwtyipu5thhucviiklncxkqarke@jpeg)
March 16, 2025 at 6:28 PM
Wow.
Important Letter here:
It seems *every* source (from charities to governments) has wrongly cited a figure from a paper on the global prevalence of #MEcfs which was actually citing a paper about MS not ME 🫣
translational-medicine.biomedcentral.com/articles/10....
Important Letter here:
It seems *every* source (from charities to governments) has wrongly cited a figure from a paper on the global prevalence of #MEcfs which was actually citing a paper about MS not ME 🫣
translational-medicine.biomedcentral.com/articles/10....
Newly opened camellia flower, our first flower this #Spring #photography
March 13, 2025 at 3:30 PM
Newly opened camellia flower, our first flower this #Spring #photography
Some phone-microscope photos from our houseplants and dried grass
March 8, 2025 at 4:50 PM
Some phone-microscope photos from our houseplants and dried grass
This is positive, but is still shockingly below levels for other severe diseases.
For example, Parkinson’s disease had 10,784 papers published on it in 2024 alone, and 2,177 in the first two months of 2025.
Yet the disease burden of ME/CFS is significantly greater
For example, Parkinson’s disease had 10,784 papers published on it in 2024 alone, and 2,177 in the first two months of 2025.
Yet the disease burden of ME/CFS is significantly greater
February 28, 2025 at 10:37 AM
This is positive, but is still shockingly below levels for other severe diseases.
For example, Parkinson’s disease had 10,784 papers published on it in 2024 alone, and 2,177 in the first two months of 2025.
Yet the disease burden of ME/CFS is significantly greater
For example, Parkinson’s disease had 10,784 papers published on it in 2024 alone, and 2,177 in the first two months of 2025.
Yet the disease burden of ME/CFS is significantly greater
Definitely feeling like I’m seeing more research on ME/CFS than ever before.
In 2024 there was an average of 56 papers published per month for “chronic fatigue syndrome” [based on PubMed].
In the two months of 2025 so far there have been 143, which is 71.5 per month.
In 2024 there was an average of 56 papers published per month for “chronic fatigue syndrome” [based on PubMed].
In the two months of 2025 so far there have been 143, which is 71.5 per month.
February 28, 2025 at 10:37 AM
Definitely feeling like I’m seeing more research on ME/CFS than ever before.
In 2024 there was an average of 56 papers published per month for “chronic fatigue syndrome” [based on PubMed].
In the two months of 2025 so far there have been 143, which is 71.5 per month.
In 2024 there was an average of 56 papers published per month for “chronic fatigue syndrome” [based on PubMed].
In the two months of 2025 so far there have been 143, which is 71.5 per month.
The studies definition of Long COVID was extremely broad
February 21, 2025 at 4:05 PM
The studies definition of Long COVID was extremely broad
New Lancet study shows extremely low, 2%, recovery rate from Long COVID.
However, those who considered their Long COVID resolved were still in worse health than those who never had Long COVID.
www.thelancet.com/journals/lan...
However, those who considered their Long COVID resolved were still in worse health than those who never had Long COVID.
www.thelancet.com/journals/lan...
February 20, 2025 at 12:48 PM
New Lancet study shows extremely low, 2%, recovery rate from Long COVID.
However, those who considered their Long COVID resolved were still in worse health than those who never had Long COVID.
www.thelancet.com/journals/lan...
However, those who considered their Long COVID resolved were still in worse health than those who never had Long COVID.
www.thelancet.com/journals/lan...
I could tell you must have one from your profile picture 😊 it’s definitely handy to be able to just pop it onto the phone. I’ve managed to get some great video clips (too big to upload here) of bees & butterflies on flowers with it too, sometimes from my recliner next to the raised beds.
February 17, 2025 at 6:20 PM
I could tell you must have one from your profile picture 😊 it’s definitely handy to be able to just pop it onto the phone. I’ve managed to get some great video clips (too big to upload here) of bees & butterflies on flowers with it too, sometimes from my recliner next to the raised beds.
We had some sleet recently and I tried my microscope-phone lens on a snowflake. You can see it was sleet as it was already part melted (the flake was caught by landing it on a frozen Tupperware container to keep it from melting)
February 17, 2025 at 1:09 PM
We had some sleet recently and I tried my microscope-phone lens on a snowflake. You can see it was sleet as it was already part melted (the flake was caught by landing it on a frozen Tupperware container to keep it from melting)
Taking a look at some seeds under the phone-microscope.
These are dried Allium seeds sitting in their pods.
These are dried Allium seeds sitting in their pods.
February 16, 2025 at 3:30 PM
Taking a look at some seeds under the phone-microscope.
These are dried Allium seeds sitting in their pods.
These are dried Allium seeds sitting in their pods.
Salt before bed for insomnia? Interesting
February 7, 2025 at 9:21 AM
Salt before bed for insomnia? Interesting
This is not what herxing is 😞 I see it used incorrectly so often and it’s a problem because an actual Herxheimer response is a very real and can be very serious thing. They can be fatal.
It’s a reaction to die off of bacteria, not a detox response.
It’s a reaction to die off of bacteria, not a detox response.
February 2, 2025 at 4:33 PM
This is not what herxing is 😞 I see it used incorrectly so often and it’s a problem because an actual Herxheimer response is a very real and can be very serious thing. They can be fatal.
It’s a reaction to die off of bacteria, not a detox response.
It’s a reaction to die off of bacteria, not a detox response.
Oh no! Sorry to hear this Kate. I hope you get home soon 🫂 sending a photo of Loki in his winter coat in the frost.
January 29, 2025 at 4:37 PM
Oh no! Sorry to hear this Kate. I hope you get home soon 🫂 sending a photo of Loki in his winter coat in the frost.
Participants need to be in the NYC area (USA) able to visit the centre for one or more blood draws
#LongCovid #MyalgicEncephalomyelitis #ChronicLyme #MEcfs #Lyme
#LongCovid #MyalgicEncephalomyelitis #ChronicLyme #MEcfs #Lyme
January 27, 2025 at 2:47 PM
Participants need to be in the NYC area (USA) able to visit the centre for one or more blood draws
#LongCovid #MyalgicEncephalomyelitis #ChronicLyme #MEcfs #Lyme
#LongCovid #MyalgicEncephalomyelitis #ChronicLyme #MEcfs #Lyme