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.
Reposted by Naomi Harvey PhD
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...
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
October 8, 2025 at 6:09 AM
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...
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
Reposted by Naomi Harvey PhD
🚨!!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
@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
August 9, 2025 at 12:33 PM
🚨!!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
@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
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
Reposted by Naomi Harvey PhD
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
August 8, 2025 at 2:20 PM
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...
Huge thank you to Chris Ponting and the @decodemestudy.bsky.social team for all their work on this project, and the work still to come.
These results are a great foundation and provide a lot of validation for patients across the world 🩵
These results are a great foundation and provide a lot of validation for patients across the world 🩵
Clip: Professor Chris Ponting tells BBC Scotland the world’s largest genetic study of #MECFS has identified eight genome regions linked to the disease. He says the field is finally being kickstarted after years of stigma and neglect.
August 7, 2025 at 9:31 AM
Huge thank you to Chris Ponting and the @decodemestudy.bsky.social team for all their work on this project, and the work still to come.
These results are a great foundation and provide a lot of validation for patients across the world 🩵
These results are a great foundation and provide a lot of validation for patients across the world 🩵
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.
I’m seeing a lot of confusion about ‘risk’ versus cause.
The DecodeME results do NOT show that ME is a genetically caused disease.
There is no gene that causes ME.
They do show certain genes can increases our chances of developing ME. 🧵
The DecodeME results do NOT show that ME is a genetically caused disease.
There is no gene that causes ME.
They do show certain genes can increases our chances of developing ME. 🧵
August 7, 2025 at 9:24 AM
I’m seeing a lot of confusion about ‘risk’ versus cause.
The DecodeME results do NOT show that ME is a genetically caused disease.
There is no gene that causes ME.
They do show certain genes can increases our chances of developing ME. 🧵
The DecodeME results do NOT show that ME is a genetically caused disease.
There is no gene that causes ME.
They do show certain genes can increases our chances of developing ME. 🧵
Reposted by Naomi Harvey PhD
After the release of our initial DNA results last night, Nicky Campbell's Five Live radio programme will cover ME/CFS this morning, we expect around 10am www.bbc.co.uk/programmes/m...
BBC Radio 5 Live - Nicky Campbell
Nicky Campbell takes your calls on the day's talking points.
www.bbc.co.uk
August 7, 2025 at 9:02 AM
After the release of our initial DNA results last night, Nicky Campbell's Five Live radio programme will cover ME/CFS this morning, we expect around 10am www.bbc.co.uk/programmes/m...
Reposted by Naomi Harvey PhD
Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!
July 31, 2025 at 1:38 PM
Within a week of the plan being published, There were three petitions for people with severe ME being held against their will by the NHS. And now this mother of a child with ME being *arrested* for her death despite the harms caused by THE NHS!!!
Reposted by Naomi Harvey PhD
Read her words. Isla was already suffering age 8 at the hand of the UK health care systems.
Last year, she died from ME, despite her parents best efforts to protect her from this system.
So now the system has arrested Isla's mum...
@ashleydaltonmp.bsky.social your plan is not fit for purpose.
Last year, she died from ME, despite her parents best efforts to protect her from this system.
So now the system has arrested Isla's mum...
@ashleydaltonmp.bsky.social your plan is not fit for purpose.
This is Isla at age 8.
She died at age 18 with severe ME/CFS.
Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.
She died at age 18 with severe ME/CFS.
Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.
July 31, 2025 at 1:09 PM
Read her words. Isla was already suffering age 8 at the hand of the UK health care systems.
Last year, she died from ME, despite her parents best efforts to protect her from this system.
So now the system has arrested Isla's mum...
@ashleydaltonmp.bsky.social your plan is not fit for purpose.
Last year, she died from ME, despite her parents best efforts to protect her from this system.
So now the system has arrested Isla's mum...
@ashleydaltonmp.bsky.social your plan is not fit for purpose.
Reposted by Naomi Harvey PhD
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
#MEKills #HumanRights
July 31, 2025 at 6:45 AM
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
#MEKills #HumanRights
Reposted by Naomi Harvey PhD
@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights
#MEKills #HumanRights
July 31, 2025 at 7:11 AM
@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.
@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
Reposted by Naomi Harvey PhD
Evaluating the Causal Role of Genetically Inferred Immune Cells and Inflammatory Cytokines on ME/CFS
www.mdpi.com/2227-9059/13...
"These data are supportive of the causality that immune system dysfunction & inflammatory variables play a pivotal role in the development of ME/CFS"
#MEcfs #CFS
www.mdpi.com/2227-9059/13...
"These data are supportive of the causality that immune system dysfunction & inflammatory variables play a pivotal role in the development of ME/CFS"
#MEcfs #CFS
May 15, 2025 at 4:04 PM
Evaluating the Causal Role of Genetically Inferred Immune Cells and Inflammatory Cytokines on ME/CFS
www.mdpi.com/2227-9059/13...
"These data are supportive of the causality that immune system dysfunction & inflammatory variables play a pivotal role in the development of ME/CFS"
#MEcfs #CFS
www.mdpi.com/2227-9059/13...
"These data are supportive of the causality that immune system dysfunction & inflammatory variables play a pivotal role in the development of ME/CFS"
#MEcfs #CFS
Reposted by Naomi Harvey PhD
May 17, 2025 at 8:20 AM
Reposted by Naomi Harvey PhD
Excellent piece by Aussie husband, father & carer of a mother & daughter with #MyalgicEncephalomyelitis #mecfs 😊 Also on the SBS program Insight at 8.30 tonight, or on the SBS app. (Might be geoblocked.) 🧵
www.sbs.com.au/news/insight...
www.sbs.com.au/news/insight...
My wife has largely been bedbound for decades. Then our child joined her in isolation
Peter McCluskey's wife Jenny and their daughter live with the same invisible illness. A syndrome that Peter likens to living in "lockdown" and believes medical professionals downplay.
www.sbs.com.au
May 20, 2025 at 9:15 AM
Excellent piece by Aussie husband, father & carer of a mother & daughter with #MyalgicEncephalomyelitis #mecfs 😊 Also on the SBS program Insight at 8.30 tonight, or on the SBS app. (Might be geoblocked.) 🧵
www.sbs.com.au/news/insight...
www.sbs.com.au/news/insight...
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
Reposted by Naomi Harvey PhD
Powerful moment at Sir Bob Geldof's event: Belinda & Brooke Nickeas (ME/CFS community) shared a letter outlining the history of ME/CFS. Touched by their courage, he shared these words 💙 On #MECFS Awareness Day, their act is a gift. You are seen. You matter.
May 12, 2025 at 12:31 PM
“This survey aims to collect information from individuals experiencing Long COVID who have had adverse reactions to CT or MRI contrast agents”
Could those who had a bad reaction to contrast fill out this survey? I plan to share it with scientists in the field to help bring attention to the issue.
docs.google.com/forms/d/e/1F...
docs.google.com/forms/d/e/1F...
Adverse Reactions to CT/MRI Contrast in People with Long COVID
This survey aims to collect information from individuals experiencing Long COVID who have had adverse reactions to CT or MRI contrast agents. The goal is to better understand these reactions and contr...
docs.google.com
April 21, 2025 at 6:50 AM
“This survey aims to collect information from individuals experiencing Long COVID who have had adverse reactions to CT or MRI contrast agents”
Reposted by Naomi Harvey PhD
Could those who had a bad reaction to contrast fill out this survey? I plan to share it with scientists in the field to help bring attention to the issue.
docs.google.com/forms/d/e/1F...
docs.google.com/forms/d/e/1F...
Adverse Reactions to CT/MRI Contrast in People with Long COVID
This survey aims to collect information from individuals experiencing Long COVID who have had adverse reactions to CT or MRI contrast agents. The goal is to better understand these reactions and contr...
docs.google.com
April 20, 2025 at 10:59 PM
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 🫂
Reposted by Naomi Harvey PhD
In chronic venous insufficiency, combining oxerutin with Calcium dobesilate, works with oxerutin to further improve venous issues and provide additional symptom relief t.co/hCDg9wak4j
This seems like an excellent drug target for #LongCovid #MEcfs etc @exceedhergrasp1.bsky.social
This seems like an excellent drug target for #LongCovid #MEcfs etc @exceedhergrasp1.bsky.social
https://pubmed.ncbi.nlm.nih.gov/20348452/
t.co
April 12, 2025 at 9:33 AM
In chronic venous insufficiency, combining oxerutin with Calcium dobesilate, works with oxerutin to further improve venous issues and provide additional symptom relief t.co/hCDg9wak4j
This seems like an excellent drug target for #LongCovid #MEcfs etc @exceedhergrasp1.bsky.social
This seems like an excellent drug target for #LongCovid #MEcfs etc @exceedhergrasp1.bsky.social
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.
Reposted by Naomi Harvey PhD
(Worcester, Massachusetts)
Healthy Controls and people aged 12+ with ME/CFS, #POTS, #EDS, long Covid, etc sought for research study
Image is from MassME @massmecfs.bsky.social April Newsletter
www.massmecfs.org/newsletters/...
#MEcfs #LongCovid
Healthy Controls and people aged 12+ with ME/CFS, #POTS, #EDS, long Covid, etc sought for research study
Image is from MassME @massmecfs.bsky.social April Newsletter
www.massmecfs.org/newsletters/...
#MEcfs #LongCovid
April 12, 2025 at 1:29 AM
(Worcester, Massachusetts)
Healthy Controls and people aged 12+ with ME/CFS, #POTS, #EDS, long Covid, etc sought for research study
Image is from MassME @massmecfs.bsky.social April Newsletter
www.massmecfs.org/newsletters/...
#MEcfs #LongCovid
Healthy Controls and people aged 12+ with ME/CFS, #POTS, #EDS, long Covid, etc sought for research study
Image is from MassME @massmecfs.bsky.social April Newsletter
www.massmecfs.org/newsletters/...
#MEcfs #LongCovid