JayBee
@jaybeechronic.bsky.social
I care deeply about the environment, nature, humanity, health, equality.
Interests: music, science, martial arts.
Currently bedbound.
MECFS
LC
PoTS
MCAS
EDS
Interests: music, science, martial arts.
Currently bedbound.
MECFS
LC
PoTS
MCAS
EDS
Reposted by JayBee
You can see why @zackpolanski.bsky.social Polanski has got the elite panicking.
October 28, 2025 at 4:55 PM
You can see why @zackpolanski.bsky.social Polanski has got the elite panicking.
Reposted by JayBee
September 2, 2025 at 10:45 AM
Reposted by JayBee
Farage: epic grifter
October 27, 2025 at 12:45 PM
Farage: epic grifter
Reposted by JayBee
Bringing back hope.
Leader Zack Polanski makes a powerful case for taxing wealth not work in the Green Party's new party political broadcast.
Leader Zack Polanski makes a powerful case for taxing wealth not work in the Green Party's new party political broadcast.
Let's Make Hope Normal Again - Green Party Political Broadcast
YouTube video by Green Party of England & Wales
youtu.be
October 6, 2025 at 6:11 PM
Bringing back hope.
Leader Zack Polanski makes a powerful case for taxing wealth not work in the Green Party's new party political broadcast.
Leader Zack Polanski makes a powerful case for taxing wealth not work in the Green Party's new party political broadcast.
Reposted by JayBee
To honor #SevereMEDay, each year, #MEAction asks for art submission; this year, over 100 submitted photos, videos, music and other art to #MEAction! A compilation can be found here:
www.youtube.com/watch?v=D-F_...
www.youtube.com/watch?v=D-F_...
Severe ME Artists Project 2025
YouTube video by The ME Action Network
www.youtube.com
August 9, 2025 at 2:13 AM
To honor #SevereMEDay, each year, #MEAction asks for art submission; this year, over 100 submitted photos, videos, music and other art to #MEAction! A compilation can be found here:
www.youtube.com/watch?v=D-F_...
www.youtube.com/watch?v=D-F_...
Reposted by JayBee
Today is #SevereMEDay - a day to recognise and honour the people living with the most devastating forms of Myalgic Encephalomyelitis (ME).
We are deeply grateful to those with Severe ME who took part in the DecodeME study. Your contribution is vital.
We are deeply grateful to those with Severe ME who took part in the DecodeME study. Your contribution is vital.
August 8, 2025 at 11:18 AM
Today is #SevereMEDay - a day to recognise and honour the people living with the most devastating forms of Myalgic Encephalomyelitis (ME).
We are deeply grateful to those with Severe ME who took part in the DecodeME study. Your contribution is vital.
We are deeply grateful to those with Severe ME who took part in the DecodeME study. Your contribution is vital.
On #SevereMEDay I'm thinking of you all 🙏
As someone who is currently suffering with #SevereME since 2022 & has also been bedbound since then, I understand how much this illness takes from you 🥺💙
So I'm sending love & hope to you all 🫂✨️
#UnitedForMe #millionsmissing #MECFS #SevereMEAwarenessDay
As someone who is currently suffering with #SevereME since 2022 & has also been bedbound since then, I understand how much this illness takes from you 🥺💙
So I'm sending love & hope to you all 🫂✨️
#UnitedForMe #millionsmissing #MECFS #SevereMEAwarenessDay
August 8, 2025 at 12:03 PM
On #SevereMEDay I'm thinking of you all 🙏
As someone who is currently suffering with #SevereME since 2022 & has also been bedbound since then, I understand how much this illness takes from you 🥺💙
So I'm sending love & hope to you all 🫂✨️
#UnitedForMe #millionsmissing #MECFS #SevereMEAwarenessDay
As someone who is currently suffering with #SevereME since 2022 & has also been bedbound since then, I understand how much this illness takes from you 🥺💙
So I'm sending love & hope to you all 🫂✨️
#UnitedForMe #millionsmissing #MECFS #SevereMEAwarenessDay
Reposted by JayBee
Community video for Severe ME awareness day, please share and tag politicians and public figures who need to see this!
All participants IG handles tagged at the end 💙💙
#SevereME #SevereMEAwarenessDay #MECFS #MillionsMissing #UnitedForME
All participants IG handles tagged at the end 💙💙
#SevereME #SevereMEAwarenessDay #MECFS #MillionsMissing #UnitedForME
August 8, 2025 at 10:15 AM
Community video for Severe ME awareness day, please share and tag politicians and public figures who need to see this!
All participants IG handles tagged at the end 💙💙
#SevereME #SevereMEAwarenessDay #MECFS #MillionsMissing #UnitedForME
All participants IG handles tagged at the end 💙💙
#SevereME #SevereMEAwarenessDay #MECFS #MillionsMissing #UnitedForME
Reposted by JayBee
Acknowledging #SevereME Day with Emerge Australia & World ME Alliance. We urge community to share their video, shining light on the everyday struggle.
August 7, 2025 at 10:00 PM
Acknowledging #SevereME Day with Emerge Australia & World ME Alliance. We urge community to share their video, shining light on the everyday struggle.
Reposted by JayBee
In honor of #SevereMEday, @meactnet.bsky.social @batemanhornecenter.bsky.social @solveme.bsky.social @openmedf.bsky.social would like to announce a new hashtag that we will be using to help amplify the voices of those with ME & educate about ME. We invite you to join us in using #UnitedForME!
August 7, 2025 at 1:21 PM
In honor of #SevereMEday, @meactnet.bsky.social @batemanhornecenter.bsky.social @solveme.bsky.social @openmedf.bsky.social would like to announce a new hashtag that we will be using to help amplify the voices of those with ME & educate about ME. We invite you to join us in using #UnitedForME!
Reposted by JayBee
Sign and share Dill’s petition 👇
www.change.org/p/the-nhs-mu...
#SevereMEDay #SevereME #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis
www.change.org/p/the-nhs-mu...
#SevereMEDay #SevereME #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis
August 8, 2025 at 9:00 AM
Sign and share Dill’s petition 👇
www.change.org/p/the-nhs-mu...
#SevereMEDay #SevereME #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis
www.change.org/p/the-nhs-mu...
#SevereMEDay #SevereME #MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis
Reposted by JayBee
We have signed the petitions calling for appropriate care and support for Savannah and Dill and kindly ask you to do so too 🧡
Sign and share Savannah’s petition 👇
www.change.org/p/save-savan...
Sign and share Savannah’s petition 👇
www.change.org/p/save-savan...
August 8, 2025 at 9:00 AM
We have signed the petitions calling for appropriate care and support for Savannah and Dill and kindly ask you to do so too 🧡
Sign and share Savannah’s petition 👇
www.change.org/p/save-savan...
Sign and share Savannah’s petition 👇
www.change.org/p/save-savan...
Reposted by JayBee
Today is #SevereMEDay.
For too long, people with severe ME who are in hospital are often unable to access the appropriate care and support that they need.
They so often face misunderstanding and stigma from healthcare professionals, which has a devastating and dangerous impact on their lives.
For too long, people with severe ME who are in hospital are often unable to access the appropriate care and support that they need.
They so often face misunderstanding and stigma from healthcare professionals, which has a devastating and dangerous impact on their lives.
August 8, 2025 at 9:00 AM
Today is #SevereMEDay.
For too long, people with severe ME who are in hospital are often unable to access the appropriate care and support that they need.
They so often face misunderstanding and stigma from healthcare professionals, which has a devastating and dangerous impact on their lives.
For too long, people with severe ME who are in hospital are often unable to access the appropriate care and support that they need.
They so often face misunderstanding and stigma from healthcare professionals, which has a devastating and dangerous impact on their lives.
Reposted by JayBee
1) The DecodeME study compared DNA of ca. 15,000 ME/CFS patients and 250,000 controls and found significant differences in 8 regions of our genome.
The Manhattan plot below shows the genes and chromosomes involved.
Let’s unpack the results 🧵
The Manhattan plot below shows the genes and chromosomes involved.
Let’s unpack the results 🧵
August 7, 2025 at 8:05 AM
1) The DecodeME study compared DNA of ca. 15,000 ME/CFS patients and 250,000 controls and found significant differences in 8 regions of our genome.
The Manhattan plot below shows the genes and chromosomes involved.
Let’s unpack the results 🧵
The Manhattan plot below shows the genes and chromosomes involved.
Let’s unpack the results 🧵
Reposted by JayBee
Clip: BBC Scotland - Professor Chris Ponting explains why large-scale genetic research into #MECFS didn’t happen sooner — despite its prevalence. He says the field was “hugely stigmatized” and “held back… in part because this disease is very strongly female biased.
August 7, 2025 at 10:05 AM
Clip: BBC Scotland - Professor Chris Ponting explains why large-scale genetic research into #MECFS didn’t happen sooner — despite its prevalence. He says the field was “hugely stigmatized” and “held back… in part because this disease is very strongly female biased.
Reposted by JayBee
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 8:53 AM
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.
Reposted by JayBee
Clip: Amanda tells BBC Reporting Scotland she’s had #MECFS since age 19 and had to give up much of her life. With no specialist care in Scotland, she says patients are left to self-manage symptoms without treatment or support.
August 7, 2025 at 8:18 AM
Clip: Amanda tells BBC Reporting Scotland she’s had #MECFS since age 19 and had to give up much of her life. With no specialist care in Scotland, she says patients are left to self-manage symptoms without treatment or support.
Reposted by JayBee
'Each genetic signal is like an ‘X’ on a treasure map indicating roughly where the researchers should dig for treasure.'
Check out Simon McGrath’s blog to learn about the science behind the initial results: shorturl.at/hadjF
Check out Simon McGrath’s blog to learn about the science behind the initial results: shorturl.at/hadjF
August 7, 2025 at 4:23 PM
'Each genetic signal is like an ‘X’ on a treasure map indicating roughly where the researchers should dig for treasure.'
Check out Simon McGrath’s blog to learn about the science behind the initial results: shorturl.at/hadjF
Check out Simon McGrath’s blog to learn about the science behind the initial results: shorturl.at/hadjF
Reposted by JayBee
The Management Team are delighted to announce DecodeME’s initial DNA results & discuss what this means for #pwME & future research.
A huge thanks to all our participants for giving their time, energy & DNA to the project.
Learn more about our findings: shorturl.at/XOVJ1
A huge thanks to all our participants for giving their time, energy & DNA to the project.
Learn more about our findings: shorturl.at/XOVJ1
August 7, 2025 at 9:20 AM
The Management Team are delighted to announce DecodeME’s initial DNA results & discuss what this means for #pwME & future research.
A huge thanks to all our participants for giving their time, energy & DNA to the project.
Learn more about our findings: shorturl.at/XOVJ1
A huge thanks to all our participants for giving their time, energy & DNA to the project.
Learn more about our findings: shorturl.at/XOVJ1
Reposted by JayBee
Scientists find link between genes and ME/chronic fatigue syndrome
Scientists find link between genes and ME/chronic fatigue syndrome
Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness
Scientists have found the first robust evidence that people’s genes affect their chances of developing myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a mysterious and debilitating illness that has been neglected and dismissed for decades by many in the medical community.
Early findings from the world’s largest study into the genetics of the condition pinpointed eight regions of the human genome that were substantially different in people with an ME/CFS diagnosis compared to those without the illness. Continue reading...
www.theguardian.com
August 6, 2025 at 6:15 PM
Scientists find link between genes and ME/chronic fatigue syndrome
Reposted by JayBee
(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more.
These findings reflect the lived experience of thousands of #pwME.
Thanks to all our participants & supporters who made this possible!
Read a summary of our results: shorturl.at/pgsjk
These findings reflect the lived experience of thousands of #pwME.
Thanks to all our participants & supporters who made this possible!
Read a summary of our results: shorturl.at/pgsjk
August 6, 2025 at 7:03 PM
(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more.
These findings reflect the lived experience of thousands of #pwME.
Thanks to all our participants & supporters who made this possible!
Read a summary of our results: shorturl.at/pgsjk
These findings reflect the lived experience of thousands of #pwME.
Thanks to all our participants & supporters who made this possible!
Read a summary of our results: shorturl.at/pgsjk
Reposted by JayBee
Clip: Channel 4 News, Prof Chris Ponting tells a participant that the DecodeME study found eight genetic differences in people with MECFS — demonstrating that it’s a biological, organic illness.
August 6, 2025 at 6:35 PM
Clip: Channel 4 News, Prof Chris Ponting tells a participant that the DecodeME study found eight genetic differences in people with MECFS — demonstrating that it’s a biological, organic illness.
Reposted by JayBee
Clip: Channel 4 News revisits the case of Maeve Boothby O’Neill, who died from malnutrition caused by severe ME. The segment includes reaction to DecodeME’s genetic findings from Sonia Chowdhury of Action for ME and a patient participant. #MECFS
August 6, 2025 at 6:59 PM
Clip: Channel 4 News revisits the case of Maeve Boothby O’Neill, who died from malnutrition caused by severe ME. The segment includes reaction to DecodeME’s genetic findings from Sonia Chowdhury of Action for ME and a patient participant. #MECFS
Reposted by JayBee
Clip: Tessa Munt MP reacts to the DecodeME results on Channel 4 News, calling them “fantastic” and “clear medical evidence” after decades of patients being treated poorly. She also says the government’s #MECFS delivery plan has been “a bit of a flop”.
August 6, 2025 at 9:13 PM
Clip: Tessa Munt MP reacts to the DecodeME results on Channel 4 News, calling them “fantastic” and “clear medical evidence” after decades of patients being treated poorly. She also says the government’s #MECFS delivery plan has been “a bit of a flop”.
Reposted by JayBee
Clip: Tessa Munt MP tells Channel 4 News the government must fund #MECFS research. She says DecodeME proves it’s “not a made-up disease” — and that with recognition, if patients are not dismissed or treated like idiots, we will be a lot further forward.
August 6, 2025 at 9:15 PM
Clip: Tessa Munt MP tells Channel 4 News the government must fund #MECFS research. She says DecodeME proves it’s “not a made-up disease” — and that with recognition, if patients are not dismissed or treated like idiots, we will be a lot further forward.