Reposted
#pwME #LongCovid UK 'flu epidemic is here. Get your visitors to mask up. Subsidise them with your own supplies if necessary.
NHS is clueless on immunocompromisation in "post" viral conditions.
Pls share widely.
NHS is clueless on immunocompromisation in "post" viral conditions.
Pls share widely.
December 9, 2025 at 9:55 PM
#pwME #LongCovid UK 'flu epidemic is here. Get your visitors to mask up. Subsidise them with your own supplies if necessary.
NHS is clueless on immunocompromisation in "post" viral conditions.
Pls share widely.
NHS is clueless on immunocompromisation in "post" viral conditions.
Pls share widely.
Reposted
Understanding ME/CFS and Post-Infectious Illnesses
www.youtube.com/watch?v=tKaN...
www.youtube.com/watch?v=tKaN...
Understanding ME/CFS and Post-Infectious Illnesses
YouTube video by Institute for Neuro-Immune Medicine
www.youtube.com
December 9, 2025 at 7:29 PM
Understanding ME/CFS and Post-Infectious Illnesses
www.youtube.com/watch?v=tKaN...
www.youtube.com/watch?v=tKaN...
Reposted
Adam's speech is going to be great. All slots for MSs are booked. There will be large attendance in public gallery.
We're hoping government will respond with announcement.
Wonder if @channel4news.bsky.social interested in covering it.
I'm a member of SMDC if you want more info.
#c4news #MEcfs
We're hoping government will respond with announcement.
Wonder if @channel4news.bsky.social interested in covering it.
I'm a member of SMDC if you want more info.
#c4news #MEcfs
It’s finally here!
@adamprice.bsky.social , MS, will be presenting the debate on Severe / Very Severe ME record.senedd.wales/Motion/8884
Contributions from other Senedd Members make up over half of the hour-long debate.
So - Get your voice heard! 1/3
@adamprice.bsky.social , MS, will be presenting the debate on Severe / Very Severe ME record.senedd.wales/Motion/8884
Contributions from other Senedd Members make up over half of the hour-long debate.
So - Get your voice heard! 1/3
December 9, 2025 at 7:37 PM
Adam's speech is going to be great. All slots for MSs are booked. There will be large attendance in public gallery.
We're hoping government will respond with announcement.
Wonder if @channel4news.bsky.social interested in covering it.
I'm a member of SMDC if you want more info.
#c4news #MEcfs
We're hoping government will respond with announcement.
Wonder if @channel4news.bsky.social interested in covering it.
I'm a member of SMDC if you want more info.
#c4news #MEcfs
Reposted
If you use an alternative device which you'd recommend, please let me know in the comments. Thanks. And please share this post so more people can be aware of this - I only noticed as someone else flagged it yesterday.
December 9, 2025 at 11:20 AM
If you use an alternative device which you'd recommend, please let me know in the comments. Thanks. And please share this post so more people can be aware of this - I only noticed as someone else flagged it yesterday.
Reposted
Several people have contacted Visible directly about this, only for the company to publish an inadequate response. Nobody is asking them to vet every study that comes through. But if one is flagged as dangerous to the community it proclaims to serve, there should be a committment to reviewing it.
December 9, 2025 at 11:20 AM
Several people have contacted Visible directly about this, only for the company to publish an inadequate response. Nobody is asking them to vet every study that comes through. But if one is flagged as dangerous to the community it proclaims to serve, there should be a committment to reviewing it.
Reposted
I am so angry. For two reasons.
1) A new clinical trial has been funded to assess yet another behavioural therapy as a valid treatment for Long Covid.
2) Visible, which many with ME/CFS & LC use, has advertised said study in its app, and also refused to remove it following widespread criticism.
1) A new clinical trial has been funded to assess yet another behavioural therapy as a valid treatment for Long Covid.
2) Visible, which many with ME/CFS & LC use, has advertised said study in its app, and also refused to remove it following widespread criticism.
December 9, 2025 at 11:20 AM
I am so angry. For two reasons.
1) A new clinical trial has been funded to assess yet another behavioural therapy as a valid treatment for Long Covid.
2) Visible, which many with ME/CFS & LC use, has advertised said study in its app, and also refused to remove it following widespread criticism.
1) A new clinical trial has been funded to assess yet another behavioural therapy as a valid treatment for Long Covid.
2) Visible, which many with ME/CFS & LC use, has advertised said study in its app, and also refused to remove it following widespread criticism.
Reposted
I emailed Visible.
They just responded and double downed on their point of these studies passed an institutional review board (IRB)
“At the same time, ethics/IRB review is the only consistent, formal safeguard that exists internationally across trials.”
Laughs in #MECFS
They just responded and double downed on their point of these studies passed an institutional review board (IRB)
“At the same time, ethics/IRB review is the only consistent, formal safeguard that exists internationally across trials.”
Laughs in #MECFS
For context Chalder was one of the primary investigators on the infamous PACE graded exercise therapy trial.
She spent her career focusing on psychosocial factors with #MECFS and believes you can treat it with CBT.
She now has a study on #LongCovid showing up on Visible.
She spent her career focusing on psychosocial factors with #MECFS and believes you can treat it with CBT.
She now has a study on #LongCovid showing up on Visible.
1️⃣ Visible Health has launched a local clinical trial feature. One of the first surfacing to users is an ACT (Acceptance & Commitment Therapy) trial led by Trudie Chalder, a researcher whose work has been highly controversial in ME. This raises important patient-safety concerns.
December 8, 2025 at 6:19 PM
I emailed Visible.
They just responded and double downed on their point of these studies passed an institutional review board (IRB)
“At the same time, ethics/IRB review is the only consistent, formal safeguard that exists internationally across trials.”
Laughs in #MECFS
They just responded and double downed on their point of these studies passed an institutional review board (IRB)
“At the same time, ethics/IRB review is the only consistent, formal safeguard that exists internationally across trials.”
Laughs in #MECFS
Reposted
I did learn CrunchME has a database of trials with the biopsychosocial (BPS) researchers filtered out.
Link to site mentioned in screenshot:
crunchme.notion.site/clinical-tri...
Source for screenshot: x.com/wecrunchme/s...
Link to site mentioned in screenshot:
crunchme.notion.site/clinical-tri...
Source for screenshot: x.com/wecrunchme/s...
December 8, 2025 at 6:39 PM
I did learn CrunchME has a database of trials with the biopsychosocial (BPS) researchers filtered out.
Link to site mentioned in screenshot:
crunchme.notion.site/clinical-tri...
Source for screenshot: x.com/wecrunchme/s...
Link to site mentioned in screenshot:
crunchme.notion.site/clinical-tri...
Source for screenshot: x.com/wecrunchme/s...
Reposted
The German government has committed half a billion euros for research on long COVID and other post-infection syndromes
go.nature.com/48qFiTA
go.nature.com/48qFiTA
Long-COVID research just got a big funding boost: will it find new treatments?
The German government has committed half a billion euros for research on long COVID and other post-infection syndromes.
go.nature.com
December 8, 2025 at 12:11 PM
The German government has committed half a billion euros for research on long COVID and other post-infection syndromes
go.nature.com/48qFiTA
go.nature.com/48qFiTA
Reposted
For context Chalder was one of the primary investigators on the infamous PACE graded exercise therapy trial.
She spent her career focusing on psychosocial factors with #MECFS and believes you can treat it with CBT.
She now has a study on #LongCovid showing up on Visible.
She spent her career focusing on psychosocial factors with #MECFS and believes you can treat it with CBT.
She now has a study on #LongCovid showing up on Visible.
1️⃣ Visible Health has launched a local clinical trial feature. One of the first surfacing to users is an ACT (Acceptance & Commitment Therapy) trial led by Trudie Chalder, a researcher whose work has been highly controversial in ME. This raises important patient-safety concerns.
December 6, 2025 at 8:56 PM
For context Chalder was one of the primary investigators on the infamous PACE graded exercise therapy trial.
She spent her career focusing on psychosocial factors with #MECFS and believes you can treat it with CBT.
She now has a study on #LongCovid showing up on Visible.
She spent her career focusing on psychosocial factors with #MECFS and believes you can treat it with CBT.
She now has a study on #LongCovid showing up on Visible.
Reposted
1) This new study looked at the association between genetics and metabolism in both ME/CFS and controls using the UK Biobank. Several genes (LINC01701, HSD11B1, SCGN, and NLRC5) were significantly associated with metabolic markers in ME/CFS only.
December 6, 2025 at 10:18 AM
1) This new study looked at the association between genetics and metabolism in both ME/CFS and controls using the UK Biobank. Several genes (LINC01701, HSD11B1, SCGN, and NLRC5) were significantly associated with metabolic markers in ME/CFS only.
Reposted
WELL NOW, would you look at that? A massive, 24-YEAR-LONG study of MORE THAN 1.2 MILLION people in Denmark found NO LINK between aluminum in childhood vaccines and autism, asthma, OR chronic disorders.
Aluminum is an ADJUVANT.
It ENHANCES your immune response to a vaccine.
That’s it.
Aluminum is an ADJUVANT.
It ENHANCES your immune response to a vaccine.
That’s it.
December 5, 2025 at 5:00 PM
WELL NOW, would you look at that? A massive, 24-YEAR-LONG study of MORE THAN 1.2 MILLION people in Denmark found NO LINK between aluminum in childhood vaccines and autism, asthma, OR chronic disorders.
Aluminum is an ADJUVANT.
It ENHANCES your immune response to a vaccine.
That’s it.
Aluminum is an ADJUVANT.
It ENHANCES your immune response to a vaccine.
That’s it.
Reposted
Everyone should boycott Eurovision. Make it a one-person show. Israel in an empty room
December 4, 2025 at 6:27 PM
Everyone should boycott Eurovision. Make it a one-person show. Israel in an empty room
Reposted
Fortunately David Lammy you have the chance to vote for a customs union by backing our bill next week.
See you in the Aye lobby?
See you in the Aye lobby?
December 5, 2025 at 9:45 AM
Fortunately David Lammy you have the chance to vote for a customs union by backing our bill next week.
See you in the Aye lobby?
See you in the Aye lobby?
Reposted
“Long COVID had taken hold of my life, and its impact was profound and unrelenting,” - Leslie Lee III
Rest Well.
Rest Well.
Leslie Lee III, an educator, critic, and Long COVID advocate, died on November 10.
“He was one of the few voices in leftist spaces that refused to buy into COVID denialism," Taylor Lorenz told @mileswgriffis.bsky.social. "He was such a strong voice..."
bit.ly/44MICG4
“He was one of the few voices in leftist spaces that refused to buy into COVID denialism," Taylor Lorenz told @mileswgriffis.bsky.social. "He was such a strong voice..."
bit.ly/44MICG4
December 4, 2025 at 7:13 PM
“Long COVID had taken hold of my life, and its impact was profound and unrelenting,” - Leslie Lee III
Rest Well.
Rest Well.
Reposted
"These results confirm that #ME is a deeply polygenic & biologically heterogeneous condition with at least 4 major disease mechanisms implicated by genetic signals
Neurological dysregulation🧠
Inflammation🔥
Cellular stress response⚠️
Calcium signalling🚥"
#pwME
precisionlife.com/news-and-eve...
Neurological dysregulation🧠
Inflammation🔥
Cellular stress response⚠️
Calcium signalling🚥"
#pwME
precisionlife.com/news-and-eve...
The most detailed genetic analysis of myalgic encephalomyelitis ever conducted
Groundbreaking ME study identifies 250+ genes, links with long COVID, and uncovers new drug repurposing opportunities to advance targeted treatments
precisionlife.com
December 4, 2025 at 10:23 AM
"These results confirm that #ME is a deeply polygenic & biologically heterogeneous condition with at least 4 major disease mechanisms implicated by genetic signals
Neurological dysregulation🧠
Inflammation🔥
Cellular stress response⚠️
Calcium signalling🚥"
#pwME
precisionlife.com/news-and-eve...
Neurological dysregulation🧠
Inflammation🔥
Cellular stress response⚠️
Calcium signalling🚥"
#pwME
precisionlife.com/news-and-eve...
Reposted
The HUGE red flag is he's employed Simon Wessely to look into this.
Wessely is a psychologist who's made a career out of gaslighting people with #MECFS, and has never apologised despite research now showing it's a condition with detectable physical bio-markers and gene expression.
Wessely is a psychologist who's made a career out of gaslighting people with #MECFS, and has never apologised despite research now showing it's a condition with detectable physical bio-markers and gene expression.
December 4, 2025 at 7:47 AM
The HUGE red flag is he's employed Simon Wessely to look into this.
Wessely is a psychologist who's made a career out of gaslighting people with #MECFS, and has never apologised despite research now showing it's a condition with detectable physical bio-markers and gene expression.
Wessely is a psychologist who's made a career out of gaslighting people with #MECFS, and has never apologised despite research now showing it's a condition with detectable physical bio-markers and gene expression.
Reposted
One of the people leading this likely farce is Simon Wessley whose previous work includes a reasonably well debunked study of ME which was used to make it harder for sufferers to get support or recognition. Streeting knows exactly what outcome he wants from this
meassociation.org.uk/2018/02/gove....
meassociation.org.uk/2018/02/gove....
Government-funded ME/CFS trial 'one of greatest medical scandals of 21st century' | 20 February 2018 - The ME Association
A controversial medical trial part-funded by the Department of Work of Pensions will emerge as “one of the greatest medical scandals of the 21st century” an MP today claimed.
meassociation.org.uk
December 4, 2025 at 8:13 AM
One of the people leading this likely farce is Simon Wessley whose previous work includes a reasonably well debunked study of ME which was used to make it harder for sufferers to get support or recognition. Streeting knows exactly what outcome he wants from this
meassociation.org.uk/2018/02/gove....
meassociation.org.uk/2018/02/gove....
Reposted
Considering Streeting's well stated belief autism, ADHD etc, along with mental health issues, are "overdiagnosed", I won't hold my breath for this doing anything other than being used to cut support, along with opportunities for diagnosis, for people who need it. #r4today
www.bbc.com/news/article...
www.bbc.com/news/article...
Streeting orders review into mental health and ADHD diagnosis
The health secretary said the aim was to tackle a rising demand for services and the increased pressure on the NHS.
www.bbc.com
December 4, 2025 at 7:12 AM
Considering Streeting's well stated belief autism, ADHD etc, along with mental health issues, are "overdiagnosed", I won't hold my breath for this doing anything other than being used to cut support, along with opportunities for diagnosis, for people who need it. #r4today
www.bbc.com/news/article...
www.bbc.com/news/article...
Reposted
New myalgic encephalomyelitis (ME, also known as ME/CFS) genetics study reveals 250+ core genes, shared mechanisms with long COVID, and dozens of drug repurposing opportunities. This would not have been possible without the thousands of people with ME who contributed their data.
Thank you.
Thank you.
December 4, 2025 at 8:00 AM
New myalgic encephalomyelitis (ME, also known as ME/CFS) genetics study reveals 250+ core genes, shared mechanisms with long COVID, and dozens of drug repurposing opportunities. This would not have been possible without the thousands of people with ME who contributed their data.
Thank you.
Thank you.
Reposted
Delighted how @precisionlife.bsky.social and @actionforme.bsky.social et al used consented @decodemestudy.bsky.social data to
-replicate #MEcfs genetic signal &
-show its shared/distinct genetics with Long Covid.
Next: replicate ME/CFS subtypes w/ targeted therapies
www.medrxiv.org/content/10.6...
-replicate #MEcfs genetic signal &
-show its shared/distinct genetics with Long Covid.
Next: replicate ME/CFS subtypes w/ targeted therapies
www.medrxiv.org/content/10.6...
Identification of Novel Reproducible Combinatorial Genetic Risk Factors for Myalgic Encephalomyelitis in the DecodeME Patient Cohort and Commonalities with Long COVID
Background: Myalgic encephalomyelitis (also known as ME/CFS or simply ME) has severely impacted the lives of tens of millions of people globally, but the disease currently has no accurate diagnostic t...
www.medrxiv.org
December 4, 2025 at 8:13 AM
Delighted how @precisionlife.bsky.social and @actionforme.bsky.social et al used consented @decodemestudy.bsky.social data to
-replicate #MEcfs genetic signal &
-show its shared/distinct genetics with Long Covid.
Next: replicate ME/CFS subtypes w/ targeted therapies
www.medrxiv.org/content/10.6...
-replicate #MEcfs genetic signal &
-show its shared/distinct genetics with Long Covid.
Next: replicate ME/CFS subtypes w/ targeted therapies
www.medrxiv.org/content/10.6...
Reposted
1) 🇳🇱 The funding agency ZonMw has published a new call for ME/CFS research. It focuses on drug repurposing, has a budget of € 3.5 million, and is only open to legal entities in the Netherlands.
The first deadline is 17 March 2026.
The first deadline is 17 March 2026.
December 3, 2025 at 2:22 PM
1) 🇳🇱 The funding agency ZonMw has published a new call for ME/CFS research. It focuses on drug repurposing, has a budget of € 3.5 million, and is only open to legal entities in the Netherlands.
The first deadline is 17 March 2026.
The first deadline is 17 March 2026.
Reposted
I have been in the ME, ME/CFS community a long time. We are a community with big needs but we keep doing our best to show up for another and to grab the attention of the wider world.
These two people have lived with great needs for many years & things are critical.
Share & give if able. #pwME
These two people have lived with great needs for many years & things are critical.
Share & give if able. #pwME
November 30, 2025 at 4:59 AM
I have been in the ME, ME/CFS community a long time. We are a community with big needs but we keep doing our best to show up for another and to grab the attention of the wider world.
These two people have lived with great needs for many years & things are critical.
Share & give if able. #pwME
These two people have lived with great needs for many years & things are critical.
Share & give if able. #pwME
Reposted
November 29, 2025 at 9:12 PM