Live in Wales? Want to know what new Welsh Gov-funded ME & Long Covid services offer locally?
Join ME Voices Wales’ webinar, Fri 2 Oct, 12.30–1.30pm.
Swansea Bay UHB’s team will present and answer questions. All Wales welcome!
Register: https://tinyurl.com/2rz2cupc
@wamesmecfs.bsky.social #pwME
Join ME Voices Wales’ webinar, Fri 2 Oct, 12.30–1.30pm.
Swansea Bay UHB’s team will present and answer questions. All Wales welcome!
Register: https://tinyurl.com/2rz2cupc
@wamesmecfs.bsky.social #pwME
September 29, 2026 at 2:14 PM
Live in Wales? Want to know what new Welsh Gov-funded ME & Long Covid services offer locally?
Join ME Voices Wales’ webinar, Fri 2 Oct, 12.30–1.30pm.
Swansea Bay UHB’s team will present and answer questions. All Wales welcome!
Register: https://tinyurl.com/2rz2cupc
@wamesmecfs.bsky.social #pwME
Join ME Voices Wales’ webinar, Fri 2 Oct, 12.30–1.30pm.
Swansea Bay UHB’s team will present and answer questions. All Wales welcome!
Register: https://tinyurl.com/2rz2cupc
@wamesmecfs.bsky.social #pwME
"Still blow gently on embers" - that's an excellent image for keeping hope alive...
May we all have relief from this horror soon. Imagine the world we could build if all pwME lived with the the strength of tall flames instead of flickering embers.
May we all have relief from this horror soon. Imagine the world we could build if all pwME lived with the the strength of tall flames instead of flickering embers.
September 29, 2026 at 2:14 PM
"Still blow gently on embers" - that's an excellent image for keeping hope alive...
May we all have relief from this horror soon. Imagine the world we could build if all pwME lived with the the strength of tall flames instead of flickering embers.
May we all have relief from this horror soon. Imagine the world we could build if all pwME lived with the the strength of tall flames instead of flickering embers.
𝗦𝗶𝗲𝗯𝗿𝗲𝗻 𝗶𝗻 𝗟𝗲𝗲𝘀 𝗠𝗘 𝟱𝟲 𝗼𝘃𝗲𝗿 𝗲𝗲𝗻 𝗽𝗮𝗿𝘁𝗻𝗲𝗿 𝗺𝗲𝘁 𝗠𝗘/𝗰𝘃𝘀
‘𝘉𝘭𝘪𝘫𝘧 𝘦𝘦𝘳𝘭𝘪𝘫𝘬, 𝘨𝘦𝘦𝘧 𝘦𝘯 𝘯𝘦𝘦𝘮, 𝘻𝘰𝘳𝘨 𝘷𝘰𝘰𝘳 𝘣𝘢𝘭𝘢𝘯𝘴 𝘦𝘯 𝘻𝘰𝘳𝘨 𝘷𝘰𝘰𝘳 𝘫𝘦𝘻𝘦𝘭𝘧. 𝘏𝘦𝘵 𝘪𝘴 𝘯𝘪𝘦𝘵 𝘦𝘳𝘨 𝘰𝘮 𝘦𝘳 𝘦𝘷𝘦𝘯 𝘵𝘶𝘴𝘴𝘦𝘯𝘶𝘪𝘵 𝘵𝘦 𝘸𝘪𝘭𝘭𝘦𝘯.’
‘𝘉𝘭𝘪𝘫𝘧 𝘦𝘦𝘳𝘭𝘪𝘫𝘬, 𝘨𝘦𝘦𝘧 𝘦𝘯 𝘯𝘦𝘦𝘮, 𝘻𝘰𝘳𝘨 𝘷𝘰𝘰𝘳 𝘣𝘢𝘭𝘢𝘯𝘴 𝘦𝘯 𝘻𝘰𝘳𝘨 𝘷𝘰𝘰𝘳 𝘫𝘦𝘻𝘦𝘭𝘧. 𝘏𝘦𝘵 𝘪𝘴 𝘯𝘪𝘦𝘵 𝘦𝘳𝘨 𝘰𝘮 𝘦𝘳 𝘦𝘷𝘦𝘯 𝘵𝘶𝘴𝘴𝘦𝘯𝘶𝘪𝘵 𝘵𝘦 𝘸𝘪𝘭𝘭𝘦𝘯.’
September 29, 2026 at 12:03 PM
𝗦𝗶𝗲𝗯𝗿𝗲𝗻 𝗶𝗻 𝗟𝗲𝗲𝘀 𝗠𝗘 𝟱𝟲 𝗼𝘃𝗲𝗿 𝗲𝗲𝗻 𝗽𝗮𝗿𝘁𝗻𝗲𝗿 𝗺𝗲𝘁 𝗠𝗘/𝗰𝘃𝘀
‘𝘉𝘭𝘪𝘫𝘧 𝘦𝘦𝘳𝘭𝘪𝘫𝘬, 𝘨𝘦𝘦𝘧 𝘦𝘯 𝘯𝘦𝘦𝘮, 𝘻𝘰𝘳𝘨 𝘷𝘰𝘰𝘳 𝘣𝘢𝘭𝘢𝘯𝘴 𝘦𝘯 𝘻𝘰𝘳𝘨 𝘷𝘰𝘰𝘳 𝘫𝘦𝘻𝘦𝘭𝘧. 𝘏𝘦𝘵 𝘪𝘴 𝘯𝘪𝘦𝘵 𝘦𝘳𝘨 𝘰𝘮 𝘦𝘳 𝘦𝘷𝘦𝘯 𝘵𝘶𝘴𝘴𝘦𝘯𝘶𝘪𝘵 𝘵𝘦 𝘸𝘪𝘭𝘭𝘦𝘯.’
‘𝘉𝘭𝘪𝘫𝘧 𝘦𝘦𝘳𝘭𝘪𝘫𝘬, 𝘨𝘦𝘦𝘧 𝘦𝘯 𝘯𝘦𝘦𝘮, 𝘻𝘰𝘳𝘨 𝘷𝘰𝘰𝘳 𝘣𝘢𝘭𝘢𝘯𝘴 𝘦𝘯 𝘻𝘰𝘳𝘨 𝘷𝘰𝘰𝘳 𝘫𝘦𝘻𝘦𝘭𝘧. 𝘏𝘦𝘵 𝘪𝘴 𝘯𝘪𝘦𝘵 𝘦𝘳𝘨 𝘰𝘮 𝘦𝘳 𝘦𝘷𝘦𝘯 𝘵𝘶𝘴𝘴𝘦𝘯𝘶𝘪𝘵 𝘵𝘦 𝘸𝘪𝘭𝘭𝘦𝘯.’
I share your view that CFS and #ME are not the same illness and that it’s likely the CFS of MH does respond to GET and CBT
My POV is based on the many articles by the Wessely group who conflated #ME and CFS from the late 1980s - see attached - and imposed GET onto #pwME w disastrous effects
My POV is based on the many articles by the Wessely group who conflated #ME and CFS from the late 1980s - see attached - and imposed GET onto #pwME w disastrous effects
September 29, 2026 at 11:49 AM
The Royal Colleges' quibble was about 'Encephalomyelitis' being a misnomer. @meassociation.org.uk medic agreed.
One trouble is, #pwME are too unwell to advocate for themselves, only making themselves more unwell when they try.
Few institutions are able to adjust for this type of disability.
One trouble is, #pwME are too unwell to advocate for themselves, only making themselves more unwell when they try.
Few institutions are able to adjust for this type of disability.
September 29, 2026 at 11:45 AM
The Royal Colleges' quibble was about 'Encephalomyelitis' being a misnomer. @meassociation.org.uk medic agreed.
One trouble is, #pwME are too unwell to advocate for themselves, only making themselves more unwell when they try.
Few institutions are able to adjust for this type of disability.
One trouble is, #pwME are too unwell to advocate for themselves, only making themselves more unwell when they try.
Few institutions are able to adjust for this type of disability.
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2
www.theguardian.com/commentisfre...
www.theguardian.com/commentisfre...
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
www.theguardian.com
September 29, 2026 at 11:20 AM
Rob Wust (Amsterdam) shows that #pwME and #pwLC (all with PEM) *perfectly* separate from healthy controls with respect to their muscle microvasculature radius. Lower lumen radius in ME/LC. Needs replication, but this muscle biopsy metric has high diagnostic potential.
#MEcfs #PRIME26 #LongCovid
#MEcfs #PRIME26 #LongCovid
September 29, 2026 at 10:41 AM
Rob Wust (Amsterdam) shows that #pwME and #pwLC (all with PEM) *perfectly* separate from healthy controls with respect to their muscle microvasculature radius. Lower lumen radius in ME/LC. Needs replication, but this muscle biopsy metric has high diagnostic potential.
#MEcfs #PRIME26 #LongCovid
#MEcfs #PRIME26 #LongCovid
Still very tired today, but pleased to have made it out to my gate to look at my #MorningView.
I think I'm going to make sending out this post, my One Thing for today.
Wishing you as gentle a day as you need ❤️🐌
#MECFS #pwME #Wales #CreativeHabit
I think I'm going to make sending out this post, my One Thing for today.
Wishing you as gentle a day as you need ❤️🐌
#MECFS #pwME #Wales #CreativeHabit
September 29, 2026 at 9:12 AM
Still very tired today, but pleased to have made it out to my gate to look at my #MorningView.
I think I'm going to make sending out this post, my One Thing for today.
Wishing you as gentle a day as you need ❤️🐌
#MECFS #pwME #Wales #CreativeHabit
I think I'm going to make sending out this post, my One Thing for today.
Wishing you as gentle a day as you need ❤️🐌
#MECFS #pwME #Wales #CreativeHabit
Dr Katharine Cheston on the @actionforme.bsky.social 2025 Big Survey Results. 5,424 people, 85.1% female; 18.4% v/severe. She is "shocked and appalled" by the data: by people's experience living with #MEcfs. Headline results will be released later in 2026.
#pwME #PRIME26
#pwME #PRIME26
September 29, 2026 at 8:48 AM
Dr Katharine Cheston on the @actionforme.bsky.social 2025 Big Survey Results. 5,424 people, 85.1% female; 18.4% v/severe. She is "shocked and appalled" by the data: by people's experience living with #MEcfs. Headline results will be released later in 2026.
#pwME #PRIME26
#pwME #PRIME26
🧵 youtu.be/UOebalbIOaY?...
Nancy Klimas, who has been treating pwME for decades, summarises Ron Davis' team's hypothesis very succinctly. There is a flaw. Homeostasis is not established at a dysfunctional level. People survive #ME if they are lucky enough to have the support they need (like
1/5
Nancy Klimas, who has been treating pwME for decades, summarises Ron Davis' team's hypothesis very succinctly. There is a flaw. Homeostasis is not established at a dysfunctional level. People survive #ME if they are lucky enough to have the support they need (like
1/5
Nancy Klimas, MD, Nova Southeastern University
YouTube video by MECFS Collaborative Research Center at Stanford
youtu.be
September 29, 2026 at 7:19 AM
🧵 youtu.be/UOebalbIOaY?...
Nancy Klimas, who has been treating pwME for decades, summarises Ron Davis' team's hypothesis very succinctly. There is a flaw. Homeostasis is not established at a dysfunctional level. People survive #ME if they are lucky enough to have the support they need (like
1/5
Nancy Klimas, who has been treating pwME for decades, summarises Ron Davis' team's hypothesis very succinctly. There is a flaw. Homeostasis is not established at a dysfunctional level. People survive #ME if they are lucky enough to have the support they need (like
1/5
From the US
Hemodynamic Phenotyping in ME/CFS & ANOCA [Angina with Non-Obstructive Coronary Arteries]: Complementary Insights from Coronary Function Testing & Invasive Cardiopulmonary Exercise Testing
journals.physiology.org/doi/10.1152/...
Screenshot from Science for ME update
#MEcfs #PwME #CFS
Hemodynamic Phenotyping in ME/CFS & ANOCA [Angina with Non-Obstructive Coronary Arteries]: Complementary Insights from Coronary Function Testing & Invasive Cardiopulmonary Exercise Testing
journals.physiology.org/doi/10.1152/...
Screenshot from Science for ME update
#MEcfs #PwME #CFS
September 29, 2026 at 12:25 AM
From the US
Hemodynamic Phenotyping in ME/CFS & ANOCA [Angina with Non-Obstructive Coronary Arteries]: Complementary Insights from Coronary Function Testing & Invasive Cardiopulmonary Exercise Testing
journals.physiology.org/doi/10.1152/...
Screenshot from Science for ME update
#MEcfs #PwME #CFS
Hemodynamic Phenotyping in ME/CFS & ANOCA [Angina with Non-Obstructive Coronary Arteries]: Complementary Insights from Coronary Function Testing & Invasive Cardiopulmonary Exercise Testing
journals.physiology.org/doi/10.1152/...
Screenshot from Science for ME update
#MEcfs #PwME #CFS
Emerge Australia @emergeaustralia.bsky.social has posted a copy of an article published by The Australian
emerge.org.au/news/the-aus...
www.theaustralian.com.au/commentary/6...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME #CFS
emerge.org.au/news/the-aus...
www.theaustralian.com.au/commentary/6...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME #CFS
September 29, 2026 at 12:15 AM
Emerge Australia @emergeaustralia.bsky.social has posted a copy of an article published by The Australian
emerge.org.au/news/the-aus...
www.theaustralian.com.au/commentary/6...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME #CFS
emerge.org.au/news/the-aus...
www.theaustralian.com.au/commentary/6...
Screenshot from latest Science for ME weekly update
#MEcfs #PwME #CFS
Almost nine out of ten people with #LongCovid do not fully recover from their symptoms. They have to learn to live with them.
This is shown in a study by researchers from Frisius MC and the UMCG in Groningen. For the study, 1,200 people were followed over the past three years.
#PAIS #pwme
This is shown in a study by researchers from Frisius MC and the UMCG in Groningen. For the study, 1,200 people were followed over the past three years.
#PAIS #pwme
September 28, 2026 at 8:21 PM
Almost nine out of ten people with #LongCovid do not fully recover from their symptoms. They have to learn to live with them.
This is shown in a study by researchers from Frisius MC and the UMCG in Groningen. For the study, 1,200 people were followed over the past three years.
#PAIS #pwme
This is shown in a study by researchers from Frisius MC and the UMCG in Groningen. For the study, 1,200 people were followed over the past three years.
#PAIS #pwme
Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2
www.theguardian.com/commentisfre...
www.theguardian.com/commentisfre...
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
www.theguardian.com
September 28, 2026 at 6:31 PM
It doesn't get easier, being so completely dependent on others for one's survival after losing one's health & independence.
I'm endlessly grateful to family & friends but I so wish they were spared the impact of this terrible illness.
💙
#ME #pwME #GreatestMedicalScandal
I'm endlessly grateful to family & friends but I so wish they were spared the impact of this terrible illness.
💙
#ME #pwME #GreatestMedicalScandal
September 28, 2026 at 3:49 PM
It doesn't get easier, being so completely dependent on others for one's survival after losing one's health & independence.
I'm endlessly grateful to family & friends but I so wish they were spared the impact of this terrible illness.
💙
#ME #pwME #GreatestMedicalScandal
I'm endlessly grateful to family & friends but I so wish they were spared the impact of this terrible illness.
💙
#ME #pwME #GreatestMedicalScandal
As a pwME I’d like Dr. Hans Kluge
to be the next director
Why This Work Matter?
@investinmeresearch.bsky.social
@europeanmealliance.bsky.social @emec.bsky.social @youngemerg.bsky.social
to be the next director
Why This Work Matter?
@investinmeresearch.bsky.social
@europeanmealliance.bsky.social @emec.bsky.social @youngemerg.bsky.social
Why This Work Matters
YouTube video by InvestinME Research
youtu.be
September 28, 2026 at 2:42 PM
As a pwME I’d like Dr. Hans Kluge
to be the next director
Why This Work Matter?
@investinmeresearch.bsky.social
@europeanmealliance.bsky.social @emec.bsky.social @youngemerg.bsky.social
to be the next director
Why This Work Matter?
@investinmeresearch.bsky.social
@europeanmealliance.bsky.social @emec.bsky.social @youngemerg.bsky.social
#pwME high time there was mandatory education on #ME/CFS for all patient facing NHS staff.
Please sign and share!
Please sign and share!
Make ME/CFS learning mandatory for NHS staff - Sign the Petition! c.org/JWKBhpJChX #MECFS
Sign the Petition
Make ME/CFS learning mandatory for NHS staff
c.org
September 28, 2026 at 2:38 PM
Medical Matters: Sleep Apnoea
Q: What are the symptoms of Sleep Apnoea, does it have any similarities to ME/CFS, and how might it be treated?
A: https://meassociation.org.uk/medical-matters/items/sleep-apnoea/
#pwME #MECFS #Sleep
Q: What are the symptoms of Sleep Apnoea, does it have any similarities to ME/CFS, and how might it be treated?
A: https://meassociation.org.uk/medical-matters/items/sleep-apnoea/
#pwME #MECFS #Sleep
September 28, 2026 at 2:31 PM
Medical Matters: Sleep Apnoea
Q: What are the symptoms of Sleep Apnoea, does it have any similarities to ME/CFS, and how might it be treated?
A: https://meassociation.org.uk/medical-matters/items/sleep-apnoea/
#pwME #MECFS #Sleep
Q: What are the symptoms of Sleep Apnoea, does it have any similarities to ME/CFS, and how might it be treated?
A: https://meassociation.org.uk/medical-matters/items/sleep-apnoea/
#pwME #MECFS #Sleep
We’ve been stuck here 363 days. I’m too run down to say anything more than HELP 😿
Ways to(not only donating)
Art: donialilly.com
V: venmo.com/u/Donia-Lilly
PP: paypal.me/donialilly
eBay: ebay.com/usr/island_art
#Homeless
#HelpFolksLive #MAboost #Disability #CatSky #HelpSky
#pwME #MutualAidMonday 💸💕
Ways to(not only donating)
Art: donialilly.com
V: venmo.com/u/Donia-Lilly
PP: paypal.me/donialilly
eBay: ebay.com/usr/island_art
#Homeless
#HelpFolksLive #MAboost #Disability #CatSky #HelpSky
#pwME #MutualAidMonday 💸💕
September 28, 2026 at 11:57 AM
We’ve been stuck here 363 days. I’m too run down to say anything more than HELP 😿
Ways to(not only donating)
Art: donialilly.com
V: venmo.com/u/Donia-Lilly
PP: paypal.me/donialilly
eBay: ebay.com/usr/island_art
#Homeless
#HelpFolksLive #MAboost #Disability #CatSky #HelpSky
#pwME #MutualAidMonday 💸💕
Ways to(not only donating)
Art: donialilly.com
V: venmo.com/u/Donia-Lilly
PP: paypal.me/donialilly
eBay: ebay.com/usr/island_art
#Homeless
#HelpFolksLive #MAboost #Disability #CatSky #HelpSky
#pwME #MutualAidMonday 💸💕
Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon.bsky.social on Wednesday, September 30
Hopefully we’ll see some of you there
irishmecfs.org/blog/wednesd...
Carers/parents/similar welcome.
#MEcfs #PwME
Hopefully we’ll see some of you there
irishmecfs.org/blog/wednesd...
Carers/parents/similar welcome.
#MEcfs #PwME
September 28, 2026 at 11:37 AM
It can also make people push in order to try and recover, which is actively bad for us and can cause PEM, which in turn can cause permanent worsening (again, this is the norm, 67% of pwME have had a PEM episode they didn't recover from, leading to a lower baseline and more suffering.
September 28, 2026 at 11:27 AM
It can also make people push in order to try and recover, which is actively bad for us and can cause PEM, which in turn can cause permanent worsening (again, this is the norm, 67% of pwME have had a PEM episode they didn't recover from, leading to a lower baseline and more suffering.
And frankly I think the focus on recovery is harmful for pwME when only ~5% of us end up in remission.
It sets a false expectation that can make people feel like they're failing because they're not recovering, when that is just the lived reality of ME/CFS.
It sets a false expectation that can make people feel like they're failing because they're not recovering, when that is just the lived reality of ME/CFS.
September 28, 2026 at 11:27 AM
And frankly I think the focus on recovery is harmful for pwME when only ~5% of us end up in remission.
It sets a false expectation that can make people feel like they're failing because they're not recovering, when that is just the lived reality of ME/CFS.
It sets a false expectation that can make people feel like they're failing because they're not recovering, when that is just the lived reality of ME/CFS.
I’m starting the week feeling very tired, but was cheered by today’s #MorningView.
I hope your week is starting well and that you can give yourself the week you need.
Go gently ❤️🐌
#MECFS #pwME #Wales #CreativeHabit
I hope your week is starting well and that you can give yourself the week you need.
Go gently ❤️🐌
#MECFS #pwME #Wales #CreativeHabit
September 28, 2026 at 11:19 AM
I’m starting the week feeling very tired, but was cheered by today’s #MorningView.
I hope your week is starting well and that you can give yourself the week you need.
Go gently ❤️🐌
#MECFS #pwME #Wales #CreativeHabit
I hope your week is starting well and that you can give yourself the week you need.
Go gently ❤️🐌
#MECFS #pwME #Wales #CreativeHabit