@wamesmecfs.bsky.social
Yanto Evans from S. Wales assesses impact of long COVID on Wales. "There are currently no efforts to count those living with Long Covid (or indeed ME) in Wales. In last Winter Covid Infection Study by ONS in March 2024 Wales opted not to take part..."
www.thereforme.uk/p/still-here
www.thereforme.uk/p/still-here
Still here
An update on the Covid pandemic from across the bridge
www.thereforme.uk
November 18, 2025 at 12:48 PM
Yanto Evans from S. Wales assesses impact of long COVID on Wales. "There are currently no efforts to count those living with Long Covid (or indeed ME) in Wales. In last Winter Covid Infection Study by ONS in March 2024 Wales opted not to take part..."
www.thereforme.uk/p/still-here
www.thereforme.uk/p/still-here
Dr Vanessa Velasco talks about Neutrophils, a group of white blood cells, and their behaviour in ME/CFS [18 mins] +Transcript
www.youtube.com/watch?v=n0PX...
www.youtube.com/watch?v=n0PX...
www.youtube.com
November 18, 2025 at 12:38 PM
Dr Vanessa Velasco talks about Neutrophils, a group of white blood cells, and their behaviour in ME/CFS [18 mins] +Transcript
www.youtube.com/watch?v=n0PX...
www.youtube.com/watch?v=n0PX...
A new research report finds current UC sanctions system fails on its own terms, is disproportionately severe & doesn't prevent inappropriate sanctions. Also >4 in 5 cases (86%) supported to appeal were decided in favour of person sanctioned. www.disabilityrightsuk.org/news/sanctio...
Sanctionable Failures: Universal Credit’s Failing Sanctions Regime
www.disabilityrightsuk.org
November 18, 2025 at 12:37 PM
A new research report finds current UC sanctions system fails on its own terms, is disproportionately severe & doesn't prevent inappropriate sanctions. Also >4 in 5 cases (86%) supported to appeal were decided in favour of person sanctioned. www.disabilityrightsuk.org/news/sanctio...
MERUK reports on 500mil Euro research boost for post-infectious diseases in Germany. They're seen as “one of greatest public health challenges of 21st century.” Goal must be... that they (ME/CFS and Long-COVID) can be cured by the mid-2030s at the latest."
www.meresearch.org.uk/german-500-m...
www.meresearch.org.uk/german-500-m...
German 500 million Euro research boost fpr post-infectiuous diseases
German ME/CFS research funding half billion euros
www.meresearch.org.uk
November 18, 2025 at 12:31 PM
MERUK reports on 500mil Euro research boost for post-infectious diseases in Germany. They're seen as “one of greatest public health challenges of 21st century.” Goal must be... that they (ME/CFS and Long-COVID) can be cured by the mid-2030s at the latest."
www.meresearch.org.uk/german-500-m...
www.meresearch.org.uk/german-500-m...
Welsh Senedd Debate on ME/CFS is postponed again! Now 10 Dec. Debate on Motion 8884 to be led by Adam Price, MS. With Senedd elections approaching fast, now is a good time to enlist your MS's support – because they also want yours! More info
tinyurl.com/bddfphe4 severeme.cymru@gmail.com
tinyurl.com/bddfphe4 severeme.cymru@gmail.com
Motion - NDM8884 - Welsh Parliament
The Welsh Parliament is the democratically elected body that represents the interests of Wales and its people.
tinyurl.com
November 17, 2025 at 3:05 PM
Welsh Senedd Debate on ME/CFS is postponed again! Now 10 Dec. Debate on Motion 8884 to be led by Adam Price, MS. With Senedd elections approaching fast, now is a good time to enlist your MS's support – because they also want yours! More info
tinyurl.com/bddfphe4 severeme.cymru@gmail.com
tinyurl.com/bddfphe4 severeme.cymru@gmail.com
Komaroff at the IACFSME conference: “40 years ago we knew nothing about the underlying biology of ME/CFS. Today, multiple abnormalities involving the CNS and ANS, immune system, energy metabolism, vascular system and gut microbiome have been identified and replicated."
tinyurl.com/43rf4rbz
tinyurl.com/43rf4rbz
My Reflections on the 2025 IACFSME Conference
From October 22 through October 25, I attended the 2025 IACFSME 17th Research and Clinical Conference (International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis)…
tinyurl.com
November 17, 2025 at 3:04 PM
Komaroff at the IACFSME conference: “40 years ago we knew nothing about the underlying biology of ME/CFS. Today, multiple abnormalities involving the CNS and ANS, immune system, energy metabolism, vascular system and gut microbiome have been identified and replicated."
tinyurl.com/43rf4rbz
tinyurl.com/43rf4rbz
International art project, One Red Leaf at a Time, invites contributions from chronically ill artists in any format for a 2026 exhibition. The aim is to use messages of hope from the research community as inspiration for creative expressions. Closing date 30 Dec 2025
tinyurl.com/y2wa9ydt
tinyurl.com/y2wa9ydt
One Red Leaf at a Time: an international art project
As we approach the end of ME Awareness month, The Red Leaf Creative Collaborative is excited to launch One Red Leaf at a Time: an international art project.
tinyurl.com
November 17, 2025 at 3:00 PM
International art project, One Red Leaf at a Time, invites contributions from chronically ill artists in any format for a 2026 exhibition. The aim is to use messages of hope from the research community as inspiration for creative expressions. Closing date 30 Dec 2025
tinyurl.com/y2wa9ydt
tinyurl.com/y2wa9ydt
1 in 4 of the working-age population are Disabled.
Disabled people are twice as likely to be unemployed.
Almost two-thirds of all people living in extreme poverty are Disabled.
CDJ suggests how to close the employment gap.
tinyurl.com/2wyzstdy
Disabled people are twice as likely to be unemployed.
Almost two-thirds of all people living in extreme poverty are Disabled.
CDJ suggests how to close the employment gap.
tinyurl.com/2wyzstdy
Closing the disability employment gap
Disabled people want to be able to trust that the system is working for not against us. If we can be confident that engaging in the system will lead to employment with no financial threat, we will.
tinyurl.com
November 17, 2025 at 2:59 PM
1 in 4 of the working-age population are Disabled.
Disabled people are twice as likely to be unemployed.
Almost two-thirds of all people living in extreme poverty are Disabled.
CDJ suggests how to close the employment gap.
tinyurl.com/2wyzstdy
Disabled people are twice as likely to be unemployed.
Almost two-thirds of all people living in extreme poverty are Disabled.
CDJ suggests how to close the employment gap.
tinyurl.com/2wyzstdy
Dr Michelle James speaks about uncovering inflammation and mitochondrial dysfunction in ME/CFS using whole body PET/MR imaging. [31 mins] +Transcript
tinyurl.com/348k2h3b
tinyurl.com/348k2h3b
Michelle James, PhD | Inflammation and mitochondrial dysfunction in ME/CFS using whole body PET/MRI
Michelle James, PhD, Stanford University Uncovering inflammation and mitochondrial dysfunction in ME/CFS using whole body PET/MR imaging
tinyurl.com
November 17, 2025 at 2:58 PM
Dr Michelle James speaks about uncovering inflammation and mitochondrial dysfunction in ME/CFS using whole body PET/MR imaging. [31 mins] +Transcript
tinyurl.com/348k2h3b
tinyurl.com/348k2h3b
The UK gov needs to change its “extremely damaging” narrative that suggests disabled people are an “economic burden” & move away from threats & sanctions, if it wants to increase disability employment, MPs have been told by Disabled people’s organisations (DPOs).
tinyurl.com/d9954wjx
tinyurl.com/d9954wjx
Government must drop ‘economic burden’ narrative and sanctions, MPs are told
The government needs to change its “extremely damaging” narrative that suggests disabled people are an “economic burden”, and move away from threats and sanctions, if it wants to increase disabilit…
tinyurl.com
November 17, 2025 at 2:56 PM
The UK gov needs to change its “extremely damaging” narrative that suggests disabled people are an “economic burden” & move away from threats & sanctions, if it wants to increase disability employment, MPs have been told by Disabled people’s organisations (DPOs).
tinyurl.com/d9954wjx
tinyurl.com/d9954wjx
The LOCOME Project Webinar, with details of the results, was due on 24 Nov but has now been rescheduled to 5 Dec @ 2pm. This collaboration between PrecisionLife, Action for ME & the University of Edinburgh, is nearing completion at the end of Nov. Register in advance.
tinyurl.com/46a2nhhk
tinyurl.com/46a2nhhk
Welcome! You are invited to join a webinar: Research Update Webinar: LOCOME Results. After registering, you will receive a confirmation email about joining the webinar.
Welcome! You are invited to join a webinar: Research Update Webinar: LOCOME Results. After registering, you will receive a confirmation email about joining the webinar.
tinyurl.com
November 17, 2025 at 2:55 PM
The LOCOME Project Webinar, with details of the results, was due on 24 Nov but has now been rescheduled to 5 Dec @ 2pm. This collaboration between PrecisionLife, Action for ME & the University of Edinburgh, is nearing completion at the end of Nov. Register in advance.
tinyurl.com/46a2nhhk
tinyurl.com/46a2nhhk
MP Tessa Munt has tabled a debate on UK Gov support for ME/CFS in Westminster Hall on Wed 19 Nov 2025. #ThereForMe have further information and a template letter people can use to ask their MP to attend.
tinyurl.com/4x9sp6jp
tinyurl.com/4x9sp6jp
Westminster Hall Debate on ME: Wednesday 19 November
Help us pack Westminster Hall!
tinyurl.com
November 17, 2025 at 2:53 PM
MP Tessa Munt has tabled a debate on UK Gov support for ME/CFS in Westminster Hall on Wed 19 Nov 2025. #ThereForMe have further information and a template letter people can use to ask their MP to attend.
tinyurl.com/4x9sp6jp
tinyurl.com/4x9sp6jp
Register for the #MEvoicesWales Self-Management event on Zoom.
Friday 28 November 2025, 11-12.30
What? Why? How? Is there support in Wales? Join the discussion to explore these questions, and more.
forms.gle/y1133Dinnyk4...
Friday 28 November 2025, 11-12.30
What? Why? How? Is there support in Wales? Join the discussion to explore these questions, and more.
forms.gle/y1133Dinnyk4...
ME Voices Wales: ME/CFS Self-management event
Event Timing: Friday 28 November 2025, 11:00am - 12:30pm
Register to attend via Zoom
Do you have questions or thoughts about ME/CFS self-management?
Why is it necessary?
What is it?
Can anyone help?
...
forms.gle
November 15, 2025 at 12:00 PM
Register for the #MEvoicesWales Self-Management event on Zoom.
Friday 28 November 2025, 11-12.30
What? Why? How? Is there support in Wales? Join the discussion to explore these questions, and more.
forms.gle/y1133Dinnyk4...
Friday 28 November 2025, 11-12.30
What? Why? How? Is there support in Wales? Join the discussion to explore these questions, and more.
forms.gle/y1133Dinnyk4...
Cofrestrwch ar gyfer y digwyddiad Hunanreolaeth #MEvoicesWales ar Zoom.
Dydd Gwener 28 Tachwedd 2025, 11-12.30
Beth? Pam? Sut? A oes cefnogaeth yng Nghymru?
Ymunwch â’r drafodaeth er mwyn ymchwilio i’r cwestiynau hyn, a mwy.
forms.gle/y1133Dinnyk4...
Dydd Gwener 28 Tachwedd 2025, 11-12.30
Beth? Pam? Sut? A oes cefnogaeth yng Nghymru?
Ymunwch â’r drafodaeth er mwyn ymchwilio i’r cwestiynau hyn, a mwy.
forms.gle/y1133Dinnyk4...
ME Voices Wales: ME/CFS Self-management event
Event Timing: Friday 28 November 2025, 11:00am - 12:30pm
Register to attend via Zoom
Do you have questions or thoughts about ME/CFS self-management?
Why is it necessary?
What is it?
Can anyone help?
...
forms.gle
November 15, 2025 at 11:59 AM
Cofrestrwch ar gyfer y digwyddiad Hunanreolaeth #MEvoicesWales ar Zoom.
Dydd Gwener 28 Tachwedd 2025, 11-12.30
Beth? Pam? Sut? A oes cefnogaeth yng Nghymru?
Ymunwch â’r drafodaeth er mwyn ymchwilio i’r cwestiynau hyn, a mwy.
forms.gle/y1133Dinnyk4...
Dydd Gwener 28 Tachwedd 2025, 11-12.30
Beth? Pam? Sut? A oes cefnogaeth yng Nghymru?
Ymunwch â’r drafodaeth er mwyn ymchwilio i’r cwestiynau hyn, a mwy.
forms.gle/y1133Dinnyk4...
HoL Home-based Working Cmte's report finds home working cd support UK Gov's plans to get ppl back into work. It also recommends incr investment in broadband, addressing shifts in demand 4 transport & tackling risks AI may pose 2 remote jobs in future
t.ly/yKpru
t.ly/yKpru
Is Working From Home Working? New Lords Committee Report
t.ly
November 15, 2025 at 11:58 AM
HoL Home-based Working Cmte's report finds home working cd support UK Gov's plans to get ppl back into work. It also recommends incr investment in broadband, addressing shifts in demand 4 transport & tackling risks AI may pose 2 remote jobs in future
t.ly/yKpru
t.ly/yKpru
MERUK gives a guide to microclots and how they may contribute to the pathology of long COVID. They are more than 'tiny clumps that block blood vessels and cause symptoms'.
t.ly/zdCpj
t.ly/zdCpj
November 15, 2025 at 11:47 AM
MERUK gives a guide to microclots and how they may contribute to the pathology of long COVID. They are more than 'tiny clumps that block blood vessels and cause symptoms'.
t.ly/zdCpj
t.ly/zdCpj
Dr Suzanne Vernon explains how oxaloacetate may strengthen the fatigue-cognition axis by restoring efficient cellular metabolism in ME/CFS and Long COVID [8 mins] +Transcript www.youtube.com/watch?v=McZn...
IACFSME 2025 Conference Suzanne D. Vernon, PhD
YouTube video by Bateman Horne Center
www.youtube.com
November 15, 2025 at 11:46 AM
Dr Suzanne Vernon explains how oxaloacetate may strengthen the fatigue-cognition axis by restoring efficient cellular metabolism in ME/CFS and Long COVID [8 mins] +Transcript www.youtube.com/watch?v=McZn...
A new “independent” investigation will be led by Alan Milburn into the rising number of young ppl who are not in jobs, training or education which will exclusively target sick & disabled claimants a DWP document has revealed.
t.ly/qe66H
t.ly/qe66H
New investigation on NEETs will only target young disabled people, DWP document shows
A new “independent” investigation into the rising number of young people who are not in jobs, training or education will exclusively target sick and disabled claimants, a government document has re…
t.ly
November 15, 2025 at 11:44 AM
A new “independent” investigation will be led by Alan Milburn into the rising number of young ppl who are not in jobs, training or education which will exclusively target sick & disabled claimants a DWP document has revealed.
t.ly/qe66H
t.ly/qe66H
Cort reports on unpublished research that suggests sympathetic nervous system is not hyperactivated in ME/CFS as previously believed, but is weak – struggling, a lot in ME & a bit less in long COVID. This may be why breathwork, HRV training, or vagus stimulation often only goes so far.
rb.gy/rnzuw9
rb.gy/rnzuw9
Role Reversal: Could a WEAKENED Fight/Flight Response Be Causing ME/CFS and Long COVID? The 2025 IACFS/ME Conference Pt. I - Health Rising
Low brain norepinephrine levels could explain many of the symptoms present in ME/CFS, long COVID and similar diseases.
rb.gy
November 14, 2025 at 5:24 PM
Cort reports on unpublished research that suggests sympathetic nervous system is not hyperactivated in ME/CFS as previously believed, but is weak – struggling, a lot in ME & a bit less in long COVID. This may be why breathwork, HRV training, or vagus stimulation often only goes so far.
rb.gy/rnzuw9
rb.gy/rnzuw9
OMF briefly explains the range of people involved in ME research.
urli.info/1jjLp
urli.info/1jjLp
Test of link 'Study personnel - Open Medicine Foundation' for cyber security threats
urli.info
November 13, 2025 at 10:26 AM
OMF briefly explains the range of people involved in ME research.
urli.info/1jjLp
urli.info/1jjLp
Is your home hard to heat? Do you receive a means tested benefit OR live with a respiratory, circulatory or mental health condition? You may be eligible for free home energy saving improvements from Nest Wales/Nyth Cymru. Start planning for winter now!
tiny.cc/qszu001
tiny.cc/qszu001
Get help with energy efficiency in your home from Nest | GOV.WALES
Free energy advice and grants including help with solar and boilers on 0808 808 2244 or find out more online.
tiny.cc
November 13, 2025 at 10:24 AM
Is your home hard to heat? Do you receive a means tested benefit OR live with a respiratory, circulatory or mental health condition? You may be eligible for free home energy saving improvements from Nest Wales/Nyth Cymru. Start planning for winter now!
tiny.cc/qszu001
tiny.cc/qszu001
Claire Fisher, Campaign For Disability Justice says Keep Britain Working document separates long term sick from disabled, altho equality law say employers r obliged to make “reasonable adjustments”. Disabled ppl need to be at centre of finding solutions
tiny.cc/nszu001
tiny.cc/nszu001
Disabled people have to be at the table with the government to 'keep Britain working'
Claire Fisher writes about why disabled people have to be given a voice in government plans to 'keep Britain working'.
tiny.cc
November 13, 2025 at 10:23 AM
Claire Fisher, Campaign For Disability Justice says Keep Britain Working document separates long term sick from disabled, altho equality law say employers r obliged to make “reasonable adjustments”. Disabled ppl need to be at centre of finding solutions
tiny.cc/nszu001
tiny.cc/nszu001
Dr David Systrom discusses treating ME/CFS and Long COVID as organic diseases with repurposed medications [19 mins] +Transcript
tinyurl.com/yw4528s8
tinyurl.com/yw4528s8
David Systrom, MD | Treating ME/CFS and Long COVID as organic diseases with repurposed medications
David Systrom, MD, Harvard University Treating ME/CFS and Long COVID as organic diseases with repurposed medications
tinyurl.com
November 13, 2025 at 10:15 AM
Dr David Systrom discusses treating ME/CFS and Long COVID as organic diseases with repurposed medications [19 mins] +Transcript
tinyurl.com/yw4528s8
tinyurl.com/yw4528s8
TUC says earnings gap btw Disabled & non-Disabled workers remains significant at £4,000 less a year or £2.24 an hour. “Everyone who works for a living deserves to earn decent living. But disabled workers are still waiting for pay parity & fair tx at work"
tinyurl.com/3x5azkap
tinyurl.com/3x5azkap
tinyurl.com
November 13, 2025 at 10:09 AM
TUC says earnings gap btw Disabled & non-Disabled workers remains significant at £4,000 less a year or £2.24 an hour. “Everyone who works for a living deserves to earn decent living. But disabled workers are still waiting for pay parity & fair tx at work"
tinyurl.com/3x5azkap
tinyurl.com/3x5azkap
MERUK highlights researcher Caroline Kingdon's talk about the precautions and adaptations she makes when visiting people with severe ME to avoid making them more ill.
tinyurl.com/4pe6kjk6
tinyurl.com/4pe6kjk6
November 13, 2025 at 10:00 AM
MERUK highlights researcher Caroline Kingdon's talk about the precautions and adaptations she makes when visiting people with severe ME to avoid making them more ill.
tinyurl.com/4pe6kjk6
tinyurl.com/4pe6kjk6