RobMessenger
@500milesforme.bsky.social
West Wales - Gorllewin Cymru - Carer - son very severe ME - longing for him to get his life back - www.500milesfor.ME
Reposted by RobMessenger
There’s still time to sign up for tomorrow’s webinar with Cardiff & Vale’s #ME / #LongCovid Service!
tinyurl.com/4898cbfk
Mae yna dal amser i gofrestru ar gyfer gweminar yfory gyda Gwasanaeth ME / COVID Hir Caerdydd a'r Fro!
Registration closes at 9am 2nd September.
#pwme
tinyurl.com/4898cbfk
Mae yna dal amser i gofrestru ar gyfer gweminar yfory gyda Gwasanaeth ME / COVID Hir Caerdydd a'r Fro!
Registration closes at 9am 2nd September.
#pwme
September 1, 2026 at 3:34 PM
There’s still time to sign up for tomorrow’s webinar with Cardiff & Vale’s #ME / #LongCovid Service!
tinyurl.com/4898cbfk
Mae yna dal amser i gofrestru ar gyfer gweminar yfory gyda Gwasanaeth ME / COVID Hir Caerdydd a'r Fro!
Registration closes at 9am 2nd September.
#pwme
tinyurl.com/4898cbfk
Mae yna dal amser i gofrestru ar gyfer gweminar yfory gyda Gwasanaeth ME / COVID Hir Caerdydd a'r Fro!
Registration closes at 9am 2nd September.
#pwme
Reposted by RobMessenger
Impressionen von der #Liegenddemo #Hannover
Wir demonstrieren für die dringende Aufklärung, Anerkennung, Forschung und Versorgung von #MECFS
Bewegend wie viele Menschen heute wieder dabei waren.
Danke @liegenddemohann.bsky.social für die tolle Organisation! 🙏🏼
Wir demonstrieren für die dringende Aufklärung, Anerkennung, Forschung und Versorgung von #MECFS
Bewegend wie viele Menschen heute wieder dabei waren.
Danke @liegenddemohann.bsky.social für die tolle Organisation! 🙏🏼
May 9, 2026 at 2:34 PM
Impressionen von der #Liegenddemo #Hannover
Wir demonstrieren für die dringende Aufklärung, Anerkennung, Forschung und Versorgung von #MECFS
Bewegend wie viele Menschen heute wieder dabei waren.
Danke @liegenddemohann.bsky.social für die tolle Organisation! 🙏🏼
Wir demonstrieren für die dringende Aufklärung, Anerkennung, Forschung und Versorgung von #MECFS
Bewegend wie viele Menschen heute wieder dabei waren.
Danke @liegenddemohann.bsky.social für die tolle Organisation! 🙏🏼
Reposted by RobMessenger
This has been a challenging crowdfunding for Berkeley's Trial by Error project on ME, ME/CFS, Long COVID, etc, but it seems like things are catching up in the final days. Now at 80% of the goal! Thanks to all!!! crowdfund.berkeley.edu/project/49720
Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc
Help UC Berkeley raise $75,000 for the project: Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc. Your gift will make a difference!
crowdfund.berkeley.edu
May 6, 2026 at 5:08 PM
This has been a challenging crowdfunding for Berkeley's Trial by Error project on ME, ME/CFS, Long COVID, etc, but it seems like things are catching up in the final days. Now at 80% of the goal! Thanks to all!!! crowdfund.berkeley.edu/project/49720
Reposted by RobMessenger
The first ME Voices Wales self-management webinar: Wed 22 April 12.30-1.30pm
ABUHB's Symptom Management service will explain what support they can give people with ME/CFS. Please share.
Register here: tinyurl.com/mwkvbnp9
ABUHB's Symptom Management service will explain what support they can give people with ME/CFS. Please share.
Register here: tinyurl.com/mwkvbnp9
April 17, 2026 at 10:25 AM
The first ME Voices Wales self-management webinar: Wed 22 April 12.30-1.30pm
ABUHB's Symptom Management service will explain what support they can give people with ME/CFS. Please share.
Register here: tinyurl.com/mwkvbnp9
ABUHB's Symptom Management service will explain what support they can give people with ME/CFS. Please share.
Register here: tinyurl.com/mwkvbnp9
Reposted by RobMessenger
Get involved today with our template letter:
www.longcovidkids.org/post/invisib...
#LongCovidAwareness #LongCovidKids
@joplatt.bsky.social @longcovidsupport.bsky.social @longcovidsos.bsky.social @longcovidphysio.bsky.social
www.longcovidkids.org/post/invisib...
#LongCovidAwareness #LongCovidKids
@joplatt.bsky.social @longcovidsupport.bsky.social @longcovidsos.bsky.social @longcovidphysio.bsky.social
Invisible to Policy, Visible in Children’s Lives | Long Covid Kids | March 2026
Over 1,000 messages sent to UK politicians. Our campaign “Invisible to Policy, Visible in Children’s Lives” is gathering momentum. The issue is beginning to gain attention in Parliament. Recently, Oxf...
www.longcovidkids.org
March 15, 2026 at 9:10 AM
Get involved today with our template letter:
www.longcovidkids.org/post/invisib...
#LongCovidAwareness #LongCovidKids
@joplatt.bsky.social @longcovidsupport.bsky.social @longcovidsos.bsky.social @longcovidphysio.bsky.social
www.longcovidkids.org/post/invisib...
#LongCovidAwareness #LongCovidKids
@joplatt.bsky.social @longcovidsupport.bsky.social @longcovidsos.bsky.social @longcovidphysio.bsky.social
Reposted by RobMessenger
“For many the pandemic is a distant memory - but for those living with Long Covid, and the families who support them, its impact is a constant, daily reality.
"It’s clear a more coordinated approach is required to tackle Long Covid nationwide" Lloyd Hatton MP, member of the APPG
bit.ly/470Yt5e
"It’s clear a more coordinated approach is required to tackle Long Covid nationwide" Lloyd Hatton MP, member of the APPG
bit.ly/470Yt5e
Teenager calls for better support for young people suffering with Long Covid
A TEENAGER from Weymouth is calling on MPs to take more action over supporting children and young people with Long Covid as a new campaign gathers…
www.dorsetecho.co.uk
March 15, 2026 at 10:01 AM
“For many the pandemic is a distant memory - but for those living with Long Covid, and the families who support them, its impact is a constant, daily reality.
"It’s clear a more coordinated approach is required to tackle Long Covid nationwide" Lloyd Hatton MP, member of the APPG
bit.ly/470Yt5e
"It’s clear a more coordinated approach is required to tackle Long Covid nationwide" Lloyd Hatton MP, member of the APPG
bit.ly/470Yt5e
Reposted by RobMessenger
Jan and the @wamesmecfs.bsky.social team are amazing and do so much for #PwME across #Wales 💙
Thank you so much! 🥰
Thank you so much! 🥰
December 13th. Thank you for being #ThereForME, Jan Russell @wamesmecfs.bsky.social!
Jan is Chair of the Welsh Association of ME and CFS Support (WAMES). Nominated by @deemontague.bsky.social ✨
Jan is Chair of the Welsh Association of ME and CFS Support (WAMES). Nominated by @deemontague.bsky.social ✨
December 13, 2025 at 10:59 AM
Jan and the @wamesmecfs.bsky.social team are amazing and do so much for #PwME across #Wales 💙
Thank you so much! 🥰
Thank you so much! 🥰
Reposted by RobMessenger
This betrayal of Ukraine by Trump, although foreseeable, is the most disgusting of all his acts. #c4news
History will see him as a guilty man.
History will see him as a guilty man.
November 21, 2025 at 7:03 PM
This betrayal of Ukraine by Trump, although foreseeable, is the most disgusting of all his acts. #c4news
History will see him as a guilty man.
History will see him as a guilty man.
Reposted by RobMessenger
*Welsh Senedd Debate on Severe and Very Severe ME*
DEBATE POSTPONED AGAIN - TO 10TH DECEMBER!
We’re sorry to report that there’s been a further postponement of the Welsh Senedd Debate on Motion 8884 – Severe and Very Severe ME - to be led by Adam Price, MS . 1/5 #pwme #severeme
DEBATE POSTPONED AGAIN - TO 10TH DECEMBER!
We’re sorry to report that there’s been a further postponement of the Welsh Senedd Debate on Motion 8884 – Severe and Very Severe ME - to be led by Adam Price, MS . 1/5 #pwme #severeme
November 15, 2025 at 5:41 PM
Reposted by RobMessenger
…but we're grateful that we have a new date for which we can prepare.
Adam stresses that personal stories carry great weight in such events - they are the lived experiences which help politicians connect with the lives of their constituents, their voters. 3/4
Adam stresses that personal stories carry great weight in such events - they are the lived experiences which help politicians connect with the lives of their constituents, their voters. 3/4
October 14, 2025 at 1:06 PM
…but we're grateful that we have a new date for which we can prepare.
Adam stresses that personal stories carry great weight in such events - they are the lived experiences which help politicians connect with the lives of their constituents, their voters. 3/4
Adam stresses that personal stories carry great weight in such events - they are the lived experiences which help politicians connect with the lives of their constituents, their voters. 3/4
Reposted by RobMessenger
Welsh Senedd Debate on Severe and Very Severe ME – 15th October - POSTPONED to 26th Nov.
Adam Price, MS, was due to lead the Members Debate on Severe and Very Severe ME tomorrow in the Welsh Senedd (Parliament), but on Sunday he suffered a close family bereavement. 1/4
Adam Price, MS, was due to lead the Members Debate on Severe and Very Severe ME tomorrow in the Welsh Senedd (Parliament), but on Sunday he suffered a close family bereavement. 1/4
October 14, 2025 at 1:06 PM
Welsh Senedd Debate on Severe and Very Severe ME – 15th October - POSTPONED to 26th Nov.
Adam Price, MS, was due to lead the Members Debate on Severe and Very Severe ME tomorrow in the Welsh Senedd (Parliament), but on Sunday he suffered a close family bereavement. 1/4
Adam Price, MS, was due to lead the Members Debate on Severe and Very Severe ME tomorrow in the Welsh Senedd (Parliament), but on Sunday he suffered a close family bereavement. 1/4
Reposted by RobMessenger
A BIG THANKS to all who’ve supported this effort. And there is still time to contact your MS & urge them to attend & participate in the debate.
Find your local MSs: tinyurl.com/3dea9my3
Personalise a template: www.500milesfor.me
Tell us: [email protected] 2/2
Find your local MSs: tinyurl.com/3dea9my3
Personalise a template: www.500milesfor.me
Tell us: [email protected] 2/2
Find a Member of the Senedd
We are the Welsh Parliament, made up of 60 Members. You are represented in the Senedd by five Members (MSs) - one for your local area and four for the region of Wales you live in.
tinyurl.com
October 9, 2025 at 8:51 AM
A BIG THANKS to all who’ve supported this effort. And there is still time to contact your MS & urge them to attend & participate in the debate.
Find your local MSs: tinyurl.com/3dea9my3
Personalise a template: www.500milesfor.me
Tell us: [email protected] 2/2
Find your local MSs: tinyurl.com/3dea9my3
Personalise a template: www.500milesfor.me
Tell us: [email protected] 2/2
Reposted by RobMessenger
Great News!
OCTOBER 15TH WELSH SENEDD DEBATE ON SEVERE/VERY SEVERE ME
The Welsh Senedd Business Committee has timetabled Senedd Member Adam Price’s Motion 8884 on Severe/Very Severe ME for a debate in the Chamber next Wednesday, 15th October - record.senedd.wales/Motion/8884 1/2
OCTOBER 15TH WELSH SENEDD DEBATE ON SEVERE/VERY SEVERE ME
The Welsh Senedd Business Committee has timetabled Senedd Member Adam Price’s Motion 8884 on Severe/Very Severe ME for a debate in the Chamber next Wednesday, 15th October - record.senedd.wales/Motion/8884 1/2
Motion - NDM8884 - Welsh Parliament
The Welsh Parliament is the democratically elected body that represents the interests of Wales and its people.
record.senedd.wales
October 9, 2025 at 8:51 AM
Great News!
OCTOBER 15TH WELSH SENEDD DEBATE ON SEVERE/VERY SEVERE ME
The Welsh Senedd Business Committee has timetabled Senedd Member Adam Price’s Motion 8884 on Severe/Very Severe ME for a debate in the Chamber next Wednesday, 15th October - record.senedd.wales/Motion/8884 1/2
OCTOBER 15TH WELSH SENEDD DEBATE ON SEVERE/VERY SEVERE ME
The Welsh Senedd Business Committee has timetabled Senedd Member Adam Price’s Motion 8884 on Severe/Very Severe ME for a debate in the Chamber next Wednesday, 15th October - record.senedd.wales/Motion/8884 1/2
Reposted by RobMessenger
Next Tue 7th, the Welsh Senedd Business Committee will be considering allocating 15th Oct for a debate on Severe/Very Severe ME.
#pwME in Wales – please email your Senedd Members – ask them to get behind MS Adam Price’s Motion record.senedd.wales/Motion/8884 1/2
#MECFS #MEawareness
#pwME in Wales – please email your Senedd Members – ask them to get behind MS Adam Price’s Motion record.senedd.wales/Motion/8884 1/2
#MECFS #MEawareness
October 3, 2025 at 3:23 PM
Next Tue 7th, the Welsh Senedd Business Committee will be considering allocating 15th Oct for a debate on Severe/Very Severe ME.
#pwME in Wales – please email your Senedd Members – ask them to get behind MS Adam Price’s Motion record.senedd.wales/Motion/8884 1/2
#MECFS #MEawareness
#pwME in Wales – please email your Senedd Members – ask them to get behind MS Adam Price’s Motion record.senedd.wales/Motion/8884 1/2
#MECFS #MEawareness
Reposted by RobMessenger
We know that it has a good chance of being selected. Can you help to push it over the line?
1. Find your local Constituency/Regional MSs: senedd.wales/find-a-member-…
2. Personalise a template: (500milesfor.me)
3. Tell us: [email protected]
Diolch /Thank you 2/2
1. Find your local Constituency/Regional MSs: senedd.wales/find-a-member-…
2. Personalise a template: (500milesfor.me)
3. Tell us: [email protected]
Diolch /Thank you 2/2
https://senedd.wales/find-a-member-…
October 3, 2025 at 3:23 PM
We know that it has a good chance of being selected. Can you help to push it over the line?
1. Find your local Constituency/Regional MSs: senedd.wales/find-a-member-…
2. Personalise a template: (500milesfor.me)
3. Tell us: [email protected]
Diolch /Thank you 2/2
1. Find your local Constituency/Regional MSs: senedd.wales/find-a-member-…
2. Personalise a template: (500milesfor.me)
3. Tell us: [email protected]
Diolch /Thank you 2/2
Reposted by RobMessenger
We need as many people as possible to contact all of their MSs to ensure we get this debate! Please visit our website to get all the info you need on how to help us - tinyurl.com/mxd3w28z
Diolch 💙 Thank You
4/4
@wamesmecfs.bsky.social @actionforme.bsky.social @meassociation.org.uk
Diolch 💙 Thank You
4/4
@wamesmecfs.bsky.social @actionforme.bsky.social @meassociation.org.uk
Severe ME Difrifol Cymru
Lobbying your Members of the Senedd (MSs) Aug / Sept 2025
We were really encouraged by the support we had from the many Senedd Members (MSs) who visited the Severe ME Difrifol Cymru stall at Y Farchn...
tinyurl.com
August 31, 2025 at 3:36 PM
We need as many people as possible to contact all of their MSs to ensure we get this debate! Please visit our website to get all the info you need on how to help us - tinyurl.com/mxd3w28z
Diolch 💙 Thank You
4/4
@wamesmecfs.bsky.social @actionforme.bsky.social @meassociation.org.uk
Diolch 💙 Thank You
4/4
@wamesmecfs.bsky.social @actionforme.bsky.social @meassociation.org.uk
Reposted by RobMessenger
Y Farchnad was a fantastic start. But now, WE NEED YOU!
If you live in #Wales and would like to see this debate happen in the Senedd, then now is the time to help us. Every person in Wales is represented by one Constituency MS and several Regional MSs… 3/4
If you live in #Wales and would like to see this debate happen in the Senedd, then now is the time to help us. Every person in Wales is represented by one Constituency MS and several Regional MSs… 3/4
August 31, 2025 at 3:36 PM
Y Farchnad was a fantastic start. But now, WE NEED YOU!
If you live in #Wales and would like to see this debate happen in the Senedd, then now is the time to help us. Every person in Wales is represented by one Constituency MS and several Regional MSs… 3/4
If you live in #Wales and would like to see this debate happen in the Senedd, then now is the time to help us. Every person in Wales is represented by one Constituency MS and several Regional MSs… 3/4
DIOLCH YN FAWR IAWN! A VERY BIG THANK YOU to all of you who so generously supported this fund raising effort. Between us we have reached well over double our original target! 1/4
May 27, 2025 at 6:08 PM
DIOLCH YN FAWR IAWN! A VERY BIG THANK YOU to all of you who so generously supported this fund raising effort. Between us we have reached well over double our original target! 1/4
“The Invest in ME Research International Conference is a beacon of hope and progress for the ME/CFS and Long Covid community. It’s where top minds unite to share groundbreaking research, inspire collaboration, and accelerate the path to effective treatments…1/2
May 27, 2025 at 12:22 PM
“The Invest in ME Research International Conference is a beacon of hope and progress for the ME/CFS and Long Covid community. It’s where top minds unite to share groundbreaking research, inspire collaboration, and accelerate the path to effective treatments…1/2
It was great to be running the #Wrexham10k alongside my friend Yanto (aka Gareth aka #Deadpool )Evans,Trustee of Long Covid - who, like me, believes that we’re stronger together!
#longcovid #pwME #MECFS @longcovidsupport.bsky.social @investinmeresearch.bsky.social @vancityreynolds.bsky.social
#longcovid #pwME #MECFS @longcovidsupport.bsky.social @investinmeresearch.bsky.social @vancityreynolds.bsky.social
May 19, 2025 at 4:27 PM
It was great to be running the #Wrexham10k alongside my friend Yanto (aka Gareth aka #Deadpool )Evans,Trustee of Long Covid - who, like me, believes that we’re stronger together!
#longcovid #pwME #MECFS @longcovidsupport.bsky.social @investinmeresearch.bsky.social @vancityreynolds.bsky.social
#longcovid #pwME #MECFS @longcovidsupport.bsky.social @investinmeresearch.bsky.social @vancityreynolds.bsky.social
IMPORTANT CORRECTION: Our first session starts at 11:00 tomorrow morning (Tuesday 13th), not 11:30. You should receive your Zoom invites tomorrow morning. Friday’s session is from 18:00 to 19:30. Looking forward to seeing you there! @wamesmecfs.bsky.social
I've been part of a small team organising a new collaborative project - Lleisiau ME Cymru/ME Voices Wales to build a louder voice for #pwME in Wales. If you have ME, or care for someone who does, please consider registering to take part in one of the first on-line sessions: tinyurl.com/5dw4z5yf
May 12, 2025 at 4:40 PM
IMPORTANT CORRECTION: Our first session starts at 11:00 tomorrow morning (Tuesday 13th), not 11:30. You should receive your Zoom invites tomorrow morning. Friday’s session is from 18:00 to 19:30. Looking forward to seeing you there! @wamesmecfs.bsky.social
I've been part of a small team organising a new collaborative project - Lleisiau ME Cymru/ME Voices Wales to build a louder voice for #pwME in Wales. If you have ME, or care for someone who does, please consider registering to take part in one of the first on-line sessions: tinyurl.com/5dw4z5yf
May 10, 2025 at 5:18 PM
I've been part of a small team organising a new collaborative project - Lleisiau ME Cymru/ME Voices Wales to build a louder voice for #pwME in Wales. If you have ME, or care for someone who does, please consider registering to take part in one of the first on-line sessions: tinyurl.com/5dw4z5yf
Big weekend in #Wrexham - the #RedDragons promoted to the Championship &, even more significantly, you have helped raise >£1150 for @investinmeresearch.bsky.social by supporting my #Wrexham10K run! It hurt, but my knees held up…& I might even do it again!
#pwME #MEresearch #LongCovid
#pwME #MEresearch #LongCovid
April 27, 2025 at 8:51 PM
Big weekend in #Wrexham - the #RedDragons promoted to the Championship &, even more significantly, you have helped raise >£1150 for @investinmeresearch.bsky.social by supporting my #Wrexham10K run! It hurt, but my knees held up…& I might even do it again!
#pwME #MEresearch #LongCovid
#pwME #MEresearch #LongCovid
Today’s my last day of prep for the 10K & tomorrow we travel up to Wrexham for the race on Sunday. I’ve been taking Paula Radcliffe’s advice & stocking up on the carbs…but that’s just normal for me anyway! It’s been a busy day, so here’s one I made earlier that reminds us what this is all about.
April 25, 2025 at 7:54 PM
Today’s my last day of prep for the 10K & tomorrow we travel up to Wrexham for the race on Sunday. I’ve been taking Paula Radcliffe’s advice & stocking up on the carbs…but that’s just normal for me anyway! It’s been a busy day, so here’s one I made earlier that reminds us what this is all about.