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Severe ME Difrifol Cymru

@severemecymru.bsky.social
35 followers 10 following 49 posts

Informal group of people in Wales with Severe/Very Severe ME and their carers. Campaigning to get Motion 8884 through to a debate at the Senedd.

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Severe ME Difrifol Cymru @severemecymru.bsky.social · 28/09/2026
Nid oes rhaid i chi fod yn byw yn ardal Bae Abertawe i fod yno – mae'n dda gwybod beth sy'n digwydd ble bynnag chi'n byw yng Nghymru. Mae Lleisiau ME Cymru am adeiladu llais ME cryfach ar lefel leol a drwy Cymru gyfan, felly dewch ac ymunwch. 3/3
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 28/09/2026
Bydd Tîm ME/Covid Hir Bwrdd Iechyd Bae Abertawe yn rhoi cyflwyniad am eu gwasanaeth ac yn ateb eich cwestiynau. 2/3
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 28/09/2026
Ydych chi’n byw yng Nghymru? Hoffech chi ddarganfod beth mae'r gwasanaethau ME a Covid Hir newydd a ariennir gan Lywodraeth Cymru yn cynnig i gleifion yn lleol? Dewch ac ymunwch â'r webinar nesaf gan Lleisiau ME Cymru - Dydd Gwener, Hydref 2il 12.30-1.30yp. tinyurl.com/bdndpr 1/3
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 28/09/2026
You don’t have to be in the Swansea Bay UHB area to be there – it’s good to find out what’s going on wherever you live in Wales. ME Voices Wales is about building a stronger ME voice at both local and all-Wales level, so please come along if you can. 3/3
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 28/09/2026
Swansea Bay University Health Board’s ME/Long Covid Team will give a presentation about their service and answer your questions. 2/3
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 28/09/2026
Do you live in Wales? Want to find out what the new Welsh Gov funded #ME and #LongCovid services are offering for patients at local level? Come and join the next ME Voices Wales webinar on Friday October 2nd 12.30-1.30pm. tinyurl.com/bdndprdr 1/3
tinyurl.com
Microsoft Virtual Events Powered by Teams
Microsoft Virtual Events Powered by Teams
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 01/09/2026
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
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 15/08/2026
3. Develop an ME/CFS and Long COVID Research Strategy to accelerate research in Wales through the Life Sciences Sector / Life Sciences Hub by 2027. 4. Consider long-term sequelae in future pandemic planning/ preventive strategies, reviewing Infection Prevention Control (IPC) guidance. 8/8
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 15/08/2026
2. Appoint an All-Wales Clinical Lead(s) / Medical Consultant(s) for ME and Long Covid to coordinate care across health boards, reduce regional variation, support complex cases, guide training and treatment, keeping Wales in step with emerging research. 7/8
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 15/08/2026
1. Create a National Expert Group of health care professionals and people with lived experience to coproduce an All-Wales Strategy and Delivery Plan for ME and Long Covid, ensuring equity of service and compliance with NICE guidance (NG206 ME/CFS), across all ages and all severity levels. 6/8
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 15/08/2026
We urge the government to implement both immediate and long-term support for those in desperate need. Actions co-produced by: - @severemecymru.bsky.social - @wamesmecfs.bsky.social - @actionforme.bsky.social - @longcovidsupport.bsky.social 5/8
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 15/08/2026
Sufferers are confined to dark rooms, require 24/7 care, some unable to speak, feed themselves, tolerate light or sound, or even sit up. Proposed actions will ensure people with #SevereME can safely access evidence-informed medical care and improve their chances of recovery. 4/8
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 15/08/2026
In particular, major concerns persist regarding access for those with the severe form of the condition, leaving some families facing life-impacting decisions, without medical guidance. 3/8
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 15/08/2026
Take urgent action so those with Severe #MyalgicEncephalomyelitis (ME) in Wales are no longer left without vital medical care petitions.senedd.wales/petitions/24... Service provision for people with ME remains inconsistent across Wales. 2/8
petitions.senedd.wales
Petition: Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care
Service provision for people with Myalgic Encephalomyelitis (ME) remains inconsistent across Wales. In particular, major concerns persist regarding access for those with the severe form of the conditi...
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 15/08/2026
Shauna, a member of Severe ME Difrifol Cymru, has organised this petition in support of her partner, Row, and all those with Severe and Very Severe ME in #Wales. Please sign it and share widely. Every signature counts! petitions.senedd.wales/petitions/24... 1/8 #pwme #mecfs #severeme
petitions.senedd.wales
Petition: Take urgent action so those with Severe Myalgic Encephalomyelitis in Wales are no longer left without vital medical care
Service provision for people with Myalgic Encephalomyelitis (ME) remains inconsistent across Wales. In particular, major concerns persist regarding access for those with the severe form of the conditi...
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 31/07/2026
The unmet need across all severity levels was highlighted. Mabon acknowledged the long standing frustration felt by people with #ME and #LongCovid at the lack of understanding and appropriate provision within the NHS - what’s been done has been done to us rather than with us. 3/3
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 31/07/2026
We appreciate him arranging this meeting so soon after taking office. The 4 groups worked together to agree these Key Asks (see photo)… 2/3
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 31/07/2026
On 28 July, 4 groups @severemecymru.bsky.social , @longcovidsupport.bsky.social , @wamesmecfs.bsky.social and @actionforme.bsky.social met with @mabonapgwynfor.bsky.social the new Welsh Minister for Health & Care. He’s previously spoken up for #pwME , including in last December’s Senedd debate. 1/3
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 23/06/2026
Don't miss next week's ME Voices Wales webinar when Hywel Dda UHB will share how their LC & ME/CFS Service can support people living with ME/CFS in Ceredigion, Carmarthenshire & Pembrokeshire. Mon 29 June, 1230-1330. Register in advance: tinyurl.com/5y8btxpj mevoiceswales@gmail.com
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 23/06/2026
Peidiwch â cholli gweminar ME Voices Wales yr wythnos nesaf pan fydd BIP Hywel Dda yn rhannu sut y gall eu Gwasanaeth LC a ME/CFS gefnogi pobl sy’n byw gyda ME/CFS yng Ngheredigion, Sir Gaerfyrddin a Sir Benfro. Dydd Llun 29 Mehefin, 12:30-13:30. tinyurl.com/5y8btxpj mevoiceswales@gmail.com
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 19/06/2026
Mae Lleisiau ME Cymru am adeiladu llais ME cryfach ar lefel leol a drwy Cymru gyfan, felly dewch ac ymunwch. Mwy o wybodaeth: www.wames.org.uk/mevw-webinar... 3/3
wames.org.uk
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 19/06/2026
Bydd Tîm ME/Covid Hir Bwrdd Iechyd Hywel Dda yn rhoi cyflwyniad am eu gwasanaeth ac yn ateb eich cwestiynau. Nid oes rhaid i chi fod yn byw yn ardal Hywel Dda i fod yno – mae'n dda gwybod beth sy'n digwydd ble bynnag chi'n byw yng Nghymru. 2/3
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 19/06/2026
Ydych chi’n byw yng Nghymru ac eisiau darganfod beth mae'r gwasanaethau #ME a #CovidHir newydd a ariennir gan Lywodraeth Cymru yn cynnig i gleifion yn lleol? Ymunwch â'r webinar nesaf gan Lleisiau ME Cymru - 29/06/2026 12.30-1.30yp. Cofrestrwch yma: tinyurl.com/sx3wu23j 1/3
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 19/06/2026
ME Voices Wales is about building a stronger ME voice at both local and all-Wales level, so please come along. More info: www.wames.org.uk/mevw-webinar... 3/3
wames.org.uk
MEVW self-management webinar 3: Hywel Dda UHB 29 June 2026 - WAMES
Discover how NHS Wales supports people with ME/CFS: self-management webinars Hywel Dda University Health Board’s Long COVID and ME/CFS Service will be talking about how their service can support peopl...
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 19/06/2026
Hywel Dda Health Board’s ME/Long Covid Team will give a presentation about their service and answer your questions.    You don’t have to be in Hywel Dda to be there – it’s good to find out what’s going on wherever you live in Wales. 2/3
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 19/06/2026
Do you live in Wales? Want to find out what the new Welsh Gov funded #ME and #LongCovid services are offering for patients at local level?    Come and join the next ME Voices Wales webinar on Monday 29th June 12.30-1.30pm.  Register here: events.teams.microsoft.com/event/b919a5... 1/3
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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 17/04/2026
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
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John Peters @johnthejack.bsky.social · 23/03/2026
Radio Wales phone-in on #MEcfs A certain John from Swansea from about 10:30 www.bbc.co.uk/sounds/play/...
bbc.co.uk
The Phone In - Jason Mohammad takes your calls on ME, women's safety whilst running and extras. - BBC Sounds
Jason takes your calls on ME, women's safety whilst running and extras.
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Long Covid Kids @longcovidkids.bsky.social · 15/03/2026
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
longcovidkids.org
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...
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Long Covid Kids @longcovidkids.bsky.social · 15/03/2026
More than 1,000 people across the UK have written to MPs calling for greater recognition of the condition in children and young people, as part of a national campaign. www.dorsetecho.co.uk/news/2593333... #LongCovidAwareness #Dorset #LongCovidKids #LongCovid
dorsetecho.co.uk
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…
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Long Covid UK @longcoviduk.bsky.social · 15/03/2026
If you or a loved one are able to donate to our fundraiser today, we are asking for £6 for 6 years — £1 for each year since the pandemic began. You can donate quickly and securely via the JustGiving link: www.justgiving.com/campaign/lon... #LongCovidAwarenessDay #EveryHeartbeatCounts 3/3
justgiving.com
Long Covid Awareness Day 2026
Make a one-off donation of £6 to symbolise every year of the pandemic that has passed. Or, if you're able, become a regular donor. Together we can make a difference to the lives of those living with…
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Long Covid UK @longcoviduk.bsky.social · 15/03/2026
People directly affected by Long Covid are at the heart of everything we do, and we are deeply grateful to everyone who helps make this work possible. Today, we stand in solidarity with our community and raise our voices together. And tomorrow, we keep going. 2/3
justgiving.com
Long Covid Awareness Day 2026
Make a one-off donation of £6 to symbolise every year of the pandemic that has passed. Or, if you're able, become a regular donor. Together we can make a difference to the lives of those living with…
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Long Covid UK @longcoviduk.bsky.social · 15/03/2026
❤️‍🩹 A THANK YOU TO OUR COMMUNITY ❤️‍🩹 Today is Long Covid Awareness Day. Around the world, people will be talking about Long Covid, learning more about what it is, and hearing about its impact. 1/3
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John Peters @johnthejack.bsky.social · 11/12/2025
Thanks Adam Price & Osian for their work with @severemecymru.bsky.social Excellent debate yesterday. youtu.be/akICL-DXfp8?... Adam with SMEDC team after the debate. Present in spirit & pictures by @jeremy-jeffs.bsky.social Cerith, Tomos, Eleri and someone else. Pic by Jacob. #MEcfs #LongCovid
Some of the SMEDC team with Adam Price. Pictures held up of patients unable to attend
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Adam @abrokenbattery.bsky.social · 10/12/2025
Transcript record.assembly.wales/Plenary/1547...
record.assembly.wales
Plenary 10/12/2025 - Welsh Parliament
The Welsh Parliament is the democratically elected body that represents the interests of Wales and its people.
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Adam @abrokenbattery.bsky.social · 10/12/2025
The Welsh Parliament debate on ME/CFS is now on YouTube. Adam Price MS led the debate, calling for better care, recognition, and support across Wales youtu.be/akICL-DXfp8?... Link the motion record.senedd.wales/Motion/8884
youtu.be
Welsh Parliament Debate on ME/CFS December 2025
YouTube video by Broken Battery
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Adam @abrokenbattery.bsky.social · 11/12/2025
Highlights - Mark Isherwood MS shares the story of a constituent whose life was transformed by a virus, becoming severely affected and housebound with #MECFS. It has “stripped away their independence and hope”, yet support, research and funding in Wales remain minimal.
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Adam @abrokenbattery.bsky.social · 13/12/2025
Sioned Williams in Welsh Parliament talking about severe and very severe ME/CFS. It can be “as disabling as late-stage MS or advanced cancer but doesn't get a fraction of the acknowledgement, understanding or funding”.
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 12/12/2025
• The health professionals in the Adferiad Teams who are trying their very best for #pwME – we want to work with you; • WAMES , MESiG, ME Voices Wales, Action For ME, ME Association, 25% ME Group & Long Covid Support for backing us - & because ‘We are Stronger Together’! 5/5
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 12/12/2025
Huge thanks to: • Those who shared their lived experience of this devastating illness with their MSs; • MSs who spoke in the debate on their behalf; • The Senedd as a whole which voted to carry the motion unopposed; • Jeremy Miles for his positive response on behalf of the WG 4/5
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 12/12/2025
We’re grateful for Adam’s commitment in bringing to the attention of the Senedd the needs of people with severe and very severe ME. 3/5
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 12/12/2025
The Welsh Government is sharing £8.3m for Adferiad services for #pwME & other chronic illnesses. Services should be co-produced locally & comply with NICE guidance. But, without national strategy, there is a danger those with most severe needs will continue to receive the least care. 2/5
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 12/12/2025
Members of Severe ME Difrifol Cymru have been working with Adam Price, MS, for the past year to prepare for Wednesday’s debate. You can see it here:  tinyurl.com/mux4pkcr or read the transcript: tinyurl.com/4aumbvja 1/5
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 07/12/2025
Watch it live or on catch-up on Senedd TV senedd.tv   The debate is part of an all-afternoon Plenary Session, so the start time is approximate – here’s the timetable:  business.senedd.wales/ieListDocument… Diolch yn fawr / Thank you  �� severeme.cymru@gmailil.com 3/3 #severeME
senedd.tv
Home
The Senedd is the democratically elected body that represents the interests of Wales and its people, makes laws for Wales, agrees Welsh taxes and holds the Welsh Government to account.
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 07/12/2025
Find your local Constituency/Regional MSs: senedd.wales/find-a-member-… - ring them / email them and ask them to speak up for you and others with ME.    This is debate is relevant to provision for people with ME at all severity levels. 2/3
senedd.wales
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 07/12/2025
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
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 15/11/2025
As ever, if you’d like to get in touch please email: severeme.cymru@gmail.com Diolch / Thanks Rob Messenger Severe ME Difrifol Cymru 5/5 #pwme #longcovid #meawareness #senedddebate #mecfs #meawareness #severeme
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 15/11/2025
…- they are the lived experiences which help politicians connect with the lives of their constituents, their voters. With Senedd elections approaching fast, now is a good time to enlist your Senedd Members’ support – because they also want yours! 4/5 #myalgicencephalomyelitis
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 15/11/2025
There is a public gallery, and it would be great to fill it! The debate will also be live-streamed / recorded on Senedd TV. We’ll let you know more details as soon as we get them. Adam stresses that personal stories carry great weight in such events… 3/5 #meawareness
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Severe ME Difrifol Cymru @severemecymru.bsky.social · 15/11/2025
We obviously have no control over how Senedd business is managed, and there are many demands on the Senedd timetable, especially in the build-up to next May’s elections. The debate has been re-allocated to the Plenary Session on the afternoon of Wednesday, December 10th. 2/5
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