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
Radio Wales phone-in on #MEcfs
A certain John from Swansea from about 10:30
www.bbc.co.uk/sounds/play/...
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
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
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
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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.
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❤️🩹 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.
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Some of the SMEDC team with Adam Price. Pictures held up of patients unable to attend
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
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
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.
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”.
• 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
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
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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
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
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
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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
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#severeME
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
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
As ever, if you’d like to get in touch please email: severeme.cymru@gmail.com
Diolch / Thanks
Rob Messenger
Severe ME Difrifol Cymru
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#pwme #longcovid #meawareness #senedddebate #mecfs #meawareness #severeme
…- 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
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
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.
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*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
Other Senedd Members can take part in the debate, including yours, and can add weight to Adam's presentation.
So, in the meantime, if you’d like to get in touch please email: severeme.cymru@gmail.com
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www.500milesfor.me
@wamesmecfs.bsky.social @meassociation.org.uk
@actionforme.bsky.social
…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
The Senedd Business Committee has therefore agreed to allocate a new date for it: Wednesday 26th November - Put it in your diary!
We know that this understandable and unavoidable delay will be a disappointment to #pwme in Wales, and to their families, friends and carers… 2/4
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
