WAMES acts as a voice for people with ME/CFS, PVFS their carers, families and professionals. Website: https://xitter.cf/t.co/sL34tzYWHX Facebook and Instagram: WAMESMECFS

Wales
Joined April 2012
On 28 July, 4 groups @Severe_ME_Cymru, @long_covid, @WAMESMECFS and @actionforme - met with @mabonapgwynfor 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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The DWP has today launched the Carer’s Allowance (CA) Call for Evidence. Please see the link here: gov.uk/government/calls-for-… The Call for Evidence seeks views and evidence on modernising CA and will remain open until 18 August. We would be grateful if you could share this with any relevant stakeholders who may wish to submit evidence.
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It’s official - 2nd class mail is to be scrapped and replaced with 3rd class that may arrive when there isn’t a ‘y’ in the day. All at the old 2nd class price of 91p
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📱You can save and share this leaflet on MON 15th to bring awareness to the open letter signed by 58 orgs & 1200 individuals about the communities legitimate concerns about the framing of Long Covid at the #RCPsychIC #socialmediacampaign #HearOurVoices
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Two week reminder to fill in the Timms review into PIP. I know we have been through countless consultations but it WILL be worse if we don’t push back and it’s vital those in MH respond as we are a key target and our organisations tend to be tamer. tinyurl.com/3h56djf7
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🧵 A talented individual (WantedAlive) thought up these cartoons and employed Rick Menard to illustrate them. Well done to them for this initiative. 👏👍 #MEcfs #PwME  1/
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Update from Savannah’s team today Wednesday 25th. #ME 💔 ‘I am gutted to let you know that despite Sonya arguing with them for hours, St Thomas declined to admit Savannah. She is now back in QEH while we desperately look for alternatives.’
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Many "professionals" insist on calling carers "Mum". Stop it is disrespectful and shows that you are a numpty. Here's some reasons bmj.com/content/bmj/367/bmj.… #autism
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For many disabled people, changes in the November Budget put their Motability car at risk. If that's you, you can help us show MPs what's at stake. Find out more on our website and email us by 14 January: bit.ly/4sxKGw8
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WAMES retweeted
Reviewing law for powered mobility devices Consultation seeks views on changing rules for using powered mobility devices, incl powered wheelchairs, mobility scooters on public roads + pavements Closing date 26.03.26 gov.uk/government/consultati…! gov.uk/government/consultati…
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December 15th. Thank you for being #ThereForME, Nicky Proctor! Nicky is an advocate for people with ME, who volunteers with various ME organisations - including #ThereForMe. Nominated by Odette & the York ME Community. ✨
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December 13th. Thank you for being #ThereForME, Jan Russell @WAMESMECFS! Jan is Chair of the Welsh Association of ME and CFS Support (WAMES). Nominated by Dee Montague-Coast. ✨
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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 @Adamprice . 1/5 #pwme #severeme
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🌍 We’re hiring! Join the World ME Alliance as our new Head of Advocacy & Comms — shaping global campaigns for people with ME, a disease long neglected & stigmatised. 💻 Remote (UK or +/-3 hours of pacific time) ⏰ 14 hrs/wk Apply by 10 Nov 2025 👉 worldmealliance.org/2025/10/…
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Reminder: The DecodeME team want to do a related genetic study with the samples they have collected already but unfortunately don’t have the funding yet: megenetics.org.uk/our-projec… #MEcfs #PwME
1) We’ve just published our second instalment on the DecodeME results, this timing zooming in on the genes associated with ME/CFS.
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For the first time ever, the @ACSMNews Guidelines for Exercise Testing & Prescription include ME/CFS! Learn what the new CPET guidelines mean for people with ME/CFS ➡️ bit.ly/46P31vP #MECFS #ACSM
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We want to know about your experience of using the Access to Work scheme. If you have had help in the last 2 years, we want to hear from you. We want to see if the scheme works! DPCG have now created a BSL version of their current survey, available here: surveymonkey.com/r/LPKT8PH
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