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Severe ME Difrifol Cymru @severemecymru.bsky.social · 12h

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: [email protected]

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www.500milesfor.me

@wamesmecfs.bsky.social @meassociation.org.uk
@actionforme.bsky.social

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...

www.500milesfor.me

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 14h

The Family Fund's grant programme is open to families living in Wales who are raising a disabled or seriously ill child, aged 17 or younger, on a low income. Limited funding. Closes Mon 3 Nov.
tinyurl.com/yscdz2s4

Wales grant programme now open for applications - Family Fund

We’re now accepting applications for the Wales grant programme, funded by the Welsh Government and wider funders.

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 14h

David Tuller talks to Prof Chris Ponting about PRIME, a UK project to increase infrastructure for ME/CFS research. [15 mins] +Transcript
tinyurl.com/3f87fcd6

Interview with Chris Ponting about PRIME, a project to increase infrastructure for ME/CFS research

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tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 14h

UK Health Security Agency gives advice on how to tell if you have flu, COVID-1, RSV or a cold? Know the signs and symptoms.
tinyurl.com/3xb3je4j

Do I have flu, COVID-19 or a cold? Know the signs and symptoms

This blog post is an explainer of important information about these winter infections; their signs and symptoms, and information on who is eligible for vaccination.

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 14h

UK Gov's Coronavirus Act 2020 removed disabled children’s statutory right to care, leaving families fighting for support when local authorities provision of education, health and care plans (EHCPs) was no longer mandatory, the COVID-19 Inquiry learns.
tinyurl.com/4sxhzad4

Government removed disabled children’s rights during the pandemic,

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 14h

Dr Jarred Younger discusses a new study on the role of ketamine in controlling chronic pain. [16 mins] +Transcript
tinyurl.com/36jxanh6

075 - Ketamine treatment in difficult chronic pain cases

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 14h

Dr Lucinda Bateman gives information about Orthostatic Intolerance Syndrome (OIS) and strategies for managing it. [48 mins] +Chapters +Transcript
tinyurl.com/mj6z7zsj

Orthostatic Intolerance: Clinic Assessment and Treatment

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 1d

Astriid gives info on how to tackle disability discrimination for people with a long-term health condition, and how to access additional support. Barriers include: being excluded during recruitment; difficulties securing workplace adjustments; climbing the career ladder.
tinyurl.com/bdet64md

Disability Disclosure And Discrimination In The Workplace - Astriid's Guide For People With Long-Term Health Conditions | Astriid

If you have a long-term health condition, you may encounter disability discrimination during your working life. Here's how we can tackle it.

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 1d

A new multi-centre study, co-authored by Dr Lucinda Bateman, sheds light on why even small amounts of activity can leave people with ME/CFS feeling much worse. This hallmark symptom is post-exertional malaise (PEM). They outline several possibilities for future therapies.
tinyurl.com/4ks6zdtm

When the Body’s Alarm Won’t Turn Off

Blog Summary Imagine if a fire alarm kept ringing long after the smoke was gone. That’s similar to what happens in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), where the body seems…

tinyurl.com

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 1d

Back to work efforts by the DWP are failing dismally, according to a report by the BBC. Work coach appointments with each jobseeker last just ten minutes, the number of work coaches has been reduced & a smaller proportion of claimants are finding work each month.
tinyurl.com/3xd5vx5z

Stretched job centre staff struggling to get disabled people into work

The government wants work coaches to provide personalised support, but some have caseloads of up to 200 people.

tinyurl.com

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 1d

A study measuring the effect of pacing with a heart rate monitor with a combination of physical & questionnaire-based measures & interview methods found that people with ME/CFS & LC continue to use an HRM after the end of the study, which suggests they find it beneficial.
tinyurl.com/mt85hnea

Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study

People living with ME/CFS and LC frequently live with post-exertional malaise (PEM), which is associated with impairments in aerobic metabolism. They often use pacing with a heart rate monitor (HRM...

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 1d

Unhide: The unified platform, advancing research across ME/CFS, Long COVID and other chronic conditions. Introduces the Solve Together research Platform, a participant-led continuous digital data collection. Tues 14 Oct, 11:00 PM UK
tinyurl.com/yf8was3j

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 1d

Small fibre neuropathy (SFN) affects nerves outside of brain and spinal cord. Research suggests SFN occurs more frequently in ME/CFS and other conditions associated with dysautonomia. MERUK explains.
tinyurl.com/44jcdjv8

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 4d

The MEA have updated their booklet on flu vaccines to help people with ME/CFS to decide whether you ought to have the jab against this potentially unpleasant and even harmful illness.
tinyurl.com/27r2may9

Updated Booklet: Flu Vaccination & ME/CFS 2025/2026 - The ME Association

We have released an updated version of our flu information […]

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 4d

The Access to Work scheme is failing disabled people & has caused them “real harm”, with some support cut by 80%, according to a detailed dossier of evidence prepared by Action on Disability. This has been sent to the National Audit Office for its investigation into AtW.
tinyurl.com/mrx6khta

Access to Work dossier of evidence shows ‘real harm’ and job losses caused by DWP cuts and failings

The Access to Work scheme is failing Deaf and disabled people, and its “decline” in the last two years has caused them “real harm”, with some support packages cut by 80 per cent, according to a det…

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 4d

Australian ME researcher Sarah Annesley finds the discovery of a diagnostic blood test for ME/CFS promising and much needed, as early diagnosis & rest is key to recovery. She outlines the further research needed to make this 'proof-of-concept' study reality.
tinyurl.com/2uvct66n

Can a new blood test really detect ME/CFS? An expert unpacks new research

Diagnosis for myalgic encephalomyelitis/chronic fatigue syndrome currently relies on sometimes controversial diagnostic criteria – and can take years.

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 4d

MERUK explores a study of specialised care for people with severe ME in a private clinic in Norway which uses a four-step supportive therapy programme. Not all patients experienced an improvement in disease severity but symptoms were not reported to worsen for anyone.
tinyurl.com/323t2hj5

Specialised care for people with severe or very severe ME/CFS in Norway

Røysumtunet, a private clinic and not for profit institution founded in 1965 in Norway, is primarily known for providing care to patients with severe epilepsy. However, in recent years, the institutio...

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

Still time to ask your local Constituency/Regional MSs: to take part
senedd.wales/find-a-membe...

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.

senedd.wales

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

Debate in the Senedd next Wed 15 Oct to discuss Severe ME & services for ME generally - Adam’s Price MS Motion 8884
record.senedd.wales/Motion/8884

Motion - NDM8884 - Welsh Parliament

The Welsh Parliament is the democratically elected body that represents the interests of Wales and its people.

record.senedd.wales

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

The Big Issue explains the energy price rises taking place this month, with suggestions on how to cope.
tinyurl.com/bedsncwx

Energy bills to rise in UK as price cap increases. Here's how to get help

This is everything you need to know about how much energy bills are going up along with Ofgem's energy price cap – and where to get help.

tinyurl.com

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

Lives We Cannot Live, a photographic exhibition by documentary film-maker & photographer Jeremy Jeffs is now on YouTube as a virtual walk-through [4 mins] "The images displayed were a powerful representation of people who often feel invisible and lost by society"
tinyurl.com/36y2xxn7

Photography Exhibition 'Lives We Cannot Live' Walkthrough

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

Prof David Putrino presents pilot trial on rapamycin in Long COVID. Macrocyclic antibiotic & m-TOR inhibitor has immunosuppressive effect in high doses. Aim is 2 identify suitable biomarkers of tx-responsive subjects & plan larger study[14mins]+Transcript
tinyurl.com/52sr63jp

David Putrino | International ME/CFS Conference 2025: Low-dose Rapamycin for Long COVID

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

tinyurl.com

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wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

David Tuller is crowdfunding for his salary & expenses. He outlines the many ways in the past year he has challenged the promotion of psycho-behavioral interventions & inappropriate FND diagnoses, exposed research & reporting errors, and promoted positive research. Ends 7 Nov.
tinyurl.com/ymj5x78r

David Tuller's Trial by Error Fall 2025

Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Fall 2025. Your gift will make a difference!

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

ME Centraal reports death by euthanasia of 32 year old Dieuwertje de Wit, after 14 years of 'unfair battle with the disease ME'. "We are sad that she is no longer here, but there is also relief that her suffering is over."
tinyurl.com/25e3c2kx

In Memoriam: Dieuwertje de Wit (✰ 1 september 1993 † 26 september 2025)

Bezoek het bericht voor meer.

tinyurl.com

wamesmecfs.bsky.social @wamesmecfs.bsky.social · 5d

The next APPG meeting will be held on 23 Oct. Invitations have been sent to all existing members of the APPG. The meeting will continue on from the last evidence hearing session as part of the Groups Severe ME Inquiry.
tinyurl.com/yr5m6pp2

Meetings - All-Party Parliamentary Group on ME

Meetings

tinyurl.com