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Action for ME

@actionforme.bsky.social

Providing support & holistic healthcare services to people of all ages affected by #MECFS. Charity number: 1036419 / SC040452

647 Posts620 Follower14 Folgt
Action for ME@actionforme.bsky.social · 2mo ago

Join our third PRIME workshop to learn more about post-exertional malaise (PEM). PEM is the hallmark symptom of ME, where physical or mental activity can cause a delayed worsening of symptoms, often hours or days later. This can include debilitating fatigue, pain, brain fog, and flu-like symptoms.

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Action for ME@actionforme.bsky.social · 3mo ago

A huge THANK YOU to everyone who supported our BBC Lifeline Appeal by sharing, commenting, donating and helping raise awareness of ME 🧡 While our appeal has now finished on the BBC, the impact continues.

Graphic from Action for ME detailing the impact of their BBC Lifeline Appeal campaign, which has now come to an end.Graphic from Action for ME detailing the impact of their BBC Lifeline Appeal, including statistics from their social media pages.Graphic from Action for ME detailing the impact of their BBC Lifeline Appeal, including the audience that they reached.Graphic from Action for ME detailing the impact of their BBC Lifeline Appeal, including numbers regarding how many people joined the community.
Action for ME@actionforme.bsky.social · 3mo ago

📢 Join the PRIME ME/CFS Research Involvement Hub! Today, PRIME have launched their new ME/CFS Research Involvement Hub which aims to build a virtual network of people with lived experience of ME and match them with research projects to help shape the delivery of those projects.

Simon McGrath@simonmcg.bsky.social · 3mo ago

The science behind this ground-breaking #MEcfs study - congratulation sand thanks to @actionforme.bsky.social @cgatist.bsky.social Andy Devreeux-Cooke @nanoporetech.com and others mecfsresearchreview.me/2026/05/12/d...

DNA sequencing study to help pinpoint biology of ME gets £4.7m

The UK government has given nearly £5 million to fund full sequencing of the DNA of 6,000 people with ME using the best available technology. This will help scientists home in on what is really dri…

mecfsresearchreview.me

Action for ME@actionforme.bsky.social · 3mo ago

🚨 Major funding secured for Sequence ME & Long Covid, a DecodeME project. On #WorldMEDay, we’re thrilled to share that the study has received £4.75 million from the UK government, signalling a transformative step towards uncovering the biological roots of ME/CFS and Long Covid.

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Action for ME@actionforme.bsky.social · 3mo ago

1/2 🚨 People with ME need your help. ME is a devastating and misunderstood disease, with its symptoms affecting an estimated 1.35 million people in the UK. For many, it means not only losing their health, but also their independence and the life they once knew. #pwME #MECFS ⬇️

Image of bed with rumpled sheets in low light with text: “5 things everyone should know about ME.”Graphic with text “ME can affect anybody, at any time. Most people with ME had very full, healthy lives before getting sick.”Alt text: Graphic with text: “ME steals lives. It is profoundly disabling and has one of the worst qualities of life of any disease.”Graphic with text: “1 in 4 people with ME are severely affected, unable to leave the house or their bed.”
Action for ME@actionforme.bsky.social · 3mo ago

1/2 🚨 Our BBC Lifeline Appeal video is live! Missed the screening earlier on BBC One? Head over to our BBC Lifeline Appeal page to watch it and don't forget to share 👇 www.bbc.co.uk/iplayer/epis... #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #BBCLifelineAppeal ⬇️

Lifeline - Action for ME

Montell Douglas presents an appeal on behalf of Action for ME, a charity that provides support and advocacy for people of all ages affected by ME.

bbc.co.uk

Action for ME@actionforme.bsky.social · 4mo ago

We're delighted to announce Montell Douglas as our BBC Lifeline Presenter! Montell will feature in our 9-minute video, alongside our CEO, Sonya Chowdhury, and the real stories of Andrea, Alice and Isla, and Mark who will be sharing their experiences of living with ME.

Graphic with Montell Douglas sharing a quote about raising awareness of ME, highlighting that it is widely misunderstood. Action for ME branding included.