Action for ME

This includes building strategic partnerships and securing further funding.

Reaching this stage marks an important step forward, enabling scientific research at the scale people with ME and Long Covid need, giving hope for change.

🔗 Read more: www.actionforme.org.uk/research-cam...

We’re grateful to our partners, the @schmidtinitiative.bsky.social and the Complex Disorders Alliance (CODA), whose early funding has helped kickstart phase one.

With 9000 samples already in place through DecodeME, our focus now turns to putting all the foundations in place for the study.

Image of a DNA double helix against a soft blue background with light particles. The Action for ME logo appears in the top right corner. Text on the image reads: “Research News – SequenceME and Long Covid study launches. The world’s largest long-read, whole-genome study of any disease.”

Quote from Action for ME CEO Sonya Chowdhury.

Quote from Complex Disorders Alliance CEO Amy Rochlin.

Quote from Schmidt Iniative for Long Covid CEO Dr John Redd

Today we’re delighted to launch Sequence ME & Long Covid - the world’s largest long-read, whole-genome study of any disease 🔬
🧬 This £20 million ground breaking initiative will explore the root causes of ME and Long Covid, with the aim of accelerating progress towards diagnostics and treatments.

Smiling runner holding up her finisher’s medal, surrounded by other runners, with text overlay: “Take part in the Great North Run in aid of Action for ME – 1 week left to apply!” and the Action for ME logo.

One week left to apply to take part in the Great North Run for Action for ME!

Taking place on 13th September, the Great North Run is an epic half marathon with around 60,000 participants.

Find out more on our website: www.actionforme.org.uk/great-north-...

Policy News: Tom Morrison MP joins our Parliamentary Champions network and APPG on ME. Image of Tom and Action for ME logo.

Quote from Tom Morrison MP.

We're delighted to welcome @tommorrisonmp.bsky.social to our Parliamentary Champions network! Tom will also be joining the APPG on ME.

We would like to thank Tom for his dedication to supporting people with ME and we look forward to working with him.
Read more www.actionforme.org.uk/campaign/par...

Please send any additional info to policy@actionforme.org.uk

Thank you :)

Hi @lucibee.bsky.social - thank you for sharing this and for taking the time and energy to submit the FOIs. Are you happy for us to formally pass this on to the APPG on ME to be used/referenced in their work? Best, Josh

Thanks to The Times for highlighting Savannah’s story and the critical issue that there is no specialist NHS service for very severe ME. Grateful to Ashley Dalton for our recent brief call but still waiting for progress report re ME Plan commitment to explore such a service, including treatments.

Graphic promoting Children’s Mental Health Week by Action for ME. Text in top half details how Action for ME support young people with ME through their Young People’s Counselling and Community Service. Photo in bottom half shows a young person on their phone with Children's Mental Health Week logo.

This week is #ChildrensMentalHealthWeek with Place2Be.

1 in 5 children face mental health challenges.

We support children & young people with ME with our FREE Young People’s Counselling & Young People’s Community. More info 👇

www.actionforme.org.uk/18-and-under...

Graphic promoting Children’s Mental Health Week by Action for ME. Text in top half details how Action for ME support young people with ME through their Young People’s Counselling and Community Service. Photo in bottom half shows a young person using a laptop with Children's Mental Heath Week logo.

This week we’re supporting #ChildrensMentalHealthWeek with Place2Be.

We’re here to support children & young people with ME through our FREE Young People’s Counselling & Young People’s Community. More info 👇

www.actionforme.org.uk/18-and-under...

Photo of representatives from the Overlapping Illness Alliance at their recent in person meeting.

Partners across the Overlapping Illness Alliance (OIA) recently came together in person to reflect on our shared priorities, review recent advocacy activity and agree next steps for our collaborative work.

We'll share more as it develops! Learn about the OIA: www.overlappingillnessalliance.org.uk

Graphic promoting Children’s Mental Health Week by Action for ME. Text in top half details how Action for ME support young people with ME through their Young People’s Counselling and Community Service. Photo in bottom half of a child smiling with Children's Mental Health Week logo in bottom left.

This week is #ChildrensMentalHealthWeek with Place2Be.

We’re here to support children & young people with ME through our FREE Young People’s Counselling & Young People’s Community. More info 👇

www.actionforme.org.uk/18-and-under...

Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis/chronic fatigue syndrome or control serum Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome is a disease of uncertain aetiology that affects up to 400,000 individuals in the UK. Exposure of cultured cells to the sera of people with ME...

1/3 Now published: We performed a large-scale replication testing the effect of serum from 67 pwME and 53 healthy donors on muscle cell mitochondria, revealing no significant differences. This suggests earlier results may not be true for people with ME in general. doi.org/10.1371/jour...

Action for ME graphic celebrating 5,113 people taking part in the Big Survey, with a thank-you message and heart illustration.

Thank you so much to over 5,000 of you who took part in our Big Survey! 🙌

We're so grateful for the time and energy you gave us in sharing your experiences, and providing insight into life with ME 🧡

📣The recording from the PRIME webinar is now available!

Our apologies, due to a technical error, the captions file wasn't saved and we don't have capacity to generate them ourselves given the webinar's length.

🔗 Watch the recording on our YouTube: www.youtube.com/watch?v=1sVb...

We're delighted to welcome Lee Barron MP to our Parliamentary Champions network! 🤝
We would like to thank Lee for his dedication to supporting people with ME and we look forward to working with him.
Read more about our Parliamentary Champions network: www.actionforme.org.uk/campaign/par...

4/4

The Secretariat will meet with Tessa & her team next week to agree upcoming meeting date. These will be shared on the website so you can invite your MP in advance.

AGM documents & minutes from the Dec 25 meeting will also be uploaded once approved.

#MyalgicE

3/4 We'd also like to sincerely thank Jo Platt MP & her office for serving as the APPG’s most recent Chair & leading the group since its reconstitution in 2024.

We're very pleased that Jo will continue to support the APPG as an Officer & look forward to working closely with her.

#pwME #APPG

⬇️

2/4

We are delighted to be working more closely with Tessa and are so thankful for her ongoing commitment to the ME community.

#ME #MECFS

⬇️

Panoramic image of the Houses of Parliament and Big Ben under a blue sky. Logos for Action for ME, the ME Association and the APPG on Myalgic Encephalomyelitis appear at the top. Text reads: “APPG on ME update: Annual General Meeting and 2026 schedule”.

The Chair, officers, and members of the APPG on ME stand alongside representatives from the joint-Secretariat, at the group's 2026 AGM.

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📢 APPG on ME announcement

As many of you will already be aware, @tessamunt.bsky.social MP has officially been appointed Chair of the APPG on ME, following the group’s Annual General Meeting last week 🤝

#APPG #MyalgicEncephalomyelitis

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If or when we are given permission to share further updates, we will do so. Until then, we appreciate your patience and respect of Savannah’s privacy.

However, with Savannah’s consent, we can confirm that our Chief Executive, Sonya, is personally acting as Savannah’s advocate and is actively supporting her case. Again, we are unable to discuss this further at this stage.

We are unable to discuss referrals into our Support Services, including our Advocacy Service, in order to maintain confidentiality. This is something that we are required to take very seriously and so we won’t be commenting further on this.

Thank you for taking the time and energy to get in touch to raise awareness about Savannah’s current condition and treatment.

Please be assured that we share the serious concerns that yourself and others within the ME community have raised (cont.)

If or when we are given permission to share further updates, we will do so. Until then, we appreciate your patience and respect of Savannah’s privacy.

However, with Savannah’s consent, we can confirm that our Chief Executive, Sonya, is personally acting as Savannah’s advocate and is actively supporting her case. Again, we are unable to discuss this further at this stage.

We are unable to discuss referrals into our Support Services, including our Advocacy Service, in order to maintain confidentiality. This is something that we are required to take very seriously and so we won’t be commenting further on this.

Hi Michiel, thank you for taking the time and energy to get in touch to raise awareness about Savannah’s current condition and treatment.

Please be assured that we share the serious concerns that yourself and others within the ME community have raised. (cont.)

If or when we are given permission to share further updates, we will do so. Until then, we appreciate your patience and respect of Savannah’s privacy.

However, with Savannah’s consent, we can confirm that our Chief Executive, Sonya, is personally acting as Savannah’s advocate and is actively supporting her case. Again, we are unable to discuss this further at this stage.