Action for ME

3/3

Prof Chris Ponting of @decodemestudy.bsky.social flagged the need for the test to be fully validated by better-designed studies & said some claims made by the researchers were "premature"

#MECFS #MyalgicE #MyalgicEncephaloymelitis

2/3

They examined blood samples from 47 patients with severe ME/CFS & 61 healthy adults, discovering "a unique pattern" that appeared consistently in #pwME & not the healthy controls

A test was developed & reported a 92% sensitivity (likelihood of a positive test if that patient has the condition)

A researcher wearing a mask, gloves, and a lab coat holds up a blood sample tube for examination. The image includes the Action for ME logo and a headline stating, “Researchers say they have developed the first accurate blood test to diagnose ME.

1/3

🔬 Research news

Researchers at the University of East Anglia say they have developed the world's first blood test to diagnose ME

However, whilst acknowledging the research as an "interesting development", other researchers have offered cautionary responses to the results

#pwME #MEResearch

⬇️

Headshot of Cat Smith MP, who has shoulder-length blonde hair and glasses, smiling against a grey background. The Action for M.E. logo appears in the top right corner. Below, a banner reads: “Policy news – Cat Smith joins our Parliamentary Champions network.”

A statement from Cat Smith MP on joining Action for ME as a Parliamentary Champion. She speaks about hearing from constituents about the devastating impact of ME, recognising the overlap with other long-term illnesses, and the need for more awareness, research, and joined-up care.

We are delighted to welcome @catsmithmp.bsky.social as our newest Parliamentary Champion!

We would like to thank Cat and we look forward to working with her. Read more here: www.actionforme.org.uk/cat-smith-mp...

Watch the recording from our 2024/25 Annual General Meeting. Action for ME 2024/25 Annual General Meeting

The recording from our 2025 AGM is now available to view on our YouTube channel!

🎬 youtu.be/N0mRuePXMgQ

And, in case you missed it, you can also find a copy of our most recent Annual Report & Accounts in the 'Resources' section of our website.

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis

📢 2 weeks left to sign up for the Bath Half in aid of Action for ME!

Applications close on 12th October - don’t miss your spot at one of the UK’s most prestigious half marathons 👟

Find out more and apply for a place: GetPRO Bath Half Marathon - Action for ME

Poster for Action for ME, ME Association and APPG on ME. Background shows UK Parliament and Big Ben. Green icon of an envelope with text: “Invite your local MP!” Below: “APPG on ME – October meeting: Continuation of the Severe ME Inquiry.”

📢 Invite your MP to the next APPG on ME meeting!

📆 Thurs 23 Oct, 11am–1pm

The session will follow the Severe ME Inquiry evidence session, with MPs drafting recommendations for a formal report.

✉️ Updated invite template via APPG site: appgme.co.uk/contact-your...

Action for ME fundraising graphic featuring Iara De Sousa and her partner smiling during the Thames Bridges Trek, where they raised £690. Text highlights gratitude for their Ultra Challenge fundraising efforts.

This #FundraisingFriday, we are celebrating the brilliant Iara De Sousa and her partner who walked the Ultra Challenge Thames Bridge Trek in aid of Action for ME, surpassing her fundraising goal to raise £690!

Action for ME policy news graphic showing the empty, modern wooden debating chamber of the Scottish Parliament with text announcing Learn about ME to receive funding for another year - helping more professionals understand ME

Good news! Learn about ME has been awarded £33,366 from the Scottish government to continue for another year.

Read the full response to Alex Cole-Hamilton's question 👇 tinyurl.com/4f66ub79

Graphic showing Big Ben and the Palace of Westminster with logos for Action for ME, the ME Association, and APPG on ME. An icon of documents is centred. Text reads: “APPG on ME - 10 September 2025 meeting minutes now available."

📢 APPG on ME

The minutes from the 10 September APPG meeting are now available on the APPG’s website 👇 

appgme.co.uk/meetings/app...

Thank you to those with lived experience who used their valuable time and energy to provide evidence as part of the Severe ME Inquiry 🧡

#pwME #MECFS #MyalgicE

Cover of Action for ME’s Annual report and accounts 2024/25. The design features bold orange and yellow waves at the top, the charity’s logo bottom right, and a photo of artist Alison Larkman with her artwork I would be here if I could by Sasha Snow.

We're pleased to share our 2024/25 Annual Report & Accounts!

The document outlines the progress we've made against our strategy, alongside demonstrating the impact our work has for #pwME

Available on our website 👇

www.actionforme.org.uk/resource/act...

#MECFS #MyalgicE #MyalgicEncephalomyelitis

Join us for our 2025 Annual General Meeting (AGM) - Action for ME All are welcome at our 2025 Annual General Meeting! Find out more on the agenda, submitting questions, and registering to attend.

2/2

For more information and to sign up, visit our website👇

www.actionforme.org.uk/our-2025-agm/

Graphic announcing Action for ME’s 2025 AGM. Details: Wednesday 17 September, 3pm–4.15pm, online. Bold orange banner reads ‘1 week to go!’ with Action for ME logo at the bottom.

1/2

Just 1 week to go until our 2025 Annual General Meeting (AGM)!

The Meeting will be held online (Zoom) & the recording will be shared soon after the meeting for those unable to attend.

📆 Wednesday 17 September

🕒 3pm - 4.15pm

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis

⬇️

Promotional graphic for Action for ME’s ME Friends Online Forum. Text in the upper half describes who the forum is for and what it offers. In the lower half is a photo of a man using a tablet. Action for ME logo in top right corner and QR code in bottom right corner.

Our ME Friends Online forum is a community for adults with ME, including carers, where you can connect with others who share your experiences.

Sign-up here 👇

www.actionforme.org.uk/sign-up/

All users must abide by our Terms of Use!

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #PeerSupport

5/5

A big thank you to Tom and his office for working with us to bring these concerns to the House’s attention 🤝

✍️ Please tag or contact your local MP, asking them to sign and show their support for the EDM!

4/5

▪️ Limited attention given to severe ME, with no guarantees on specialist care provision

▪️ Lack of robust accountability & resources to improve care, support & outcomes for #pwME

⬇️

3/5

▪️ The omission of a dedicated ME research hub & strategic funding

▪️ Lack of sufficient accountability for implementing services & updating medical education in line with NICE guidance

⬇️

2/5

The EDM references the need for the Plan and the work of everyone involved in its publication to be welcomed by the House, but also to recognise that the Plan falls short in a number of areas, including:

⬇️

Graphic from Action for ME showing the Houses of Parliament with Big Ben. Text reads: ‘Policy news – Early Day Motion on the Final Delivery Plan on ME/CFS tabled by Tom Morrison MP’.

1/5

📢 Early Day Motion (EDM) tabled on the Final Delivery Plan

We’re pleased to see this EDM tabled by @tommorrisonmp.bsky.social to discuss the Final Delivery Plan on ME/CFS.

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #EDM

⬇️

Smiling runner wearing an Action for ME vest and race bib number 27615 during the Great North Run, surrounded by other participants. Text overlay reads: “Wishing the best of luck to our Great North Run team today!” with a “Go Team” graphic.

Wishing our amazing Great North Run team the best of luck this weekend! 🙌

From all of us here, we'd also like to thank them for their dedication to raising funds to support our work & raising much-needed awareness of #MECFS 🧡

#pwME #MyalgicE #MyalgicEncephalomyelitis #GreatNorthRun

📢🏴󠁧󠁢󠁷󠁬󠁳󠁿

If you live in Wales, contact your MSs, asking them to support Adam Price's motion for a severe/very severe ME debate in the Senedd!

Details on how you can help below 👇

tinyurl.com/mxd3w28z

@severemecymru.bsky.social

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis

Following @decodemestudy.bsky.social's success, it's vitally important that the Government commits to strategic research funding & we'll continue our calls for a national research platform

Thank you @johnmilnehorsham.bsky.social for leading on this call to the Secretary of State 🙏

2/2

Those giving evidence have been identified via service users, the 25% ME Group & wider networks.

Evidence will be shared in written, recorded or live formats. Minutes will be published after on the APPG website.

#pwME #MyalgicEncephalomyelitis #APPG

Poster with logos of Action for ME, the ME Association, and APPG on ME. Background shows Big Ben and the Houses of Parliament. A pink box with an envelope icon reads “Invite your MP!” Text below: “APPG on ME meeting: severe ME enquiry. Wed, 10 September, 4pm–5pm.

1/2

📢 APPG on ME

📆 Wed 10 Sept | ⏰ 4pm

The Group will open its enquiry into severe ME, hearing directly from people with lived experience.

👉 Ask your MP to attend: appgme.co.uk/contact-your...

#SevereME #MECFS

⬇️

Seeking a Project Manager for the PRIME project:
"Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)". Closing date for applications is 15 September 2025. #pwME #MEcfs
elxw.fa.em3.oraclecloud.com/hcmUI/Candid...

Graphic promoting Action for ME’s Adults Advocacy Service. Text in top half: ‘Our free Adults Advocacy Service is here to help you secure your rights and access the services you are entitled to.” Quote from service user about how the service has helped them. Action for logo in top right corner.

Our FREE Adults Advocacy Service, available for adults with ME in the UK, is here to help you secure your rights & access the services you're entitled to

There is currently no waiting list!

More info & to self-refer 👇

www.actionforme.org.uk/supporting-y...

#MECFS #Advocacy #DisabilityRights

Action for ME announcement for the 2025 AGM. Date: Wednesday 17 September, Time: 3pm–4.15pm, Location: Online. Registration now open.

Registration is now open for our 2025 AGM!

A recording will be shared soon after the meeting for those unable to attend.

📆 Wednesday 17 September

🕒 3pm - 4.15pm

More info & registration 👇

www.actionforme.org.uk/our-2025-agm/

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis

Our forum is open to adults affected by ME in the UK.

Join today 👇

www.actionforme.org.uk/sign-up/

All forum users must abide by our Terms of Use & existing users will need to re-register on our new website.

#pwME #MECFS

Promotional graphic for Action for ME’s ME Friends Online Forum. Text in the upper half describes who the forum is for and what it offers. In the lower half is a photo of a man using a tablet. Action for ME logo in top right corner and QR code in bottom right corner.

We know that living with ME can make it hard to maintain relationships with friends & family, leading to feelings of isolation & not being understood.

Our ME Friends Online forum is a supportive community of people affected by ME who understand what it’s like to live with ME.