Nicky Proctor

A graphic announcing that Action for ME has become the newest affiliate charity partner of Our Future Health. It shows two hands holding a card with the Action for ME logo, surrounded by a yellow and navy patterned border.

A graphic featuring a quote from Dr Raghib Ali, CEO and Chief Medical Officer of Our Future Health, welcoming Action for ME as an affiliate charity partner and highlighting their shared aim to help people live longer, healthier lives.

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We're excited to announce that we've joined as an affiliate charity partner of Our Future Health, the UK's largest health research programme!

We'll support Our Future Health to ensure their programme serves the research needs of a range of health conditions & diseases, incl. ME

#pwME #MECFS

Incredible talk here at the #UNGA80 #indoorair call to action from our very own Violet Affleck! Reminding us that #longcovid affects all of us, the #covid19 pandemic is ongoing and we have failed to protect our children. Thank you, Violet, for speaking the truth to this room 🙏🏻

Commissioning an NHS service for very severe ME Perspectives from carers and clinicians

www.thereforme.uk/p/commission...

Speech bubble with “What would an NHS service for very severe ME look like?” At the bottom of the image: “Perspectives from carers & clinicians. #ThereForME”

Today's #ThereForME blog shares findings from a mini survey.

We asked carers and clinicians with experience supporting people with v severe ME whether the Health Secretary should commission a service for v severe ME - and if so, what it should look like.

Link in next post 👇

Commissioning an NHS service for very severe ME Perspectives from carers and clinicians

Want to understand the #GreatestMEdicalScandal in one sentence?

"Most said they would be unsure about accessing a specialist service due to the risk of inappropriate care causing harm to their loved one"

Read it in the latest @thereforme.bsky.social update --> www.thereforme.uk/p/commission...

Get In Touch With Your MP - #SafeAir4All All healthcare workers and every patient in the UK has the right to feel safe and protected in any healthcare setting

#SafeAir4All
In collaboration with @gmhazardscentre.bsky.social we've produced a fact sheet for MPs. #SafeAir4All campaign
Can you contact your MP about the need for safe air in healthcare settings?

Find out more here: shh-uk.org/get-in-touch...

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’.

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📢 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

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Thinking of Savannah and hoping all clinicians and advocates can work together “at pace” (as government likes to say) for her best interests in accordance with needs of someone with severe ME.
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🌟 Exciting News!
We’re thrilled to announce the upcoming YE International Workshop Series – Vienna 2025 🎉

📍 Vienna, Austria
📆 27–28 November 2025

Join us as we bring together early career researchers in #MECFS to connect, collaborate & spark new ideas! 🔬✨

#SaveTheDate #MECFS #MEresearch #ECR

Martha's rule rolled out to all acute hospitals in England Hundreds of patients have been helped by rule, which makes it easier to get an urgent second opinion.

Martha Mills was one of my favourite people. She should have had her 18th birthday today. Her parents have campaigned tirelessly to improve healthcare so that others won’t experience what they did. They are heroes.

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 🙏

Medical care for ME now Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.

Hopefully APPG are aware of this.

www.crowdjustice.com/case/justice...

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...

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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.

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📢 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

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A person lies supported by pillows, surrounded by a beautiful landscape that is now beyond their reach due chronic ME illness

🔥 Please share - Very important care campaign for those with severe & very severe ME:

"Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness"

#pwME ♥️💙🫂

www.crowdjustice.com/case/justice...

The Bear Tapestry

People without #MECFS have been asking why this project is called Lives We Cannot Live. #PwME

Showing at Oxo Tower Gallery London from 24/9/25
More info mailchi.mp/16f8611232cc...

#socialdocumentary #documentaryphotography #invisibleillness

Can science crack the mystery of ME? Podcast Episode · Science Weekly · 21/08/2025 · 19m

Very grateful to the @theguardian.com Science Weekly team and of course the excellent @decodemestudy.bsky.social for this breakthrough science.
podcasts.apple.com/gb/podcast/s...

Sign the Petition The NHS must take measures to STOP Dill deteriorating

Any chance you could alert Leeds Hospital to this please, shared by MEAssociation (a rare endorsement for an individual’s case).

www.change.org/p/the-nhs-mu...

Posthumous album of singer Kara Jane released on Severe ME Awareness Day - The Sick Times This month, on August 8, the posthumous album of a young singer was released to mark Severe ME Awareness Day. Kara Jane, from Derbyshire in the U.K., had myalgic encephalomyelitis (ME) for most of her...

Late singer Kara Jane's family has released her album "In Limbo" posthumously on #SevereMEday 💙.

Read more about Kara, the album, and the impact of severe ME in this wonderful article by @naomiwhitt.bsky.social in @thesicktimes.org.

thesicktimes.org/2025/08/08/p...

Thanks to Emily Dugan and the Sunday Times for exposing this aspect of how Maeve died from ME. A Devon County Council cover up. Maeve was taking them to judical review, dying in the attempt.
Devon County Council may have learnt nothing from the inquest. I have learnt a lot about them.
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The Coroner (a DCC employee based at County Hall) refused to call the key witness from social services. Juliette Hill could have prevented Maeve's premature death if she had been guided by her statutory duty to protect the most vulnerable in society. Hill was under investigation by Social Work
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As my daughter died of ME, the state met in secret to blame me Maeve Boothby O’Neill’s mother had no idea she was being accused in private of causing or fabricating the illness that would take her life aged 27

Safeguarding records for the final year of Maeve’s life show social workers, nurses and a mental health assessor, instead of focusing on managing Maeve’s ME, were investigating concerns about Boothby.
(£) www.thetimes.com/uk/healthcar...
#MEcfs #LongCovid

Graphic 1 of 4. DecodeME: The Results graphic. The slide says: ‘The signals discovered are involved in the immune and nervous systems, indicating immunological and neurological causes to this poorly understood disease’.

Graphic 2 of 4. DecodeME: The Results graphic. The slide says: ‘At least two of the signals relate to the body’s response to infection’. Beneath this is an image of green germs.

Graphic 3 of 4. DecodeME: The Results graphic. The slide says: ‘Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS’. Beneath this is an image of a person curled up in bed feeling ill.

Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘All of these signals align with how people with ME/CFS describe their illness’.

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Graphic 1 of 4. DecodeME: The Results graphic. At the top in bold lettering, it says ‘Main Findings’. Beneath this it says ‘Your genes contribute to your chances of developing ME/CFS. Other key findings are on the following slides.

Graphic 2 of 4. DecodeME: The Results graphic. The slide says ‘People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population’. Beneath this is an image of a DNA helix and a magnifying glass.

Graphic 3 of 4. DecodeME: The Results graphic. The slide says ‘These lie in many places across the genome, and do not impact just one gene’. Beneath this is an image of a DNA helix and graphs.

Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS’. Beneath this is a blue magnifying glass with a DNA helix.

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more.

These findings reflect the lived experience of thousands of #pwME.

Thanks to all our participants & supporters who made this possible!

Read a summary of our results: shorturl.at/pgsjk

Katie is typing notes onto a laptop.

We are listening to the experiences of people in Leeds living with multiple long-term health conditions.

Katie and Jude have been working with us to carry out interviews and gather people’s stories.

You can share your experiences too: re-url.uk/W4TL

#HealthwatchLeeds #LongTermConditions

Especially in the light of DecodeME results issued today by Prof Chris Ponting and team at Uni of Edinburgh!

Sign the Petition The NHS must take measures to STOP Dill deteriorating

Any chance you could alert Leeds Hospital to this please, shared by MEAssociation (a rare endorsement for an individual’s case).

www.change.org/p/the-nhs-mu...