Author | Lightnews

Nicky Proctor @nickyproctor.bsky.social · 16h

From people who did LP:

“Then they tell you that it’s your own fault for having ME, because you’re doing ME. I became physically exhausted and unwell, and felt guilty because you would have to be pretty stupid when you’re making yourself ill.”

Nina Steinkopf @ninasteinkopf.bsky.social · 17h

More than 40 ME patients share their experience with the Lightning Process: lp-fortellinger.no/en/lp-stories/

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Action for ME @actionforme.bsky.social · 2d

We recently launched our Big Survey! 🎉

We’ve already had over 2000 responses - thank you to everyone who’s taken part so far 🧡

Take part, read our FAQs, and find out more here: www.actionforme.org.uk/research-campaigns/our-research-work/big-survey/

A quote from Andy Devereux-Cooke, PPI Partner for The Big Survey. The quote reads: “In the same way that we, as a community, need biomedical research, we also need the information about us that will be collected by this year's Big Survey. Knowing, in broad terms, who the patient population currently are, and what their experience is of living with ME/CFS, will be invaluable in guiding advocacy and research.”

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Nicky Proctor @nickyproctor.bsky.social · 12d

Do you know any medical students who might like to win £250 by writing a 500 word essay about #ME ?

I can provide lots of info to help any interested student and access to high quality resources and lived experience.

Action for ME @actionforme.bsky.social · 12d

Our medical student essay competition is back!

We are hosting an essay competition open to all medical students at any Medical School in the UK.

Students who take part will have an improved understanding of ME and, we hope, be better able to diagnose and support people with ME.

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Action for ME @actionforme.bsky.social · 12d

Our medical student essay competition is back!

We are hosting an essay competition open to all medical students at any Medical School in the UK.

Students who take part will have an improved understanding of ME and, we hope, be better able to diagnose and support people with ME.

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ThereForME @thereforme.bsky.social · 12d

Today's guest blog is from Rosie Barrett, who writes about her sister Alice's experiences.

Rosie outlines the challenges people with v. severe ME face navigating sensory sensitivities, at home and in hospital - and the creativity & flexibility needed to provide safe care.

"Alice agreed to be hospitalised reluctantly. She knew she needed help but also knew how damaging a hospital environment would be for her symptoms". Rosie Barrett. New #ThereForME Substack post

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ThereForME @thereforme.bsky.social · 16d

🥼🙏?

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Greg Jenner @gregjenner.bsky.social · 22d

Got young kids who like learning stuff, but prefer to laugh while they do so? Boy do I have the book for you! 👇😉🦣

Greg Jenner @gregjenner.bsky.social · 24d

Thrilled to share a clip from our funny new children's audiobook about the Stone Age. I had such fun writing and narrating this with the brilliant archaeologist @brennawalks.bsky.social

In this clip, join Homo Erectus on a scavenging hunt... but they're in for a nasty, LOUD surprise! (Sound on!)

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Prof Christina Pagel @chrischirp.bsky.social · 23d

After a long pause, I've just done another England Covid & NHS update as we head into the autumn/winter season.

TLDR: we're in a significant Covid wave now, the NHS is stretched, get boosted if you're eligible.

christinapagel.substack.com/p/england-is...

England is now experiencing a significant Covid wave, after 10 months of relative quiet

The latest Covid situation in England and a look at where NHS services are as we head into winter

christinapagel.substack.com

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Greg Jenner @gregjenner.bsky.social · 22d

I had no idea it was so costly!

Jason Hazeley @jasonhazeley.bsky.social · 22d

It’s dispiriting that this is what getting a COVID vaccination now looks like to this chronic asthmatic.

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Action for ME @actionforme.bsky.social · 24d

Our first Big Survey in over 5 years launches next week! You can sign up in advance to receive the survey once it's live, head to our web page to find out more: www.actionforme.org.uk/research-cam...

📅Opens 10am, Monday 13th October - 27th January 2026

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Action for ME @actionforme.bsky.social · 25d

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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

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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Boo-trino Lab @putrinolab.bsky.social · Sep 24

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 🙏🏻

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ThereForME @thereforme.bsky.social · Sep 23

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

Commissioning an NHS service for very severe ME

Perspectives from carers and clinicians

www.thereforme.uk

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ThereForME @thereforme.bsky.social · Sep 23

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 👇

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”

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Didier @medidier.bsky.social · Sep 23

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...

Commissioning an NHS service for very severe ME

Perspectives from carers and clinicians

www.thereforme.uk

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Supporting Healthcare Heroes UK (SHH-UK) @shh-uk.bsky.social · Jun 4

#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...

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

shh-uk.org

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Action for ME @actionforme.bsky.social · Sep 9

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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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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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Nicky Proctor @nickyproctor.bsky.social · Sep 8

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.
💙

sarah boothby @swastrosarah.bsky.social · Sep 8

🧵 Savannah update - please share widely.
Formerly known as Gigi, Savannah (S) is in Room 4, Ward 1, Queen Elizabeth Hospital, Woolwich with very severe ME.
All her energy is being spent on calling for help.
There is a virtual MDT 10.30 tomorrow. S has asked that Dr Weir and I be invited to join
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youngEMERG @youngemerg.bsky.social · Sep 5

🌟 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

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Jack Stilgoe @jackstilgoe.bsky.social · Sep 4

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.

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.

www.bbc.co.uk

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Action for ME @actionforme.bsky.social · Sep 3

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 🙏

John Milne MP 🔸 @johnmilnehorsham.bsky.social · Sep 3

Today I've joined Action for ME in writing to @rthonwesstreeting.bsky.social on the chronic underfunding of ME/CFS research. Despite their prevalence, these conditions are still poorly understood and are without effective treatment.

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Nicky Proctor @nickyproctor.bsky.social · Sep 2

Hopefully APPG are aware of this.

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

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.

www.crowdjustice.com

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Chris Ponting @cgatist.bsky.social · Sep 1

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...

PRIME Project Manager

The PRIME project is looking for an experienced and dedicated project manager. This role will be crucial to the successful delivery of PRIME, with the post holder responsible for the strategic executi...

elxw.fa.em3.oraclecloud.com

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Action for ME @actionforme.bsky.social · Sep 2

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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

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