Nicky Proctor
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nickyproctor.bsky.social
Nicky Proctor
@nickyproctor.bsky.social
480 followers 790 following 53 posts
New here...

Writing up my PhD in coach learning and development.
Love learning, family, ancestry and tolerance.

Campaigning for better healthcare for ME
#Biggest Medical Scandal of 21st Century
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nickyproctor.bsky.social
Nicky Proctor @nickyproctor.bsky.social · Aug 26
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...
Can science crack the mystery of ME?
Podcast Episode · Science Weekly · 21/08/2025 · 19m
podcasts.apple.com
Reposted by Nicky Proctor
nikosuvisto.com
Hi! Our online art gallery, A Quiet Storm, will host an open call group exhibition on International ME/CFS Awareness Day, May 12, 2026.

The submissions will open on March 12th. Our website is currently updated to a dark theme. Full statement below!

1/9

#MECFS #pwME #OpenCall #OnlineExhibition
A text: ‘Open call!’ Below it a hand-written text reads ‘Myalgic Encephalomyelitis Kills’. A text: ‘An online Group Exhibition’.
February 12, 2026 at 12:17 PM
Reposted by Nicky Proctor
lucibee.bsky.social
About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS...

🧵 1/n
Email sent to NHS elearning enquiries on 12 January 2026. Subject - Request for information. Dear NHSE elearning hub, I am making a freedom of information request (FOIA 2000) for the following data. In 2024/5, the NHS England elfh e-learning hub introduced 3 new modules on ME/CFS: 1. An introduction to ME/CFS (May 2024). 2. ME/CFS: guidance for community-based healthcare practitioners (January 2025). 3. Managing Severe ME/CFS (September 2025). Please can you tell me how many people have completed each module to date (from date of introduction), and what the breakdown is for logins by NHS staff (nhs.uk), and those in government (gov.uk), academic (ac.uk), and social care sectors (if available). I am happy for your response to be sent to this email address. Many thanks for your help, Lucy B
February 9, 2026 at 3:57 PM
Reposted by Nicky Proctor
healthwatchyork.bsky.social
We want to hear from women with long term health conditions to understand what is working or not in diagnosis and treatment/care. Please share your experience through our anonymous survey: www.smartsurvey.co.uk/s/77KRR3/

Or you can email: [email protected] or call 01904 621133.
January 12, 2026 at 2:12 PM
Reposted by Nicky Proctor
longcovidkids.bsky.social
We’ve created At Our Pace to support young people with Long Covid and overlapping illnesses to share their lived experiences and to build a growing set of resources shaped by those voices.
Flexible, supportive, and youth-led.

#Blog:
www.longcovidkids.org/post/at-our-...

#AtOurPace
At Our Pace: A Blog Space for Young People Living with Long Covid
At Our Pace was created to offer young people living with Long Covid and overlapping illnesses a supportive space to reflect, share, and contribute in ways that work for them. Many young people need ...
www.longcovidkids.org
January 21, 2026 at 5:37 PM
Reposted by Nicky Proctor
longcovidsupport.bsky.social
Today we’re launching #ForThoseWhoCant, our new fundraising campaign.

It’s about making fundraising more accessible, with ideas and guidance for friends, family, and loved ones who want to support our work.

Email [email protected] or click here for more: www.longcovid.org/get-involved...
January 16, 2026 at 11:01 AM
Reposted by Nicky Proctor
actionforme.bsky.social
📢 Have your say in the conversation about the SEND reform!

Ahead of the publication of the Schools White Paper this year, the Dept for Education is hosting a series of SEND engagement events across the country.

These events are for parents & carers, alongside teachers & other education experts.
Graphic from Action for ME promoting the Department for Education's SEND engagement events. Text in top half: 'Have your say in the conversation about the SEND reform through a series of online and in-person events' Photo in bottom half of school children. Action for ME logo in top right corner.
January 6, 2026 at 10:27 AM
Reposted by Nicky Proctor
daltmann.bsky.social
Come and join us at Imperial College to work a project looking at mechanisms in Long Covid and ME/CFS
We're looking for:
A keen, experienced Research Nurse
A gifted molecular immunologist with a strong bioinformatics background
www.imperial.ac.uk/.../descript....
www.imperial.ac.uk/.../descript....
www.imperial.ac.uk
December 18, 2025 at 10:48 AM
Reposted by Nicky Proctor
valebodi.bsky.social
In her first article (part II will follow) Natalie Hilliard shares insights from physiotherapy that will be of particular use to therapists and counsellors. This includes an understanding of post-exertional malaise, the challenges of trying to pace properly, and the impact of
Natalie Hilliard Physiotherapist (Part 1) - Chronic Living Therapy
Natalie Hilliard shares insights from physiotherapy, of particular use to therapists and counsellors. Eg understanding post-exertional malaise, challenges pacing properly, impact of emotional exertion...
chroniclivingtherapy.com
December 29, 2025 at 12:37 PM
Reposted by Nicky Proctor
tomkindlon.bsky.social
LOCOME Research Project webinar on 5th December - a recording is now available

www.youtube.com/watch?v=ITZ3...

Screenshot from latest Science for ME weekly update

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
LOCOME Research Project webinar on 5th December - a recording is now available. "Using DecodeME and other datasets, LOCOME has identified a number of genetic signals and biological pathways that may be involved in ME. The webinar shared the project findings and discussed the next steps."
December 22, 2025 at 1:35 AM
Reposted by Nicky Proctor
tomkindlon.bsky.social
9-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves.

Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol

tandfonline.com/doi/full/10....

#MEcfs #CFS
Screenshot of abstract
December 14, 2025 at 1:54 PM
Reposted by Nicky Proctor
actionforme.bsky.social
⏰ 24 hours left! Together, you’ve helped raise over £135,000 to improve the lives of people with ME and accelerate vital research.

Although our match funds have now run out, every single donation still counts.

✨ Donate here: bit.ly/2025-big-give 

Thank you so much 🧡
December 8, 2025 at 11:50 AM
nickyproctor.bsky.social
@iansample.bsky.social @madifinlay.bsky.social
Follow up episode?
😊
This study builds on the DecodeME study that you covered in the summer on your Guardisn Science Weekly podcast

#ME #LongCovid
#LOCOME @actionforme.bsky.social
@decodemestudy.bsky.social
December 4, 2025 at 10:58 PM
Reposted by Nicky Proctor
actionforme.bsky.social
(1/4) 🧬 @precisionlife.bsky.social has released exciting results from the LOCOME project

Using DecodeME and other datasets, LOCOME has identified a number of genetic signals and biological pathways that may be involved in ME.
December 4, 2025 at 8:26 AM
Reposted by Nicky Proctor
thereforme.bsky.social
Our #ThereForME Advent Calendar wonderful people who have been #ThereForME starts tomorrow! To start us off, we'd like to share this reflection kindly written for us by Jenny Wilson, who many know as a fierce advocate for the community working closely with Dr Weir.
Advent Reflection for the ME Community Advent is a season of hope, peace, joy, and love - a time to prepare for the coming of the Saviour, Jesus Christ. Yet for those of us with ME, Advent and Christmas often bring other emotions too: sorrow, isolation, and the sharp reminder of all we cannot do. While others gather to celebrate, many of us remain in darkened rooms, unable to tolerate light, noise, or company. It is then that the loneliness of illness feels most acute and can feel overwhelming. And yet, Advent is precisely about light shining in darkness, and hope being born when all seems lost. (cont'd) As a fifty-year veteran of ME, I have witnessed two parallel stories unfold. One is the steady progress of science, gradually uncovering some of the biological roots of this devastating disease during the last quarter of the 20th century. The other is a darker story - of denial, distortion, and stigma, as powerful voices from 1988 onwards sought to redefine ME as merely psychological, and bury the research and knowledge gained. This falsehood caused profound harm: patients were abandoned, disbelieved, and sometimes destroyed by the very systems meant to protect them, while parents endured false accusations of FII. (cont'd) But now, the truth is coming to the fore again, and the knowledge, long buried, is being regained. A new generation of scientists is rediscovering the evidence; silenced voices are being heard. For the first time, there is genuine, evidence-based hope - of biomarkers, of understanding, of treatments to come. Though some still cling to the old dogma, the medical darkness is giving way to dawn. (cont'd) This Christmas, as we await the coming of Christ - the Light of the World - we also wait for the healing of truth and compassion. The hope of Advent is not naïve; it is forged in endurance and kept alive by faith. Let us hold fast to that hope - that soon, light will shine fully into this darkest of medical chapters, and no one with ME or Long Covid will be left unseen, unheard, or disbelieved again. With love to all in the community, Jenny
November 30, 2025 at 9:01 AM
Reposted by Nicky Proctor
actionforme.bsky.social
🎥 Watch today's Westminster Hall Debate live on Parliament TV

Tabled by Tessa Munt MP, today's debate will focus on government support for people with ME. We will be sharing an overview of the debate after.

⏰ 4:30pm today, Wednesday 19th November

👉 Watch here: www.parliamentlive.tv/Commons
November 19, 2025 at 11:10 AM
Reposted by Nicky Proctor
actionforme.bsky.social
🔍There's still time to take part in our Big Survey! 📊

This year we're aiming for our biggest response yet - so we'd love to hear from you if you've yet to take part. Your responses will shape our work going forwards, contribute to ME research and shine a light on the impact of ME on your life.
A girl lies on her bed smiling at her laptop. Text on the image reads: “Big Survey – take part! Did you know we have a young people’s survey too for those aged 17 and under? Take part in The Big Survey.”
November 13, 2025 at 9:37 AM
Reposted by Nicky Proctor
thereforme.bsky.social
🚨 NEXT WEDNESDAY 19 NOVEMBER

We’ve been made aware of an upcoming Westminster Hall debate, tabled by @tessamunt.bsky.social, focused on government support for people with ME.

If you have the energy - an email to your MP asking them to attend can go a long way 🙏

Template in next post👇
November 13, 2025 at 9:48 AM
nickyproctor.bsky.social
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.”
ninasteinkopf.bsky.social Nina Steinkopf @ninasteinkopf.bsky.social · Nov 2
More than 40 ME patients share their experience with the Lightning Process: lp-fortellinger.no/en/lp-stories/
November 2, 2025 at 10:54 AM
Reposted by Nicky Proctor
actionforme.bsky.social
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.” Graphic with a dark teal background and orange and white text. The headline reads: “Big Survey - take part!” Below, it says: “Help shape our work and provide insights into what life with ME is like.” A large orange button-style box reads: “Take part in The Big Survey.” At the bottom is a simple bar chart illustration and the Action for ME logo.
October 31, 2025 at 10:03 AM
nickyproctor.bsky.social
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.
actionforme.bsky.social Action for ME @actionforme.bsky.social · Oct 21
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.
Graphic promoting Action for ME’s medical student essay competition. Text details the impact of the essay competition and includes the essay title and deadline, which is noon Monday 3 November 2025. Action for ME logo in lower right corner with QR code that links to associated webpage beneath.
October 21, 2025 at 11:16 AM
Reposted by Nicky Proctor
actionforme.bsky.social
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.
Graphic promoting Action for ME’s medical student essay competition. Text details the impact of the essay competition and includes the essay title and deadline, which is noon Monday 3 November 2025. Action for ME logo in lower right corner with QR code that links to associated webpage beneath.
October 21, 2025 at 9:27 AM
Reposted by Nicky Proctor
thereforme.bsky.social
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
October 21, 2025 at 8:29 AM
Reposted by Nicky Proctor
thereforme.bsky.social
🥼🙏?
October 17, 2025 at 5:08 PM
Reposted by Nicky Proctor
gregjenner.bsky.social
Got young kids who like learning stuff, but prefer to laugh while they do so? Boy do I have the book for you! 👇😉🦣
gregjenner.bsky.social Greg Jenner (Historian) @gregjenner.bsky.social · Oct 9
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!)
October 11, 2025 at 12:54 PM
Reposted by Nicky Proctor
chrischirp.bsky.social
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
October 10, 2025 at 1:10 PM