Nicky Proctor
@nickyproctor.bsky.social
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
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
Pinned
Nicky Proctor
@nickyproctor.bsky.social
· Aug 26
Can science crack the mystery of ME?
Podcast Episode · Science Weekly · 21/08/2025 · 19m
podcasts.apple.com
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...
podcasts.apple.com/gb/podcast/s...
Reposted by Nicky Proctor
🔍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.
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.
November 13, 2025 at 9:37 AM
🔍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.
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.
Reposted by Nicky Proctor
🚨 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👇
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
🚨 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👇
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👇
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.”
“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.”
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
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.”
“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.”
Reposted by Nicky Proctor
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/
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/
October 31, 2025 at 10:03 AM
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/
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/
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.
I can provide lots of info to help any interested student and access to high quality resources and lived experience.
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.
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.
October 21, 2025 at 11:16 AM
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.
I can provide lots of info to help any interested student and access to high quality resources and lived experience.
Reposted by Nicky Proctor
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.
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.
October 21, 2025 at 9:27 AM
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.
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.
Reposted by Nicky Proctor
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.
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.
October 21, 2025 at 8:29 AM
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.
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.
Reposted by Nicky Proctor
Reposted by Nicky Proctor
Got young kids who like learning stuff, but prefer to laugh while they do so? Boy do I have the book for you! 👇😉🦣
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!)
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
Got young kids who like learning stuff, but prefer to laugh while they do so? Boy do I have the book for you! 👇😉🦣
Reposted by Nicky Proctor
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...
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
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...
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...
Reposted by Nicky Proctor
I had no idea it was so costly!
It’s dispiriting that this is what getting a COVID vaccination now looks like to this chronic asthmatic.
October 11, 2025 at 9:56 AM
I had no idea it was so costly!
Reposted by Nicky Proctor
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
📅Opens 10am, Monday 13th October - 27th January 2026
October 9, 2025 at 10:46 AM
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
📅Opens 10am, Monday 13th October - 27th January 2026
Reposted by Nicky Proctor
1/2
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
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
October 8, 2025 at 2:04 PM
Reposted by Nicky Proctor
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 🙏🏻
September 24, 2025 at 12:27 PM
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 🙏🏻
Reposted by Nicky Proctor
Reposted by Nicky Proctor
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 👇
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 👇
September 23, 2025 at 8:20 AM
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 👇
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 👇
Reposted by Nicky Proctor
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...
"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
September 23, 2025 at 9:17 AM
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...
"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...
Reposted by Nicky Proctor
#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...
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
June 4, 2025 at 6:15 PM
#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...
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...
Reposted by Nicky Proctor
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
⬇️
📢 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
⬇️
September 9, 2025 at 10:25 AM
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
⬇️
📢 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
⬇️
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.
💙
💙
🧵 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
1/2
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
1/2
September 8, 2025 at 6:16 PM
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.
💙
💙
Reposted by Nicky Proctor
🌟 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
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
September 5, 2025 at 7:26 AM
🌟 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
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
Reposted by Nicky Proctor
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
September 4, 2025 at 8:00 AM
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.
Reposted by Nicky Proctor
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 🙏
Thank you @johnmilnehorsham.bsky.social for leading on this call to the Secretary of State 🙏
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.
September 3, 2025 at 3:44 PM
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 🙏
Thank you @johnmilnehorsham.bsky.social for leading on this call to the Secretary of State 🙏
Reposted by Nicky Proctor
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...
"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
September 1, 2025 at 8:57 AM
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...
"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...