Lizzy
@hopefullizzy.bsky.social
30y/o creative, with complex health issues🤞🏼ME/CFS biomedical research. Passion for the wild, for kindness, and helping all people have a voice✨ Bristol, UK
So 40-50 individuals have taken the module on managing SevereME.
This is heartbreaking. How on earth are things going to change? It should be mandatory.
Huge HUGE thank you to those people who HAVE engaged, you can make a difference.
This is heartbreaking. How on earth are things going to change? It should be mandatory.
Huge HUGE thank you to those people who HAVE engaged, you can make a difference.
5/n
Today, I received their answer. This is the data table they sent me, of the number of people who have completed each of the 3 modules up to 20 January 2026:
Today, I received their answer. This is the data table they sent me, of the number of people who have completed each of the 3 modules up to 20 January 2026:
February 9, 2026 at 6:22 PM
So 40-50 individuals have taken the module on managing SevereME.
This is heartbreaking. How on earth are things going to change? It should be mandatory.
Huge HUGE thank you to those people who HAVE engaged, you can make a difference.
This is heartbreaking. How on earth are things going to change? It should be mandatory.
Huge HUGE thank you to those people who HAVE engaged, you can make a difference.
Reposted by Lizzy
Hundreds of thousands of #pwME & #LC have been forced to live at the very edge of their suffering, their pain & their courage because a few powerful people chose to abandon their professional responsibilities, their morals & their humanity.
#ME #BPSCabal #MedEd #MEAwareness
#ME #BPSCabal #MedEd #MEAwareness
February 9, 2026 at 10:17 AM
My consultants are talking with my MP today about #SevereME provision etc because many of our situations are so desperate, there is nothing on offer, no guidance for them, no treatments for us.
@wesstreeting It HAS to change.
Funding research, and funding a specialist service will save lives.
@wesstreeting It HAS to change.
Funding research, and funding a specialist service will save lives.
February 9, 2026 at 1:31 PM
My consultants are talking with my MP today about #SevereME provision etc because many of our situations are so desperate, there is nothing on offer, no guidance for them, no treatments for us.
@wesstreeting It HAS to change.
Funding research, and funding a specialist service will save lives.
@wesstreeting It HAS to change.
Funding research, and funding a specialist service will save lives.
Reposted by Lizzy
New Survey now out: experiences of people with ME and Long Covid with hyperbaric oxygen / oxygen therapy.
Please share widely.
For all the info and survey link, head on over to
www.physiosforme.com/o2survey
Please share widely.
For all the info and survey link, head on over to
www.physiosforme.com/o2survey
02 Chamber survey | Physiosforme
www.physiosforme.com
February 5, 2026 at 6:39 PM
New Survey now out: experiences of people with ME and Long Covid with hyperbaric oxygen / oxygen therapy.
Please share widely.
For all the info and survey link, head on over to
www.physiosforme.com/o2survey
Please share widely.
For all the info and survey link, head on over to
www.physiosforme.com/o2survey
Reposted by Lizzy
Thankyou to lizzy as whilst being poorly herself and in hospital long term … she is fighting the case for better care for people with ME. Thinking of you and hoping for improvement for you soon x
Ok so, update after an incredibly tough week (& months!) which I’m not ready to go into.
IV fluids have been reinstated.
My consultant(s) have been really good this week, particularly one, who came in from home during sudden personal leave to see me with mum, with another consultant.
IV fluids have been reinstated.
My consultant(s) have been really good this week, particularly one, who came in from home during sudden personal leave to see me with mum, with another consultant.
February 7, 2026 at 3:26 PM
Thankyou to lizzy as whilst being poorly herself and in hospital long term … she is fighting the case for better care for people with ME. Thinking of you and hoping for improvement for you soon x
Ok so, update after an incredibly tough week (& months!) which I’m not ready to go into.
IV fluids have been reinstated.
My consultant(s) have been really good this week, particularly one, who came in from home during sudden personal leave to see me with mum, with another consultant.
IV fluids have been reinstated.
My consultant(s) have been really good this week, particularly one, who came in from home during sudden personal leave to see me with mum, with another consultant.
February 7, 2026 at 2:53 PM
Ok so, update after an incredibly tough week (& months!) which I’m not ready to go into.
IV fluids have been reinstated.
My consultant(s) have been really good this week, particularly one, who came in from home during sudden personal leave to see me with mum, with another consultant.
IV fluids have been reinstated.
My consultant(s) have been really good this week, particularly one, who came in from home during sudden personal leave to see me with mum, with another consultant.
But I will never stop trying
January 31, 2026 at 1:18 PM
But I will never stop trying
Reposted by Lizzy
Way to go, Philadelphia! The city has introduced new legislation putting real limits on ICE activity. Federal agents will no longer be allowed to operate anonymously no masks, visible identification required, and arrests must be backed by warrants signed by a federal judge.
January 29, 2026 at 5:12 AM
Way to go, Philadelphia! The city has introduced new legislation putting real limits on ICE activity. Federal agents will no longer be allowed to operate anonymously no masks, visible identification required, and arrests must be backed by warrants signed by a federal judge.
Reposted by Lizzy
The word armadillo is borrowed from Spanish and simply means “little armored one.” But an even better word for an armadillo, in my opinion, is the Nahuatl ayotochtli. It means “turtle rabbit.”
January 29, 2026 at 12:03 PM
The word armadillo is borrowed from Spanish and simply means “little armored one.” But an even better word for an armadillo, in my opinion, is the Nahuatl ayotochtli. It means “turtle rabbit.”
Labour blocking Andy Burnham running for MP is one of the biggest mistakes they’ll make in terms of improvement in the country, and the chance at winning a future election.
Holding onto power while preventing change for good is not where it’s at.
Holding onto power while preventing change for good is not where it’s at.
January 27, 2026 at 9:41 AM
Labour blocking Andy Burnham running for MP is one of the biggest mistakes they’ll make in terms of improvement in the country, and the chance at winning a future election.
Holding onto power while preventing change for good is not where it’s at.
Holding onto power while preventing change for good is not where it’s at.
Reposted by Lizzy
The UK has lost its measles elimination status, the World Health Organization has announced.
Vaccine disinformation is a worldwide pandemic that is killing us.
Vaccine disinformation is a worldwide pandemic that is killing us.
UK loses measles elimination status
Decision made after outbreaks in 2024, when there were nearly 3,000 cases in England and Wales.
www.bbc.com
January 27, 2026 at 5:23 AM
The UK has lost its measles elimination status, the World Health Organization has announced.
Vaccine disinformation is a worldwide pandemic that is killing us.
Vaccine disinformation is a worldwide pandemic that is killing us.
Reposted by Lizzy
'Reframing Women Printmakers' a book with beautiful images, 20 artist interviews & a text that shares the neglected story of women's print art - pioneers, nature, city & protest! At any online or local bookshop e.g.
www.awesomebooks.com/book/9781913... ❣️
Waterstones, Amazon, Bookshop.Org 🧡💛🧡💛❤️
www.awesomebooks.com/book/9781913... ❣️
Waterstones, Amazon, Bookshop.Org 🧡💛🧡💛❤️
January 27, 2026 at 9:33 AM
'Reframing Women Printmakers' a book with beautiful images, 20 artist interviews & a text that shares the neglected story of women's print art - pioneers, nature, city & protest! At any online or local bookshop e.g.
www.awesomebooks.com/book/9781913... ❣️
Waterstones, Amazon, Bookshop.Org 🧡💛🧡💛❤️
www.awesomebooks.com/book/9781913... ❣️
Waterstones, Amazon, Bookshop.Org 🧡💛🧡💛❤️
When staff come in and ask how I am, they’re always surprised when I say wiped out, or exhausted… “oh no, why though?”😶🙄
Good job patient passports are read isn’t it? And my M.E diagnosis isn’t included in any handover sheets🙃 ignored.
It’s so disappointing and dangerous.
Healthcare has to change
Good job patient passports are read isn’t it? And my M.E diagnosis isn’t included in any handover sheets🙃 ignored.
It’s so disappointing and dangerous.
Healthcare has to change
January 27, 2026 at 9:35 AM
When staff come in and ask how I am, they’re always surprised when I say wiped out, or exhausted… “oh no, why though?”😶🙄
Good job patient passports are read isn’t it? And my M.E diagnosis isn’t included in any handover sheets🙃 ignored.
It’s so disappointing and dangerous.
Healthcare has to change
Good job patient passports are read isn’t it? And my M.E diagnosis isn’t included in any handover sheets🙃 ignored.
It’s so disappointing and dangerous.
Healthcare has to change
Reposted by Lizzy
I cried watching this shit and I'm not even in the UK but it's the same EVERYWHERE
Help us make hope normal again.
Join the Green Party now.
Join the Green Party now.
January 22, 2026 at 11:29 PM
I cried watching this shit and I'm not even in the UK but it's the same EVERYWHERE
Reposted by Lizzy
The post year has shown that shifting the government to provide a response proportionate to the needs of the 1.35m #pwME is a tough call, but I’m looking forward to working strategically with the group to bring the meaningful change that has been denied us all for too long.
January 21, 2026 at 10:30 PM
The post year has shown that shifting the government to provide a response proportionate to the needs of the 1.35m #pwME is a tough call, but I’m looking forward to working strategically with the group to bring the meaningful change that has been denied us all for too long.
@tessamunt.bsky.social is there a way I can message you on here?
January 22, 2026 at 5:10 PM
@tessamunt.bsky.social is there a way I can message you on here?
Reposted by Lizzy
Honoured to be elected as Chair of the APPG ME today. I’m grateful to have @JoPlatt.bsky.social continue to serve as an officer, facilitating continued coordination with the APPG Long COVID, and the support of @actionforme.bsky.social and @meassociation.org.uk through providing the Secretariat.
January 21, 2026 at 10:30 PM
Honoured to be elected as Chair of the APPG ME today. I’m grateful to have @JoPlatt.bsky.social continue to serve as an officer, facilitating continued coordination with the APPG Long COVID, and the support of @actionforme.bsky.social and @meassociation.org.uk through providing the Secretariat.
I saw the moon this morning. Have been in hospital 7weeks now almost. It’s tough.
I am forever amazed by my courage, my bravery, but it takes a lot.
47days since I breathed outside air from a window or door. 7weeks since I felt the cold on my face.
Thinking of you all. Keep going.
I am forever amazed by my courage, my bravery, but it takes a lot.
47days since I breathed outside air from a window or door. 7weeks since I felt the cold on my face.
Thinking of you all. Keep going.
January 10, 2026 at 9:04 AM
I saw the moon this morning. Have been in hospital 7weeks now almost. It’s tough.
I am forever amazed by my courage, my bravery, but it takes a lot.
47days since I breathed outside air from a window or door. 7weeks since I felt the cold on my face.
Thinking of you all. Keep going.
I am forever amazed by my courage, my bravery, but it takes a lot.
47days since I breathed outside air from a window or door. 7weeks since I felt the cold on my face.
Thinking of you all. Keep going.
So thankful for my lovely cards and post🌟🎄💛 3weeks now I’ve been here, feeling a little low. Exhausted.
December 16, 2025 at 9:22 AM
So thankful for my lovely cards and post🌟🎄💛 3weeks now I’ve been here, feeling a little low. Exhausted.
Reposted by Lizzy
While this is to be lauded, it always frustrates me that masking is *initiated* when levels are high. The best time to mask in hospitals is always; the second best time is when it is patently obvious that prevalence of flu / RSV / Covid is low but *increasing*.
www.derryjournal.com/health/face-...
www.derryjournal.com/health/face-...
Face masks return at hospitals and health hubs in Derry and the west amid flu and other viruses surge
The Western Trust has announced that all visitors, staff and patients are required to wear face masks at some hospital areas and other health care facilities for the first time since the pandemic, due...
www.derryjournal.com
December 15, 2025 at 8:19 PM
While this is to be lauded, it always frustrates me that masking is *initiated* when levels are high. The best time to mask in hospitals is always; the second best time is when it is patently obvious that prevalence of flu / RSV / Covid is low but *increasing*.
www.derryjournal.com/health/face-...
www.derryjournal.com/health/face-...
How is everyone doing? X
December 16, 2025 at 6:11 AM
How is everyone doing? X
The Drs are all enjoying my festive set up :,) 🎄✨
December 5, 2025 at 9:07 PM
The Drs are all enjoying my festive set up :,) 🎄✨
Reposted by Lizzy
Next Wednesday’s APPG ME meeting will focus on what members could do to promote two key issues:
1. Provision of specialist services for v severe ME
2. Better research funding.
Hoping that MPs will respond to constituents’ concerns and turn out as they did for the debate on ME. Nudges welcome 😉.
1. Provision of specialist services for v severe ME
2. Better research funding.
Hoping that MPs will respond to constituents’ concerns and turn out as they did for the debate on ME. Nudges welcome 😉.
December 4, 2025 at 10:45 PM
Next Wednesday’s APPG ME meeting will focus on what members could do to promote two key issues:
1. Provision of specialist services for v severe ME
2. Better research funding.
Hoping that MPs will respond to constituents’ concerns and turn out as they did for the debate on ME. Nudges welcome 😉.
1. Provision of specialist services for v severe ME
2. Better research funding.
Hoping that MPs will respond to constituents’ concerns and turn out as they did for the debate on ME. Nudges welcome 😉.
Reposted by Lizzy
The propaganda is so strong, it turns adults into fearful toddlers. "You can't make me!!!! 😭"
They're brainwashed.
Look, if the parent is wrong, you had to tolerate wearing a medical mask for a little while.
If you're wrong, their baby could suffer or even die.
And you want to gamble that??
They're brainwashed.
Look, if the parent is wrong, you had to tolerate wearing a medical mask for a little while.
If you're wrong, their baby could suffer or even die.
And you want to gamble that??
December 2, 2025 at 8:36 PM
The propaganda is so strong, it turns adults into fearful toddlers. "You can't make me!!!! 😭"
They're brainwashed.
Look, if the parent is wrong, you had to tolerate wearing a medical mask for a little while.
If you're wrong, their baby could suffer or even die.
And you want to gamble that??
They're brainwashed.
Look, if the parent is wrong, you had to tolerate wearing a medical mask for a little while.
If you're wrong, their baby could suffer or even die.
And you want to gamble that??
Reposted by Lizzy
Be kind to yourself, you’re doing your best and that’s enough
Image: www.instagram.com/dearbeautifu...
Image: www.instagram.com/dearbeautifu...
December 2, 2025 at 7:02 PM
Be kind to yourself, you’re doing your best and that’s enough
Image: www.instagram.com/dearbeautifu...
Image: www.instagram.com/dearbeautifu...