Ellie
@madknittrsteaparty.bsky.social
Love crafts, history, stories, natural world & spending time with husband, children, family & friends. When M.E /CFS & POTS doesn't stop me - which is most of the time right now. Usually found in a dressing gown. Devon, UK ♿🌿🏳️🌈🏳️⚧️🇺🇦
Pinned
Ellie
@madknittrsteaparty.bsky.social
· Jul 23
To my followers- I am sorry I can't donate to Gaza accounts at this time. I am disabled, unable to work, & spend much of my life in bed.
Please continue to follow me.
To UK government- we're watching a genocide in real time & you do nothing. This is unbearable. I'm ashamed of my government.
Please continue to follow me.
To UK government- we're watching a genocide in real time & you do nothing. This is unbearable. I'm ashamed of my government.
Reposted by Ellie
There's such a huge canyon between what I WANT to do and what I'm CAPABLE of doing.
Like most #pwME, so often I overestimate my capacity, push through & to try to jump the canyon, invariably landing at the bottom, predictably messy and very much crash damaged.
Who understands this scenario?
#pwLC
Like most #pwME, so often I overestimate my capacity, push through & to try to jump the canyon, invariably landing at the bottom, predictably messy and very much crash damaged.
Who understands this scenario?
#pwLC
December 6, 2025 at 12:11 PM
Reposted by Ellie
Truly profound respect for those within the medical system that manage to remain empathic - and follow their vocation - towards #pwME despite having everything in the system desincentivising them.
I have not crossed many of those humane souls myself, but when I did it felt miraculous.
I have not crossed many of those humane souls myself, but when I did it felt miraculous.
December 6, 2025 at 10:10 AM
Truly profound respect for those within the medical system that manage to remain empathic - and follow their vocation - towards #pwME despite having everything in the system desincentivising them.
I have not crossed many of those humane souls myself, but when I did it felt miraculous.
I have not crossed many of those humane souls myself, but when I did it felt miraculous.
Reposted by Ellie
Really pleased that our advent calendar gave us the opportunity to celebrate some of the amazing healthcare workers out there going above and beyond - including in the NHS.
Thanks for being #ThereForME Pauline!
Thanks for being #ThereForME Pauline!
December 6, 2025 at 9:18 AM
Really pleased that our advent calendar gave us the opportunity to celebrate some of the amazing healthcare workers out there going above and beyond - including in the NHS.
Thanks for being #ThereForME Pauline!
Thanks for being #ThereForME Pauline!
Reposted by Ellie
December 6, 2025 at 9:00 AM
Reposted by Ellie
3/3
Ein bewegender Film sagt mehr als
1000 Worte-
Mila Hermisson richtet an uns alle ein dringendes Anliegen:
Lernt über ME!
Ihre Stimme steht für so viele #MECFS #PEM Betroffene, die viel zu lange warten, dass wir als Gesellschaft endlich zuhören, verstehen und handeln!
#LearnAboutME
Ein bewegender Film sagt mehr als
1000 Worte-
Mila Hermisson richtet an uns alle ein dringendes Anliegen:
Lernt über ME!
Ihre Stimme steht für so viele #MECFS #PEM Betroffene, die viel zu lange warten, dass wir als Gesellschaft endlich zuhören, verstehen und handeln!
#LearnAboutME
December 3, 2025 at 10:00 PM
3/3
Ein bewegender Film sagt mehr als
1000 Worte-
Mila Hermisson richtet an uns alle ein dringendes Anliegen:
Lernt über ME!
Ihre Stimme steht für so viele #MECFS #PEM Betroffene, die viel zu lange warten, dass wir als Gesellschaft endlich zuhören, verstehen und handeln!
#LearnAboutME
Ein bewegender Film sagt mehr als
1000 Worte-
Mila Hermisson richtet an uns alle ein dringendes Anliegen:
Lernt über ME!
Ihre Stimme steht für so viele #MECFS #PEM Betroffene, die viel zu lange warten, dass wir als Gesellschaft endlich zuhören, verstehen und handeln!
#LearnAboutME
Reposted by Ellie
2/3
Ich sprach über #PEM,
über systemische Fehldiagnosen und belastende Fehlbehandlungen-
über Reha-
über kranke Kinder und die
existenzielle Not der
Schwerstbetroffenen -
bis hin zu assistiertem Suizid.
Und über ein System, das ernsthaft meint, #MECFS mit dem BPS-Modell
begegnen zu können.
Ich sprach über #PEM,
über systemische Fehldiagnosen und belastende Fehlbehandlungen-
über Reha-
über kranke Kinder und die
existenzielle Not der
Schwerstbetroffenen -
bis hin zu assistiertem Suizid.
Und über ein System, das ernsthaft meint, #MECFS mit dem BPS-Modell
begegnen zu können.
December 3, 2025 at 10:00 PM
Reposted by Ellie
1/3
#MECFS richtig einordnen -
„Abgrenzung zu psychischen
Erkrankungen und die Rolle der Psychotherapie".
Gestern durfte ich für die
@mecfs.at und die Plattform für Menschenrechte in Salzburg einen erfreulich gut besuchten Fachvortrag halten, moderiert von
@sabinehermisson.bsky.social
#MECFS richtig einordnen -
„Abgrenzung zu psychischen
Erkrankungen und die Rolle der Psychotherapie".
Gestern durfte ich für die
@mecfs.at und die Plattform für Menschenrechte in Salzburg einen erfreulich gut besuchten Fachvortrag halten, moderiert von
@sabinehermisson.bsky.social
December 3, 2025 at 10:00 PM
1/3
#MECFS richtig einordnen -
„Abgrenzung zu psychischen
Erkrankungen und die Rolle der Psychotherapie".
Gestern durfte ich für die
@mecfs.at und die Plattform für Menschenrechte in Salzburg einen erfreulich gut besuchten Fachvortrag halten, moderiert von
@sabinehermisson.bsky.social
#MECFS richtig einordnen -
„Abgrenzung zu psychischen
Erkrankungen und die Rolle der Psychotherapie".
Gestern durfte ich für die
@mecfs.at und die Plattform für Menschenrechte in Salzburg einen erfreulich gut besuchten Fachvortrag halten, moderiert von
@sabinehermisson.bsky.social
Gradually absorbing a trip to my nearest supermarket. When I 'only' had mild M.E I could walk there, with my twins in a double buggy, shop, & walk home. First time in a wheelchair: I can't reach most of the shelves; people can't see me; people cut in front of me; I can't use a trolley. 1/2
December 5, 2025 at 5:39 PM
Gradually absorbing a trip to my nearest supermarket. When I 'only' had mild M.E I could walk there, with my twins in a double buggy, shop, & walk home. First time in a wheelchair: I can't reach most of the shelves; people can't see me; people cut in front of me; I can't use a trolley. 1/2
Reposted by Ellie
And that's exactly why we created this card - just showing it to the person next to you then leaving means you don't disturb anyone, but there's someone who knows what's going on in case anyone asks or stresses. It's from www.stickmancommunications.co.uk/product-page...
Trying to pretend that -
Trying to pretend that -
Need to Leave card | Stickman Comms
This card says "I need to leave to manage a medical condition/disability. Don't worry, this is normal for me. I will return if and when I can." These 110x80 mm cards have rounded corners and a hole…
www.stickmancommunications.co.uk
December 5, 2025 at 5:09 PM
And that's exactly why we created this card - just showing it to the person next to you then leaving means you don't disturb anyone, but there's someone who knows what's going on in case anyone asks or stresses. It's from www.stickmancommunications.co.uk/product-page...
Trying to pretend that -
Trying to pretend that -
Reposted by Ellie
One particular challenge of managing non-visible symptoms - like pain, overwhelm, and fatigue, is how often we 'push through' and aggravate them because social norms say we can't behave in the way we actually need to. For example, I've just been chatting with someone who -
December 5, 2025 at 5:09 PM
One particular challenge of managing non-visible symptoms - like pain, overwhelm, and fatigue, is how often we 'push through' and aggravate them because social norms say we can't behave in the way we actually need to. For example, I've just been chatting with someone who -
Reposted by Ellie
Let's be clear about this: PEOPLE WILL DIE.
It will take years, though, as chronic HepB infection manifests its impact insidiously later in life. But people will die.
Unnecessarily, as this is a vaccine with a remarkably good safety profile.
JFC.
It will take years, though, as chronic HepB infection manifests its impact insidiously later in life. But people will die.
Unnecessarily, as this is a vaccine with a remarkably good safety profile.
JFC.
December 5, 2025 at 4:15 PM
Let's be clear about this: PEOPLE WILL DIE.
It will take years, though, as chronic HepB infection manifests its impact insidiously later in life. But people will die.
Unnecessarily, as this is a vaccine with a remarkably good safety profile.
JFC.
It will take years, though, as chronic HepB infection manifests its impact insidiously later in life. But people will die.
Unnecessarily, as this is a vaccine with a remarkably good safety profile.
JFC.
Reposted by Ellie
BP to scrap paid rest breaks and most bank holiday bonuses for forecourt staff.
Changes to employee benefits would cut take-home pay by at least 6.25%.
Would exec pay and dividends be cut? No chance.
Hard-won rights eroded as corporations rule without ever being elected.
Back to Victorian times.
Changes to employee benefits would cut take-home pay by at least 6.25%.
Would exec pay and dividends be cut? No chance.
Hard-won rights eroded as corporations rule without ever being elected.
Back to Victorian times.
BP to scrap paid rest breaks and most bank holiday bonuses for forecourt staff
Exclusive: Plans to offset increase in minimum ‘fair pay’ set by Living Wage Foundation will affect 5,400 employees
www.theguardian.com
December 5, 2025 at 5:23 PM
BP to scrap paid rest breaks and most bank holiday bonuses for forecourt staff.
Changes to employee benefits would cut take-home pay by at least 6.25%.
Would exec pay and dividends be cut? No chance.
Hard-won rights eroded as corporations rule without ever being elected.
Back to Victorian times.
Changes to employee benefits would cut take-home pay by at least 6.25%.
Would exec pay and dividends be cut? No chance.
Hard-won rights eroded as corporations rule without ever being elected.
Back to Victorian times.
Reposted by Ellie
Document from NHS England which basically says when there is another Pandemic we can’t be bothered to protect you, it’s too costly. We are on our own folks. H/T @catinthehat.bsky.social
December 5, 2025 at 12:54 AM
Document from NHS England which basically says when there is another Pandemic we can’t be bothered to protect you, it’s too costly. We are on our own folks. H/T @catinthehat.bsky.social
Reposted by Ellie
NHS heroes: you deserve better than this.
You keep us safe, you save lives, and you belong here.
You will *always* be loved, respected and appreciated in London.
You keep us safe, you save lives, and you belong here.
You will *always* be loved, respected and appreciated in London.
Rising racism blamed for collapse in number of foreign nurses coming to UK
Number of overseas nurses and midwives registered between April and September was half that of a year ago
www.theguardian.com
December 5, 2025 at 10:35 AM
NHS heroes: you deserve better than this.
You keep us safe, you save lives, and you belong here.
You will *always* be loved, respected and appreciated in London.
You keep us safe, you save lives, and you belong here.
You will *always* be loved, respected and appreciated in London.
Reposted by Ellie
✨😯 The wondrous Romanesque crypt at St. Mary, Lastingham, Yorkshire - a space where ancient crosses and carvings seem to emerge from the surface - reminding us of its rooted history.
December 5, 2025 at 7:03 AM
✨😯 The wondrous Romanesque crypt at St. Mary, Lastingham, Yorkshire - a space where ancient crosses and carvings seem to emerge from the surface - reminding us of its rooted history.
Reposted by Ellie
Well done! A Massachusetts church displayed an “ICE was here” sign in its Nativity scene.
December 4, 2025 at 8:23 PM
Well done! A Massachusetts church displayed an “ICE was here” sign in its Nativity scene.
Reposted by Ellie
Aujourd’hui, nous souhaitons remercier du fond du cœur nos 𝟲𝟮𝟯 𝗺𝗲𝗺𝗯𝗿𝗲𝘀 ❤️ Parmi eux, une 30aine 𝗱𝗲 𝗺𝗲𝗺𝗯𝗿𝗲𝘀 𝗮𝗰𝘁𝗶𝗳𝘀 s’investissent tout au long de l’année, aux côtés de nombreuses personnes qui apportent une aide ponctuelle. Chaque geste compte.
December 5, 2025 at 8:52 AM
Aujourd’hui, nous souhaitons remercier du fond du cœur nos 𝟲𝟮𝟯 𝗺𝗲𝗺𝗯𝗿𝗲𝘀 ❤️ Parmi eux, une 30aine 𝗱𝗲 𝗺𝗲𝗺𝗯𝗿𝗲𝘀 𝗮𝗰𝘁𝗶𝗳𝘀 s’investissent tout au long de l’année, aux côtés de nombreuses personnes qui apportent une aide ponctuelle. Chaque geste compte.
Reposted by Ellie
📢 Clinically Vulnerable Families is delighted to announce that
"See a mask, wear a mask"
is the new protocol to support Clinically Vulnerable voters, following our advocacy efforts.
Amazing work by the @electoralcommission.org.uk !
"See a mask, wear a mask"
is the new protocol to support Clinically Vulnerable voters, following our advocacy efforts.
Amazing work by the @electoralcommission.org.uk !
December 4, 2025 at 12:06 PM
📢 Clinically Vulnerable Families is delighted to announce that
"See a mask, wear a mask"
is the new protocol to support Clinically Vulnerable voters, following our advocacy efforts.
Amazing work by the @electoralcommission.org.uk !
"See a mask, wear a mask"
is the new protocol to support Clinically Vulnerable voters, following our advocacy efforts.
Amazing work by the @electoralcommission.org.uk !
Reposted by Ellie
✨My Art Shop is now open. Small batches, limited numbers — once a piece goes, that’s usually it. If something catches your eye, now’s a good time to browse. Dispatching to the UK next week. Every purchase helps support a working creative on his travels. 🚐 📸 🏛️ ✍️ 🎨
digest.andymarshall.co/tag/shop/
digest.andymarshall.co/tag/shop/
Atelier - Andy Marshall's Genius Loci Digest
Welcome to my art shop. Each sketch captures the spirit of historic buildings and the connection we feel to unique places. These artworks reflect my journey across the British Isles, exploring archite...
digest.andymarshall.co
December 2, 2025 at 5:35 PM
✨My Art Shop is now open. Small batches, limited numbers — once a piece goes, that’s usually it. If something catches your eye, now’s a good time to browse. Dispatching to the UK next week. Every purchase helps support a working creative on his travels. 🚐 📸 🏛️ ✍️ 🎨
digest.andymarshall.co/tag/shop/
digest.andymarshall.co/tag/shop/
Reposted by Ellie
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 Ellie
Next week’s APPG meeting will involve MPs coming together to discuss how they can work together to promote these two issues.
The more MPs attending the better, so (if you have the energy) emails to your MPs are always helpful to encourage them to attend👇
The more MPs attending the better, so (if you have the energy) emails to your MPs are always helpful to encourage them to attend👇
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 5, 2025 at 9:33 AM
Next week’s APPG meeting will involve MPs coming together to discuss how they can work together to promote these two issues.
The more MPs attending the better, so (if you have the energy) emails to your MPs are always helpful to encourage them to attend👇
The more MPs attending the better, so (if you have the energy) emails to your MPs are always helpful to encourage them to attend👇
Reposted by Ellie
December 5th. Thank you for being #ThereForME, Tony White!
Nominated by Tracey @traceydooley.bsky.social. ✨
Nominated by Tracey @traceydooley.bsky.social. ✨
December 5, 2025 at 9:01 AM
December 5th. Thank you for being #ThereForME, Tony White!
Nominated by Tracey @traceydooley.bsky.social. ✨
Nominated by Tracey @traceydooley.bsky.social. ✨
Reposted by Ellie
Hello folks. I've been making plaster of paris artefacts/decorations for friends.
I'm opening it up here now - all items incl. postage (UK only, sadly) & gift packaging. I can send things within a week, usually faster.
Anyway, if there's anything you fancy, message/email me! 😊
#Archaeology 🏺
I'm opening it up here now - all items incl. postage (UK only, sadly) & gift packaging. I can send things within a week, usually faster.
Anyway, if there's anything you fancy, message/email me! 😊
#Archaeology 🏺
November 10, 2025 at 1:42 PM
Hello folks. I've been making plaster of paris artefacts/decorations for friends.
I'm opening it up here now - all items incl. postage (UK only, sadly) & gift packaging. I can send things within a week, usually faster.
Anyway, if there's anything you fancy, message/email me! 😊
#Archaeology 🏺
I'm opening it up here now - all items incl. postage (UK only, sadly) & gift packaging. I can send things within a week, usually faster.
Anyway, if there's anything you fancy, message/email me! 😊
#Archaeology 🏺
Reposted by Ellie
👇🏽 Exciting news! But I know that whilst important, it’s an early step, with a long road ahead. Interested to understand what needs to happen next and how U.K. government could help… so that eventually we have treatments and diagnostics for the too many #pwME.
Webinar tomorrow: tinyurl.com/58j9vx8p
Webinar tomorrow: tinyurl.com/58j9vx8p
(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.
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 8:48 AM
👇🏽 Exciting news! But I know that whilst important, it’s an early step, with a long road ahead. Interested to understand what needs to happen next and how U.K. government could help… so that eventually we have treatments and diagnostics for the too many #pwME.
Webinar tomorrow: tinyurl.com/58j9vx8p
Webinar tomorrow: tinyurl.com/58j9vx8p
Reposted by Ellie
