@andyburnham.bsky.social
@yvettecooper-mp.bsky.social
@zackpolanski.bsky.social
@eddavey.libdems.org.uk
People with #SevereME are BEGGING you to act!
PLEASE read Savannah’s update & look at the picture at the end
This is a horrific violation of human rights
#GreatestMEdicalScandal
#JusticeForME
@yvettecooper-mp.bsky.social
@zackpolanski.bsky.social
@eddavey.libdems.org.uk
People with #SevereME are BEGGING you to act!
PLEASE read Savannah’s update & look at the picture at the end
This is a horrific violation of human rights
#GreatestMEdicalScandal
#JusticeForME
There is a worrying update on Savannah's situation in hospital here. I hope the ME orgs see the call to action and can help in some way.
@actionforme.bsky.social #MEcfs #SevereME
www.gofundme.com/f/severemerg...
@actionforme.bsky.social #MEcfs #SevereME
www.gofundme.com/f/severemerg...
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
November 4, 2026 at 10:20 PM
@andyburnham.bsky.social
@yvettecooper-mp.bsky.social
@zackpolanski.bsky.social
@eddavey.libdems.org.uk
People with #SevereME are BEGGING you to act!
PLEASE read Savannah’s update & look at the picture at the end
This is a horrific violation of human rights
#GreatestMEdicalScandal
#JusticeForME
@yvettecooper-mp.bsky.social
@zackpolanski.bsky.social
@eddavey.libdems.org.uk
People with #SevereME are BEGGING you to act!
PLEASE read Savannah’s update & look at the picture at the end
This is a horrific violation of human rights
#GreatestMEdicalScandal
#JusticeForME
There is a worrying update on Savannah's situation in hospital here. I hope the ME orgs see the call to action and can help in some way.
@actionforme.bsky.social #MEcfs #SevereME
www.gofundme.com/f/severemerg...
@actionforme.bsky.social #MEcfs #SevereME
www.gofundme.com/f/severemerg...
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
www.gofundme.com
November 4, 2026 at 9:11 AM
There is a worrying update on Savannah's situation in hospital here. I hope the ME orgs see the call to action and can help in some way.
@actionforme.bsky.social #MEcfs #SevereME
www.gofundme.com/f/severemerg...
@actionforme.bsky.social #MEcfs #SevereME
www.gofundme.com/f/severemerg...
relatable
when my elderly mum became disabled TheSystem™ kicked in: proactively offered guidance, ensured she got the various mobility aids needed, all free of charge via public health system
but TheSystem™ is plagued by ageism & ableism: I'm "too young" to qualify & #SevereME "isn't a disability" 🙄
when my elderly mum became disabled TheSystem™ kicked in: proactively offered guidance, ensured she got the various mobility aids needed, all free of charge via public health system
but TheSystem™ is plagued by ageism & ableism: I'm "too young" to qualify & #SevereME "isn't a disability" 🙄
November 4, 2026 at 2:25 AM
relatable
when my elderly mum became disabled TheSystem™ kicked in: proactively offered guidance, ensured she got the various mobility aids needed, all free of charge via public health system
but TheSystem™ is plagued by ageism & ableism: I'm "too young" to qualify & #SevereME "isn't a disability" 🙄
when my elderly mum became disabled TheSystem™ kicked in: proactively offered guidance, ensured she got the various mobility aids needed, all free of charge via public health system
but TheSystem™ is plagued by ageism & ableism: I'm "too young" to qualify & #SevereME "isn't a disability" 🙄
I don’t think ppl understand what this is like. I love my solitude, but I cannot take much more of this extreme isolation & inaccessibility of nature / being outside, truly.
I feel like I’m developing Zoochosis 💔
(This is a desperate cry for help)
#disabilityjustice #severeme #pwme #homeless
#SOS
I feel like I’m developing Zoochosis 💔
(This is a desperate cry for help)
#disabilityjustice #severeme #pwme #homeless
#SOS
November 1, 2026 at 10:26 AM
I don’t think ppl understand what this is like. I love my solitude, but I cannot take much more of this extreme isolation & inaccessibility of nature / being outside, truly.
I feel like I’m developing Zoochosis 💔
(This is a desperate cry for help)
#disabilityjustice #severeme #pwme #homeless
#SOS
I feel like I’m developing Zoochosis 💔
(This is a desperate cry for help)
#disabilityjustice #severeme #pwme #homeless
#SOS
Yes we need investment in research.
Yes we need commissioned care.
But those things will take YEARS to have a real effect meaning many more people with #SevereME will be made more sick when they cannot avoid hospital.
Please demand a way to prevent the NHS from harming us like this while we wait.
Yes we need commissioned care.
But those things will take YEARS to have a real effect meaning many more people with #SevereME will be made more sick when they cannot avoid hospital.
Please demand a way to prevent the NHS from harming us like this while we wait.
November 4, 2026 at 3:19 PM
Yes we need investment in research.
Yes we need commissioned care.
But those things will take YEARS to have a real effect meaning many more people with #SevereME will be made more sick when they cannot avoid hospital.
Please demand a way to prevent the NHS from harming us like this while we wait.
Yes we need commissioned care.
But those things will take YEARS to have a real effect meaning many more people with #SevereME will be made more sick when they cannot avoid hospital.
Please demand a way to prevent the NHS from harming us like this while we wait.
More than 350 sportspeople sign Beth Dobbins letter to the Prime Minister calling for ME/CFS research funding
Read more: https://meassociation.org.uk/nsye
#MECFS #pwME #MyalgicE #SevereME
Read more: https://meassociation.org.uk/nsye
#MECFS #pwME #MyalgicE #SevereME
More than 350 sportspeople sign Beth Dobbins letter to the Prime Minister calling for ME/CFS research funding - The ME Association
Read Beth Dobbin's letter to the prime minister, signed by over 350 sportspeople, calling for greater research funding for ME/CFS
meassociation.org.uk
November 2, 2026 at 3:08 PM
More than 350 sportspeople sign Beth Dobbins letter to the Prime Minister calling for ME/CFS research funding
Read more: https://meassociation.org.uk/nsye
#MECFS #pwME #MyalgicE #SevereME
Read more: https://meassociation.org.uk/nsye
#MECFS #pwME #MyalgicE #SevereME
One month to my birthday. How do I make it less crappy?
It’s just a reminder that I’ve been trapped inside, missing out on life, for another whole year.
Can’t really go do anything fun, I’ll need to stay home lying down.
I’d like to look forward to *something* 🤷♀️
#SevereME #pwME
It’s just a reminder that I’ve been trapped inside, missing out on life, for another whole year.
Can’t really go do anything fun, I’ll need to stay home lying down.
I’d like to look forward to *something* 🤷♀️
#SevereME #pwME
October 30, 2026 at 9:32 AM
Interesting. I’ve been getting between 1-4 hrs of sleep since Jul due to stress of ongoing homelessness & neighbors in this motel being so effing loud between midnight & 6am that I haven’t fallen asleep before 7am for WEEKS. I’m even more exhausted than usual (I have #severeME) & gen about to crack💔
November 1, 2026 at 11:53 AM
Interesting. I’ve been getting between 1-4 hrs of sleep since Jul due to stress of ongoing homelessness & neighbors in this motel being so effing loud between midnight & 6am that I haven’t fallen asleep before 7am for WEEKS. I’m even more exhausted than usual (I have #severeME) & gen about to crack💔
Mine’s in Jan & was always a horrible time. I haven’t been able to celebrate any holidays the past 2 yrs bc I’ve been homeless & living in a tiny motel room w/ my disabled cat while having #severeME & other excruciating disabilities… will be the 3rd yr of 0 celebrations if I can’t get out of here 💔
November 1, 2026 at 11:18 AM
Mine’s in Jan & was always a horrible time. I haven’t been able to celebrate any holidays the past 2 yrs bc I’ve been homeless & living in a tiny motel room w/ my disabled cat while having #severeME & other excruciating disabilities… will be the 3rd yr of 0 celebrations if I can’t get out of here 💔
Awareness doesn't end when the pyjamas come off.
Thank you to everyone who supported BED for Severe M.E. this year. Together we've helped make the lives of people with severe M.E. more visible, and that matters.
#BedForSevereME #PwME #SevereME
Thank you to everyone who supported BED for Severe M.E. this year. Together we've helped make the lives of people with severe M.E. more visible, and that matters.
#BedForSevereME #PwME #SevereME
October 30, 2026 at 9:02 AM
Awareness doesn't end when the pyjamas come off.
Thank you to everyone who supported BED for Severe M.E. this year. Together we've helped make the lives of people with severe M.E. more visible, and that matters.
#BedForSevereME #PwME #SevereME
Thank you to everyone who supported BED for Severe M.E. this year. Together we've helped make the lives of people with severe M.E. more visible, and that matters.
#BedForSevereME #PwME #SevereME
Thank you for the thread (& amazing Picard / Riker art! 🖖)
V: venmo.com/u/Donia-Lilly
PP: paypal.me/donialilly
Art: DoniaLilly.com
#MutualAid #chronicillness #severeme #helpsky #DisabilitySupportMA #pwME #emergencymutualaid #EmergencyMA #HELP
#MAboost #helpfolkslive
#LGBTQIA+ArtistsMA #MEawareness
V: venmo.com/u/Donia-Lilly
PP: paypal.me/donialilly
Art: DoniaLilly.com
#MutualAid #chronicillness #severeme #helpsky #DisabilitySupportMA #pwME #emergencymutualaid #EmergencyMA #HELP
#MAboost #helpfolkslive
#LGBTQIA+ArtistsMA #MEawareness
November 3, 2026 at 1:00 AM
Thank you for the thread (& amazing Picard / Riker art! 🖖)
V: venmo.com/u/Donia-Lilly
PP: paypal.me/donialilly
Art: DoniaLilly.com
#MutualAid #chronicillness #severeme #helpsky #DisabilitySupportMA #pwME #emergencymutualaid #EmergencyMA #HELP
#MAboost #helpfolkslive
#LGBTQIA+ArtistsMA #MEawareness
V: venmo.com/u/Donia-Lilly
PP: paypal.me/donialilly
Art: DoniaLilly.com
#MutualAid #chronicillness #severeme #helpsky #DisabilitySupportMA #pwME #emergencymutualaid #EmergencyMA #HELP
#MAboost #helpfolkslive
#LGBTQIA+ArtistsMA #MEawareness
Today is BED for Severe M.E. Day! 🎉
For one day, pyjamas become a symbol of solidarity with people whose lives are spent largely in bed due to severe M.E.
Put on your PJs, take a photo, and help us make severe M.E. impossible to ignore.
#BedForSevereME #SevereME
For one day, pyjamas become a symbol of solidarity with people whose lives are spent largely in bed due to severe M.E.
Put on your PJs, take a photo, and help us make severe M.E. impossible to ignore.
#BedForSevereME #SevereME
October 29, 2026 at 8:30 AM
Today is BED for Severe M.E. Day! 🎉
For one day, pyjamas become a symbol of solidarity with people whose lives are spent largely in bed due to severe M.E.
Put on your PJs, take a photo, and help us make severe M.E. impossible to ignore.
#BedForSevereME #SevereME
For one day, pyjamas become a symbol of solidarity with people whose lives are spent largely in bed due to severe M.E.
Put on your PJs, take a photo, and help us make severe M.E. impossible to ignore.
#BedForSevereME #SevereME
What if getting dressed, sitting up, or having a conversation could leave you seriously ill for days or weeks?
That's the reality for many people living with #SevereME.
This Thursday, wear your PJs, start a conversation, and help raise awareness and funds.
#BedForSevereME #PwME
That's the reality for many people living with #SevereME.
This Thursday, wear your PJs, start a conversation, and help raise awareness and funds.
#BedForSevereME #PwME
October 27, 2026 at 4:31 PM
What if getting dressed, sitting up, or having a conversation could leave you seriously ill for days or weeks?
That's the reality for many people living with #SevereME.
This Thursday, wear your PJs, start a conversation, and help raise awareness and funds.
#BedForSevereME #PwME
That's the reality for many people living with #SevereME.
This Thursday, wear your PJs, start a conversation, and help raise awareness and funds.
#BedForSevereME #PwME
@alemmatthees.bsky.social I also have #severeME. Suggest you check out the workrave app. It's been a gamechanger for me for pacing cognitive activity on my laptop
Full explaination: www.reddit.com/r/cfs/commen...
Full explaination: www.reddit.com/r/cfs/commen...
From the cfs community on Reddit
Explore this post and more from the cfs community
www.reddit.com
October 30, 2026 at 7:38 PM
@alemmatthees.bsky.social I also have #severeME. Suggest you check out the workrave app. It's been a gamechanger for me for pacing cognitive activity on my laptop
Full explaination: www.reddit.com/r/cfs/commen...
Full explaination: www.reddit.com/r/cfs/commen...
Many people with #SevereME spend most of their lives confined to bed, unable to work, socialise, study, or even tolerate light and sound. On Thursday, we're asking you to wear your PJs and help make their reality visible.
See all BED for Severe M.E info on our website.
#BedForSevereME #Fundraising
See all BED for Severe M.E info on our website.
#BedForSevereME #Fundraising
October 26, 2026 at 6:15 PM
Many people with #SevereME spend most of their lives confined to bed, unable to work, socialise, study, or even tolerate light and sound. On Thursday, we're asking you to wear your PJs and help make their reality visible.
See all BED for Severe M.E info on our website.
#BedForSevereME #Fundraising
See all BED for Severe M.E info on our website.
#BedForSevereME #Fundraising
October 24, 2026 at 12:56 PM
Very Severe ME/CFS : FOR UK ME Charities to Provide Individual Advocacy and Legal Support - Sign the Petition! c.org/SRLc4cfjZV #MECFS #MyalgicE #SevereME
Sign the Petition
Very Severe ME/CFS : FOR UK ME Charities to Provide Individual Advocacy and Legal Support
c.org
October 26, 2026 at 11:23 AM
Very Severe ME/CFS : FOR UK ME Charities to Provide Individual Advocacy and Legal Support - Sign the Petition! c.org/SRLc4cfjZV #MECFS #MyalgicE #SevereME
One month to my birthday. How do I make it less crappy?
It’s just a reminder that I’ve been trapped inside, missing out on life, for another whole year.
Can’t really go do anything fun, I’ll need to stay home lying down.
I’d like to look forward to *something* 🤷♀️
#SevereME #pwME
It’s just a reminder that I’ve been trapped inside, missing out on life, for another whole year.
Can’t really go do anything fun, I’ll need to stay home lying down.
I’d like to look forward to *something* 🤷♀️
#SevereME #pwME
October 30, 2026 at 9:32 AM
Why do ppl think they’re entitled to treat poor &/or homeless & disabled ppl this way⁉️
I truly hate it here. (Here being this country. Above exchange happened on Nextdoor, fwiw)
(other ways to help me & my cat) linktr.ee/ethyricalartist
#Disability #pwME #severeME #DisabilityJustice #homelessness
I truly hate it here. (Here being this country. Above exchange happened on Nextdoor, fwiw)
(other ways to help me & my cat) linktr.ee/ethyricalartist
#Disability #pwME #severeME #DisabilityJustice #homelessness
November 3, 2026 at 12:03 AM
Why do ppl think they’re entitled to treat poor &/or homeless & disabled ppl this way⁉️
I truly hate it here. (Here being this country. Above exchange happened on Nextdoor, fwiw)
(other ways to help me & my cat) linktr.ee/ethyricalartist
#Disability #pwME #severeME #DisabilityJustice #homelessness
I truly hate it here. (Here being this country. Above exchange happened on Nextdoor, fwiw)
(other ways to help me & my cat) linktr.ee/ethyricalartist
#Disability #pwME #severeME #DisabilityJustice #homelessness
The countdown is on! Join us on 29th October for #BedforSevereME. Every donation and share helps support people living with Severe M.E. 💙
All info can be found on our website.
#pwME #SevereME #MEcfs
All info can be found on our website.
#pwME #SevereME #MEcfs
October 25, 2026 at 8:15 PM
The countdown is on! Join us on 29th October for #BedforSevereME. Every donation and share helps support people living with Severe M.E. 💙
All info can be found on our website.
#pwME #SevereME #MEcfs
All info can be found on our website.
#pwME #SevereME #MEcfs
I had a first today. I’ve never had cut flowers from my own garden before!
With #SevereME life gets smaller and smaller. There are lots of things ending, but not many happy beginnings.
It’s the little things that make a day better :)
With #SevereME life gets smaller and smaller. There are lots of things ending, but not many happy beginnings.
It’s the little things that make a day better :)
October 28, 2026 at 8:14 AM
I had a first today. I’ve never had cut flowers from my own garden before!
With #SevereME life gets smaller and smaller. There are lots of things ending, but not many happy beginnings.
It’s the little things that make a day better :)
With #SevereME life gets smaller and smaller. There are lots of things ending, but not many happy beginnings.
It’s the little things that make a day better :)
Sicker. No heating-my abuser ripped out gas heating. No replacement.
Pain & difficult breathing under 17°C. Lung damage.
#Dysautonomia too.
Worse & worse here.
Don’t want to die.
Help me escape.
#SevereME #MutualAid #DisabilityMA 💕💸
chuffed.org/project/161937-help-anna-escape
Pain & difficult breathing under 17°C. Lung damage.
#Dysautonomia too.
Worse & worse here.
Don’t want to die.
Help me escape.
#SevereME #MutualAid #DisabilityMA 💕💸
chuffed.org/project/161937-help-anna-escape
### Urgent Appeal: Help Anna Escape Abuse – Time is Running Out!
🚨EMERGENCY: Anna's Life Hangs in the Balance – Act NOW to Rescue Her from Abuse and Neglect!
chuffed.org
October 26, 2026 at 11:13 AM
Sicker. No heating-my abuser ripped out gas heating. No replacement.
Pain & difficult breathing under 17°C. Lung damage.
#Dysautonomia too.
Worse & worse here.
Don’t want to die.
Help me escape.
#SevereME #MutualAid #DisabilityMA 💕💸
chuffed.org/project/161937-help-anna-escape
Pain & difficult breathing under 17°C. Lung damage.
#Dysautonomia too.
Worse & worse here.
Don’t want to die.
Help me escape.
#SevereME #MutualAid #DisabilityMA 💕💸
chuffed.org/project/161937-help-anna-escape
October 22, 2026 at 9:03 PM
Thank you, it’s been a really rough month, only $100 came in. I’m exhausted from asking & systems keep failing, preventing us from getting housing.
Need $526 by Wed for usurious increase on my storage unit.
V: venmo.com/u/Donia-Lilly
PP: paypal.me/donialilly
Art: DoniaLilly.com
#pwME #cat #HELP 🍁
Need $526 by Wed for usurious increase on my storage unit.
V: venmo.com/u/Donia-Lilly
PP: paypal.me/donialilly
Art: DoniaLilly.com
#pwME #cat #HELP 🍁
October 26, 2026 at 6:50 AM
Thank you, it’s been a really rough month, only $100 came in. I’m exhausted from asking & systems keep failing, preventing us from getting housing.
Need $526 by Wed for usurious increase on my storage unit.
V: venmo.com/u/Donia-Lilly
PP: paypal.me/donialilly
Art: DoniaLilly.com
#pwME #cat #HELP 🍁
Need $526 by Wed for usurious increase on my storage unit.
V: venmo.com/u/Donia-Lilly
PP: paypal.me/donialilly
Art: DoniaLilly.com
#pwME #cat #HELP 🍁
speaking of the interview series, just yesterday, I made this post to reach new people. if you know anyone with severe ME who wants to tell their story, you or they can hit me up on whatever social media works for you.
www.reddit.com/r/SevereME/s...
www.reddit.com/r/SevereME/s...
From the SevereME community on Reddit
Explore this post and more from the SevereME community
www.reddit.com
October 22, 2026 at 6:14 PM
speaking of the interview series, just yesterday, I made this post to reach new people. if you know anyone with severe ME who wants to tell their story, you or they can hit me up on whatever social media works for you.
www.reddit.com/r/SevereME/s...
www.reddit.com/r/SevereME/s...