Si Craner
@cranervirus.bsky.social
Full time carer of child with severe Long Covid ME/CFS. Former school leader and financial analyst for national campaigning non profit
...And funding for treatments for LC & ME
Thank you for such a huge amount of work fighting for recognition of LC in kids
Now the CURRENT government needs to urgently wake up and take some action...
- TRAIN DOCTORS
- STOP CLOSING CLINICS
- FUND TREATMENTS RESEARCH
- CLEAN AIR
- EDUCATIONAL SUPPORT
Thank you for such a huge amount of work fighting for recognition of LC in kids
Now the CURRENT government needs to urgently wake up and take some action...
- TRAIN DOCTORS
- STOP CLOSING CLINICS
- FUND TREATMENTS RESEARCH
- CLEAN AIR
- EDUCATIONAL SUPPORT
November 21, 2025 at 11:33 AM
...And funding for treatments for LC & ME
Thank you for such a huge amount of work fighting for recognition of LC in kids
Now the CURRENT government needs to urgently wake up and take some action...
- TRAIN DOCTORS
- STOP CLOSING CLINICS
- FUND TREATMENTS RESEARCH
- CLEAN AIR
- EDUCATIONAL SUPPORT
Thank you for such a huge amount of work fighting for recognition of LC in kids
Now the CURRENT government needs to urgently wake up and take some action...
- TRAIN DOCTORS
- STOP CLOSING CLINICS
- FUND TREATMENTS RESEARCH
- CLEAN AIR
- EDUCATIONAL SUPPORT
Reposted by Si Craner
Voices of children with Long Covid..
"I can't climb the stairs"
"I've been sleeping in my kitchen"
"I haven't seen anyone my own age in person for 5 years"
"after school, I watch teenagers my own age pass by my window, talking and walking. I envy them"
youtu.be/Jwk8TS5S0TA?...
"I can't climb the stairs"
"I've been sleeping in my kitchen"
"I haven't seen anyone my own age in person for 5 years"
"after school, I watch teenagers my own age pass by my window, talking and walking. I envy them"
youtu.be/Jwk8TS5S0TA?...
Lives Interrupted: The Voices of Young People with Long Covid
YouTube video by Combination Dance
youtu.be
October 20, 2025 at 4:40 PM
Voices of children with Long Covid..
"I can't climb the stairs"
"I've been sleeping in my kitchen"
"I haven't seen anyone my own age in person for 5 years"
"after school, I watch teenagers my own age pass by my window, talking and walking. I envy them"
youtu.be/Jwk8TS5S0TA?...
"I can't climb the stairs"
"I've been sleeping in my kitchen"
"I haven't seen anyone my own age in person for 5 years"
"after school, I watch teenagers my own age pass by my window, talking and walking. I envy them"
youtu.be/Jwk8TS5S0TA?...
- Train Doctors
- Stop Closing Clinics
- Fund Treatments Research
- Clean Air
- Educational Support
#CovidInquiry #BorisVBoris #LongCovid #MEcfs #PhysicalNotMental #CovidDisables #PaediatricLongCovid
Nearly 15,000 signatures...
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
- Stop Closing Clinics
- Fund Treatments Research
- Clean Air
- Educational Support
#CovidInquiry #BorisVBoris #LongCovid #MEcfs #PhysicalNotMental #CovidDisables #PaediatricLongCovid
Nearly 15,000 signatures...
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
Invest in Long Covid & M.E. Research: Thousands of Children DISABLED, DISCHARGED, & HIDDEN FROM VIEW
• Five years after the start of the Covid pandemic, thousands remain severely ill - Many housebound or often bedbound, unable to attend school, work, or take part in daily life. Disabled, discha...
you.38degrees.org.uk
October 20, 2025 at 4:42 PM
- Train Doctors
- Stop Closing Clinics
- Fund Treatments Research
- Clean Air
- Educational Support
#CovidInquiry #BorisVBoris #LongCovid #MEcfs #PhysicalNotMental #CovidDisables #PaediatricLongCovid
Nearly 15,000 signatures...
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
- Stop Closing Clinics
- Fund Treatments Research
- Clean Air
- Educational Support
#CovidInquiry #BorisVBoris #LongCovid #MEcfs #PhysicalNotMental #CovidDisables #PaediatricLongCovid
Nearly 15,000 signatures...
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
Voices of children with Long Covid..
"I can't climb the stairs"
"I've been sleeping in my kitchen"
"I haven't seen anyone my own age in person for 5 years"
"after school, I watch teenagers my own age pass by my window, talking and walking. I envy them"
youtu.be/Jwk8TS5S0TA?...
"I can't climb the stairs"
"I've been sleeping in my kitchen"
"I haven't seen anyone my own age in person for 5 years"
"after school, I watch teenagers my own age pass by my window, talking and walking. I envy them"
youtu.be/Jwk8TS5S0TA?...
Lives Interrupted: The Voices of Young People with Long Covid
YouTube video by Combination Dance
youtu.be
October 20, 2025 at 4:40 PM
Voices of children with Long Covid..
"I can't climb the stairs"
"I've been sleeping in my kitchen"
"I haven't seen anyone my own age in person for 5 years"
"after school, I watch teenagers my own age pass by my window, talking and walking. I envy them"
youtu.be/Jwk8TS5S0TA?...
"I can't climb the stairs"
"I've been sleeping in my kitchen"
"I haven't seen anyone my own age in person for 5 years"
"after school, I watch teenagers my own age pass by my window, talking and walking. I envy them"
youtu.be/Jwk8TS5S0TA?...
LC and ME sufferers/carers writing to ICBs en masse?
@joplatt.bsky.social
@jodiegoslingmp.bsky.social
@nigelrothband.bsky.social, @karenlhargrave.bsky.social , @sammiemc.bsky.social , @longcovidsupport.bsky.social , @longcovidkids.bsky.social , @tessamunt.bsky.social , @binitakane.bsky.social
@joplatt.bsky.social
@jodiegoslingmp.bsky.social
@nigelrothband.bsky.social, @karenlhargrave.bsky.social , @sammiemc.bsky.social , @longcovidsupport.bsky.social , @longcovidkids.bsky.social , @tessamunt.bsky.social , @binitakane.bsky.social
September 30, 2025 at 9:05 AM
LC and ME sufferers/carers writing to ICBs en masse?
@joplatt.bsky.social
@jodiegoslingmp.bsky.social
@nigelrothband.bsky.social, @karenlhargrave.bsky.social , @sammiemc.bsky.social , @longcovidsupport.bsky.social , @longcovidkids.bsky.social , @tessamunt.bsky.social , @binitakane.bsky.social
@joplatt.bsky.social
@jodiegoslingmp.bsky.social
@nigelrothband.bsky.social, @karenlhargrave.bsky.social , @sammiemc.bsky.social , @longcovidsupport.bsky.social , @longcovidkids.bsky.social , @tessamunt.bsky.social , @binitakane.bsky.social
Not sure why the impact of Covid should be treated as a local issue but... It would be great to use the model APPG letter if it has been published somewhere. And I suggest encourage our long covid and ME networks to do the same.
September 30, 2025 at 8:59 AM
Not sure why the impact of Covid should be treated as a local issue but... It would be great to use the model APPG letter if it has been published somewhere. And I suggest encourage our long covid and ME networks to do the same.
One of the July actions for the secretariat was to draft letter for members of the public to write to local ICBs. Health Minister, Ashley Dalton recently replied to a letter we sent her about the lack of medical research and reducing long covid care available and she suggested we write to our ICB.
September 30, 2025 at 8:58 AM
One of the July actions for the secretariat was to draft letter for members of the public to write to local ICBs. Health Minister, Ashley Dalton recently replied to a letter we sent her about the lack of medical research and reducing long covid care available and she suggested we write to our ICB.
Thank you for your tireless advocacy🙏🙏Precious precious progress! 👏👏
...ALAS no funded govt action for our bedbound children & loved ones #FUNDtheplan
Staggering numbers affected. With half of LC sufferers progressing to ME
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
...ALAS no funded govt action for our bedbound children & loved ones #FUNDtheplan
Staggering numbers affected. With half of LC sufferers progressing to ME
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
Invest in Long Covid & M.E. Research: Thousands of Children DISABLED, DISCHARGED, & HIDDEN FROM VIEW
• Five years after the start of the Covid pandemic, thousands remain severely ill - Many housebound or often bedbound, unable to attend school, work, or take part in daily life. Disabled, discha...
you.38degrees.org.uk
July 22, 2025 at 12:46 PM
Thank you for your tireless advocacy🙏🙏Precious precious progress! 👏👏
...ALAS no funded govt action for our bedbound children & loved ones #FUNDtheplan
Staggering numbers affected. With half of LC sufferers progressing to ME
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
...ALAS no funded govt action for our bedbound children & loved ones #FUNDtheplan
Staggering numbers affected. With half of LC sufferers progressing to ME
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
We are all soooooooooooooooooooooo very very grateful to you @binitakane.bsky.social 👏🙏
July 22, 2025 at 12:41 PM
We are all soooooooooooooooooooooo very very grateful to you @binitakane.bsky.social 👏🙏
Thank you for your tireless advocacy!
👏👏 Precious progress!
...BUT no funded action for our bedbound children and loved ones
#FUNDtheplan #FUNDtheplan #FUNDtheplan
Half of long covid suffers progress to ME
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
👏👏 Precious progress!
...BUT no funded action for our bedbound children and loved ones
#FUNDtheplan #FUNDtheplan #FUNDtheplan
Half of long covid suffers progress to ME
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
you.38degrees.org.uk
July 22, 2025 at 12:27 PM
Thank you for your tireless advocacy!
👏👏 Precious progress!
...BUT no funded action for our bedbound children and loved ones
#FUNDtheplan #FUNDtheplan #FUNDtheplan
Half of long covid suffers progress to ME
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
👏👏 Precious progress!
...BUT no funded action for our bedbound children and loved ones
#FUNDtheplan #FUNDtheplan #FUNDtheplan
Half of long covid suffers progress to ME
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
Thank you for your tireless advocacy @karenlhargrave.bsky.social 👏👏 Precious progress!
...BUT no funded action for our bedbound children and loved ones
#FUNDtheplan #FUNDtheplan #FUNDtheplan
Half of long covid suffers progress to ME
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
...BUT no funded action for our bedbound children and loved ones
#FUNDtheplan #FUNDtheplan #FUNDtheplan
Half of long covid suffers progress to ME
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
Invest in Long Covid & M.E. Research: Thousands of Children DISABLED, DISCHARGED, & HIDDEN FROM VIEW
• Five years after the start of the Covid pandemic, thousands remain severely ill - Many housebound or often bedbound, unable to attend school, work, or take part in daily life. Disabled, discha...
you.38degrees.org.uk
July 22, 2025 at 12:11 PM
Thank you for your tireless advocacy @karenlhargrave.bsky.social 👏👏 Precious progress!
...BUT no funded action for our bedbound children and loved ones
#FUNDtheplan #FUNDtheplan #FUNDtheplan
Half of long covid suffers progress to ME
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
...BUT no funded action for our bedbound children and loved ones
#FUNDtheplan #FUNDtheplan #FUNDtheplan
Half of long covid suffers progress to ME
you.38degrees.org.uk/petitions/in...
@longcovidkids.bsky.social
Thank you. This is fantastic. There are extra barriers for children with severe LC/ME too. E.g. NHS Domilcillary services (like phlebotomy or opthalmology are very often only available to adults).
June 24, 2025 at 2:23 PM
Thank you. This is fantastic. There are extra barriers for children with severe LC/ME too. E.g. NHS Domilcillary services (like phlebotomy or opthalmology are very often only available to adults).
One of the many treatments she tried over the years worked. Does she indicate anywhere which treatment slowly seemed to help?
May 10, 2025 at 9:29 PM
One of the many treatments she tried over the years worked. Does she indicate anywhere which treatment slowly seemed to help?
Reposted by Si Craner
A govt response after almost 15,000 signed our petition/letter. Albeit a predictable one. Well done to all those that signed & spread the message. Hopefully today's Long Covid & M.E. Joint APPG meeting will pick this up & fight for services & treatments @joplatt.bsky.social @binitakane.bsky.social
May 7, 2025 at 7:29 AM
A govt response after almost 15,000 signed our petition/letter. Albeit a predictable one. Well done to all those that signed & spread the message. Hopefully today's Long Covid & M.E. Joint APPG meeting will pick this up & fight for services & treatments @joplatt.bsky.social @binitakane.bsky.social
Brushed under the carpet!
Five years after the start of the Covid pandemic, thousands remain severely ill - Many housebound or often bedbound, unable to attend school, work, or take part in daily life. Disabled, discharged, and hidden from view.
you.38degrees.org.uk/petitions/in...
Five years after the start of the Covid pandemic, thousands remain severely ill - Many housebound or often bedbound, unable to attend school, work, or take part in daily life. Disabled, discharged, and hidden from view.
you.38degrees.org.uk/petitions/in...
Invest in Long Covid & M.E. Research: Thousands of Children DISABLED, DISCHARGED, & HIDDEN FROM VIEW
• Five years after the start of the Covid pandemic, thousands remain severely ill - Many housebound or often bedbound, unable to attend school, work, or take part in daily life. Disabled, discha...
you.38degrees.org.uk
May 7, 2025 at 7:37 AM
Brushed under the carpet!
Five years after the start of the Covid pandemic, thousands remain severely ill - Many housebound or often bedbound, unable to attend school, work, or take part in daily life. Disabled, discharged, and hidden from view.
you.38degrees.org.uk/petitions/in...
Five years after the start of the Covid pandemic, thousands remain severely ill - Many housebound or often bedbound, unable to attend school, work, or take part in daily life. Disabled, discharged, and hidden from view.
you.38degrees.org.uk/petitions/in...
May 7, 2025 at 7:30 AM
A govt response after almost 15,000 signed our petition/letter. Albeit a predictable one. Well done to all those that signed & spread the message. Hopefully today's Long Covid & M.E. Joint APPG meeting will pick this up & fight for services & treatments @joplatt.bsky.social @binitakane.bsky.social
May 7, 2025 at 7:29 AM
A govt response after almost 15,000 signed our petition/letter. Albeit a predictable one. Well done to all those that signed & spread the message. Hopefully today's Long Covid & M.E. Joint APPG meeting will pick this up & fight for services & treatments @joplatt.bsky.social @binitakane.bsky.social
I've signed and shared the campaign calling for funding for treatment research and care for Long Covid and M.E.
you.38degrees.org.uk/p/LCME
you.38degrees.org.uk/p/LCME
Invest in Long Covid & M.E. Research: Thousands of Children DISABLED, DISCHARGED, & HIDDEN FROM VIEW
• Five years after the start of the Covid pandemic, thousands remain severely ill - Many housebound or often bedbound, unable to attend school, work, or take part in daily life. Disabled, discha...
you.38degrees.org.uk
March 27, 2025 at 7:30 AM
I've signed and shared the campaign calling for funding for treatment research and care for Long Covid and M.E.
you.38degrees.org.uk/p/LCME
you.38degrees.org.uk/p/LCME
I've signed and shared the petition calling for treatments and care
you.38degrees.org.uk/p/LCME
you.38degrees.org.uk/p/LCME
Invest in Long Covid & M.E. Research: Thousands of Children DISABLED, DISCHARGED, & HIDDEN FROM VIEW
• Five years after the start of the Covid pandemic, thousands remain severely ill - Many housebound or often bedbound, unable to attend school, work, or take part in daily life. Disabled, discha...
you.38degrees.org.uk
March 27, 2025 at 7:26 AM
I've signed and shared the petition calling for treatments and care
you.38degrees.org.uk/p/LCME
you.38degrees.org.uk/p/LCME
Thank you. I've signed and shared the petition
you.38degrees.org.uk/petitions/in...
you.38degrees.org.uk/petitions/in...
Invest in Long Covid & M.E. Research: Thousands of Children DISABLED, DISCHARGED, & HIDDEN FROM VIEW
• Five years after the start of the Covid pandemic, thousands remain severely ill - Many housebound or often bedbound, unable to attend school, work, or take part in daily life. Disabled, discha...
you.38degrees.org.uk
March 27, 2025 at 7:20 AM
Thank you. I've signed and shared the petition
you.38degrees.org.uk/petitions/in...
you.38degrees.org.uk/petitions/in...
Thank you. A video for my own child who has severe long covid /M.E. (bedbound & light sensitive).
I've signed and shared the petition calling for govt to allocate funding for biomedical treatment research for Long Covid and M.E. and stop clinic closures
you.38degrees.org.uk/p/LCME
I've signed and shared the petition calling for govt to allocate funding for biomedical treatment research for Long Covid and M.E. and stop clinic closures
you.38degrees.org.uk/p/LCME
March 23, 2025 at 5:20 PM
Thank you. A video for my own child who has severe long covid /M.E. (bedbound & light sensitive).
I've signed and shared the petition calling for govt to allocate funding for biomedical treatment research for Long Covid and M.E. and stop clinic closures
you.38degrees.org.uk/p/LCME
I've signed and shared the petition calling for govt to allocate funding for biomedical treatment research for Long Covid and M.E. and stop clinic closures
you.38degrees.org.uk/p/LCME