Si Craner

Tessa Munt MP highlights how Germany is taking post-infectious diseases seriously, committing €500m over 10 years to research #MECFS & #LongCOVID. She asks if the UK Government will make a comparable commitment, or wait a decade for the Germans’ conclusions before taking action?

...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

YouTube video by Combination Dance Lives Interrupted: The Voices of Young People with Long Covid

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?...

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...

- 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

YouTube video by Combination Dance Lives Interrupted: The Voices of Young People with Long Covid

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?...

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

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.

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...

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

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

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...

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

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?

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

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...

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...

@daltmann.bsky.social

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

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...

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

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...

I've signed and shared the petition calling for treatments and care
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...

Thank you. I've signed and shared the petition
you.38degrees.org.uk/petitions/in...

Image of letter. Please follow the link for accessible version - https://www.longcovidkids.org/post/open-letter-to-the-rt-hon-wes-streeting-and-ashley-dalton-mp-march-2025

As part of Long Covid Awareness Month, and to mark the fifth anniversary of the first UK lockdown, we have sent an open letter and petition to @wesstreeting.bsky.social & @ashleydaltonmp.bsky.social

#LCandME #FundOurFuture #FundThePlan

www.longcovidkids.org/post/open-le...

Thank you 🙏🙏🙏

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

Thank you for sharing! Let's hope the new guys don't keep brushing us under the carpet!

Thank you! #FundThePlan

My son is one of 100,000 CHILDREN and millions of adults left with Long Covid and M.E. 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

My son is one of 100,000 CHILDREN and millions of adults left with Long Covid and M.E. 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

My son is one of 100,000 CHILDREN and millions of adults left with Long Covid and M.E. 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

My son is one of 100,000 CHILDREN and millions of adults left with Long Covid and M.E. 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

My son is one of 100,000 CHILDREN and millions of adults left with Long Covid and M.E. 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