United Kingdom: Long Covid Kids
- Thread starter rvallee
- Start date
I know they have something about PEM on their site but at least until recently they disavowed ME as a follow-on to some LongCOVID. Has that stance changed?
https://www.longcovidkids.org
Interesting to see the 'and related illnesses' there in the Purpose.
One of the people involved has ME/CFS and has a child with ME/CFS.
Interesting to see the 'and related illnesses' there in the Purpose.
One of the people involved has ME/CFS and has a child with ME/CFS.
Chandelier
Senior Member (Voting Rights)
From Bluesky:
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Long Covid Kids
Recommendations for journalists to counter epistemic injustice in reporting Long Covid and similar conditions.
[A Critical Analysis of UK Media Characterisations of Long Covid in Children and Young People, 2024, Connor et al (s4me)]A critical analysis of UK media characterisations of Long Covid in children and young people - PMC
Long Covid is the continuation or development of symptoms related to a SARSCoV2 infection. Those with Long Covid may face epistemic injustice, where they are unjustifiably viewed as unreliable evaluators of their own illness experiences. Media ...pmc.ncbi.nlm.nih.gov
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Chandelier
Senior Member (Voting Rights)
Posts from Bluesky:
“It is particularly important to me that our voices are heard by those who have the power to influence change.”Bethan, diagnosed at 16, now 21, reflects on the APPG on #LongCovid & why young people’s voices need to be heard.
Read her account
“It shouldn’t take 6 years to get listened to for the first time.”Kitty shared her experience of growing up with Long Covid at the APPG on Long Covid.
Read Bethan's #blog and what the meeting means to her.
“It is particularly important to me that our voices are heard by those who have the power to influence change.”Bethan, diagnosed at 16, now 21, reflects on the APPG on #LongCovid & why young people’s voices need to be heard.
Read her account
“It shouldn’t take 6 years to get listened to for the first time.”Kitty shared her experience of growing up with Long Covid at the APPG on Long Covid.
Read Bethan's #blog and what the meeting means to her.
Chandelier
Senior Member (Voting Rights)
Long Covid Kids developed an Individual Healthcare Plan (IHCP) template, available for download as Word or PDF, scroll to the bottom at https://www.longcovidkids.org/download-resources
Bluesky link.
How will school know what my child needs when their health changes day to day?
For children with Long Covid and other prolonged, fluctuating and energy-limiting illnesses, the support they need at school may change too.
An Individual Healthcare Plan can help.
#BackToSchool #LongCovidKids
15122
1. Sept. 2026 at 4:10 PM
2/4
In England, schools have a legal duty to make arrangements to support pupils with medical conditions.
Disabled pupils may also be entitled to reasonable adjustments under the Equality Act 2010.
An #IHCP can help put individual needs and support into writing.
#BackToSchool #Education
3/4
What can an Individual Healthcare Plan include?
What matters to the child
Symptoms & medication
Support & reasonable adjustments
Energy & activity management
️ Access to breaks & quiet space
How their health affects education
#IHCP #BackToSchool #SEND#Education
Our FREE IHCP template is available in Word and PDF to help families and schools start these conversations.
It may also be useful elsewhere, although education law, guidance and processes differ.
www.longcovidkids.org/download-res...
Every child deserves a childhood they can participate in.
How will school know what my child needs when their health changes day to day?
For children with Long Covid and other prolonged, fluctuating and energy-limiting illnesses, the support they need at school may change too.
An Individual Healthcare Plan can help.
#BackToSchool #LongCovidKids
15122
1. Sept. 2026 at 4:10 PM
2/4
In England, schools have a legal duty to make arrangements to support pupils with medical conditions.
Disabled pupils may also be entitled to reasonable adjustments under the Equality Act 2010.
An #IHCP can help put individual needs and support into writing.
#BackToSchool #Education
3/4
What can an Individual Healthcare Plan include?
What matters to the child
Symptoms & medication
Support & reasonable adjustments
Energy & activity management
️ Access to breaks & quiet space
How their health affects education
#IHCP #BackToSchool #SEND#Education
Our FREE IHCP template is available in Word and PDF to help families and schools start these conversations.
It may also be useful elsewhere, although education law, guidance and processes differ.
www.longcovidkids.org/download-res...
Every child deserves a childhood they can participate in.
This looks useful.
Utsikt
Senior Member (Voting Rights)
The Cautious Tortoise is decent, but it has a subtitle of «pacing for recovery» and it does not acknowledge that recovery might not happen at all.
The Pacing Penguins talk about how to manage your «energy» and it doesn’t give the impression that you can feel awful no matter what you do.
The Young Person’s Glossary has a few memes, like having identified over 200 LC symptoms, and dysautonomia. The descriptions aren’t internally consistent. The one for PEM is good, but the one for pacing just talks about «impact on energy levels afterwards».
The Living With Covid guide is very good based on skimming the titles.
The Pacing Penguins talk about how to manage your «energy» and it doesn’t give the impression that you can feel awful no matter what you do.
The Young Person’s Glossary has a few memes, like having identified over 200 LC symptoms, and dysautonomia. The descriptions aren’t internally consistent. The one for PEM is good, but the one for pacing just talks about «impact on energy levels afterwards».
The Living With Covid guide is very good based on skimming the titles.