Edit: another one
Did the BBC ever cover the Millions Missing protests? Not mad about this coverage, but the only difference here is perception, this is essentially the same issue.
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I've had a quick look through some of the information on Long Covid Kids. They look really well organised and producing some good materials and support systems.
Denise
Senior Member (Voting Rights)
I've had a quick look through some of the information on Long Covid Kids. They look really well organised and producing some good materials and support systems.
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?
Our Purpose
We believe all children should be able to thrive and look forward to a positive future.
That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.
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.
Sarah O Connell
Lead LCK Representative for IrelandSarah and her daughter suffer from post viral ME/Chronic Fatigue Syndrome. She has a BA in Psychology and MA in Psychoanalytic Theory. Sarah has seen first hand the devastation caused by post viral illness.
She is passionate about fighting for proper recognition and services for those with post viral illnesses. She is eager to fight for adequate care for the huge number of families effected by Long Covid.
From Bluesky:
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)]
Text OCRed from image:
5 RECOMMENDATIONS FOR JOURNALISTS
Verify information to avoid unsubstantiated opinions
- Seek to corroborate the experiences of children and young people with Long Covid, and their parents
- Provide context for subjective perspectives on how "rare" or "serious" Long Covid is
Provide a balanced perspective and challenge stigmatising narratives
- Be aware and mindful of stigmatising narratives
- Ensure that healthcare professionals validating
Long Covid are adequately represented- Actively seek insight from those with lived experience, and recognize their expertise
Recognise the challenges and experiences of children with Long Covid
• This deepens societal understanding and helps combat hermeneutical injustice
Prioritise care over sensationalism
• Emphasise the need for proper diagnosis and care for children and young people with Long Covid, rather than focusing solely on dramatic elements of individual cases
Be mindful of language
- How actors are introduced and described affects how credible they appear
- How Long Covid is described shapes views on its causes and legitimacy
- Consider how affected people might feel when reading the article
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.
The All-Party Parliamentary Group (APPG) Meeting on Paediatric Long Covid | A Young Person’s Account
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