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Long Covid Kids - #LongCovidKids Profile picture
@LongCovidKids
Jun 1, 2022 • 13 tweets • 19 min read • Read on X
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💈On the day the @ons report 26,000 CYP have symptoms for at least a year (⬆️ 3000 from last mth)
we received an email from @10DowningStreet in response to our visit on April 1st
It confirms the concerns of the children⬇️

"We feel ignored"

@FYI_SkyTV

April 1st - 12 #children living with #LongCovid traveled
to #london to deliver their own letters documenting their #pain, loss of #sight, #mobility, organ damage, diagnosis of #PANS #MECFS #FND #POTS #MCAS and the detrimental impact it has had on their lives.

#LongCovidKids
100+ page guide providing evidence-based information on #LongCovid in CYP from industry experts, research, and statistics from @GOVUK @ONS.
Did anyone read it?
We were assured @BorisJohnson would receive it.

#LongCovidKids
15 mentions of #mentalhealth , 1 mention of #LongCovid

This incredulous response demonstrates the ongoing need for our charity to be a voice for CYP impacted by #SARSCoV2.
#COVID19
#LongCovidKids

Read the email ⬇️
All in the same week as @sajidjavid commitment to "improve the lives of people with ME"
"For too long it hasn’t received enough attention which is why I will develop a cross-govt plan to improve outcomes"
#LongCovidKids #MECFS @actionforme #LongCovid
LCK 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.

The 2nd line in the email refs a letter sent to Sammie on 7/12/21, and although it does not relate to the visit to @10DowningStreet on 1/04/22 and the response received on the 1st, since it is mentioned and in the interest of transparency we inc it here.
#LongCovidKids
Just to add the funding mentioned has not gone into pediatric #research.
We are not aware of any @govuk biomedical paed research.
There is no 'treatment' for #LongCovid (although some symptom management is possible).
#Vaccines, were offered too late, & do not prevent
#LongCovid
Families experience threats from @nadhimzahawi attendance officers
There is not 'a concern' that CYP can't take part in usual activity, they are #disabled by symptoms
Phased returns are not suitable for relapsing/ remitting symptoms ⬇️

Who should 'regularly check in'?
Guidance suggested by @10DowningStreet is inadequate.

It is for all these reasons, and more, that volunteers and industry experts gave their time to create the support guide we delivered to @BorisJohnson @GOVUK to improve the outcomes for CYP.
Our FREE RESOURCE for #schools #families #children #youngpeople #HCPS #OTs #Physios #GPs #Schoolsnurses & all who need it
@suepeters21 @Occ4LifeLtd @Elodie_A_N @MichaelRosenYes @elisaperego78 @SGriffin_Lab
#ShineALightOnLongCovid #LongCovid #LongCovidKids
longcovidkids.org/support-guide
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#LongCovidKids
@Ruth5News
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More from @LongCovidKids

Long Covid Kids - #LongCovidKids Profile picture
Nov 27
Closing statement from Sarah Hannett KC on Children and Young People 27/11/24.

"Long Covid is a new childhood disease whose prevalence is equivalent to childhood diabetes"

#LongCovid #LongCovidKids #CovidInquiry
One teenager told Every Story Matters that "it's a big identity crisis, my Mum and I were fit active people, I was meant to be beginning pro ballet as a career"
"at a young age difficult a you are finding out who you are, it's an identity I don't want"

#LongCovidKids #LongCovid
"In the UK throughout 2020 there was no information published by @GOVUK stating that children & young people could have any, let alone debilitating symptoms from COVID/LongCovid"
"When families sought assistance for children suffering they were routinely dismissed"
@SammieFMc
Read 9 tweets
Long Covid Kids - #LongCovidKids Profile picture
Sep 6
🧵 Module 8 Prelim Hearing @covidinquiryuk @LongCovidKids @LCKScotland
CYP with #LongCovid suffered the double burden of the direct effect of their illness and disability as well as the indirect effects of the pandemic & it's associated measures felt by all CYP
Sarah Hannett KC
Some CYP have lost their lives to COVID-19, many continue to suffer from the life changing, disabling symptoms of #LongCovid

Patients & their families suffer the additional burden & stigma of being disbelieved and disparaged or having symptoms minimised or dismissed as anxiety
We agree with the observations made by the CRO that the Pandemic, & we would add #LongCovid, exacerbated and continues to worsen existing inequalities amongst CYP in terms of, for example social economic status, ethnicity & disability
#LongCovidKids
Read 17 tweets
Long Covid Kids - #LongCovidKids Profile picture
Dec 13, 2023
Listen to Long Covid Groups closing submission delivered by KC Anthony Metzer. 12/12/23
My Lady, I appear with Sangeetha Ienger and Shanthi Sivakumaran
Instructed by Jane Ryan of Bhatt Murphy
@Jane_Ryan_ @BhattMurphy @covidinquiryuk
#LongCovid #LongCovidKids #CovidInquiry
You heard from our client @SammieFMc during the impact films. In her statement, she said: “it has been extremely distressing to watch my child who had been previously completely healthy, happy and dancing around being unable to move and full of self-doubt. It was like watching
my child fade away – she is no longer the child she was.”

The LCG's have sought to understand how & why there was an inexplicable delay in the @GOVUK recognition of #LongCovid, when longer-term sequelae were foreseeable/ well-established from SARS and MERS.
#LongCovidKids
Read 13 tweets
Long Covid Kids - #LongCovidKids Profile picture
Oct 31, 2023
Three years ago while #LongCovid was being denied and ignored, despite available evidence @LongCovidKids families came together to make this made this awareness video advocating for CYP injured by #COVID.
3 years on, children are still sick.
#LongCovidRuinsLives #LongCovidKids
Listening to the witnesses at the @covidinquiryuk today has been extremely difficult, upsetting and traumatic for families.
We are distraught that the experiences of our children who both endured the pandemic and were injured by the virus, are not being heard. The inquiry
'listening' project WILL NOT hear directly from CYP with #LongCovid. Less than 20 children will be interviewed as part of a research project. Their experiences will analysed and shared alongside the experiences of a larger number of children who endured the pandemic. We feel
Read 6 tweets
Long Covid Kids - #LongCovidKids Profile picture
Oct 10, 2023
1/3 These are the words children use to describe their #LongCovid experience.
Friday is #LongCovid day at @covidinquiryuk
@LongCovidSOS Co-founder @selkieO
will give evidence on behalf of the Long Covid Groups.

We can't do this alone, we need your support.
#StrongerTogether Image
2/3 Their words remind us why we are part of the @covidinquiryuk
Join Us.
✅0915> @ Dorland House, 121 Westbourne Terrace London, W2 6BU
✅0800> online to support as we ask the @covidinquiryuk to #listen, #learn & give children & families #Hope

#ListenLearnHope
#GiveUsHope Image
3/3 The words of the young people injured by #COVID keep us focused on why we are part of the @covidinquiryuk

#Hidden
#Lost
#Broken
#Forgotten
#Disabled
#Stuck
#Trapped
#LeftBehind
#Ignored

#LongCovidKids #LongCovid #LongCovidAwareness Image
Read 4 tweets
Long Covid Kids - #LongCovidKids Profile picture
Jul 29, 2023
“These figures are extremely concerning. Children rarely get ill, so a disease affecting 2% of young children to a level that it’s causing restriction of day-to-day activity is a huge public health problem.”
@dgurdasani1

#LongCovidKids https://t.co/xFg2We5iwa
Image
“In the absence of vaccination, prior infection remains the only means by which children can, ironically, become immune, and evidence shows that ensuing protection is highly variable and often insufficient….

#LongCovidKids


#LongCovidKids https://t.co/4jUPn3lTAvinews.co.uk/news/science/t…
Image
…This, combined with low vaccine rates & a lack of mitigations, condemns kids to multiple reinfections that may lead to both #LongCovd & other forms of morbidity, as well as a proportion experiencing severe acute disease on breakthrough, w some sadly succumbing.” @SGriffin_Lab
Read 5 tweets

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