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Long Covid Kids - #LongCovidKids Profile picture
@LongCovidKids
Apr 1, 2022 • 15 tweets • 23 min read • Read on X
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These children have endured chronic and disabling symptoms.

Today they handed in their letters for @BorisJohnson to share their experience, hopes & ongoing infection risk fears.

#ShiningALightOnLongCovid #LongCovid #LongCovidKids
CEO Sammie McFarland handed in the new charities NEW support guide available as a free digital resource for families, kids, schools, healthcare professionals parents and caregivers.

#ShineALightOnLongCovid #LongCovid #LongCovidKids
Founder and CEO of LCK Sammie Mcfarland "Today is an incredible testimony to all the family's children and volunteers from our organisation who have worked tirelessly throughout the pandemic to raise awareness for children living with Long Covid who have been ignored.
The Prime Minister wasn’t able to be there due to “diary constraints” but the guardian has promised he will get them.
Long Covid is a preventable condition. We can prevent it by avoiding infection.

Everyday children are in school without improved indoor air quality they are
At risk.

We have CYP joining our support services who are developing LC after a 2nd/3rd infection, even through they didn’t develop #LongCovid after their 1st infection.
We asked the Prime Minister for his urgent attention and support.
#ShiningALightOnLongCovid #LongCovidKids
Our pack is about post viral illness that has been ignored & that we believe may be triggered by #COVID19 but that needs more research.

We were pleased to work with @PandasPans @FNDHopeUK @MEAssociation @MastCellAction @UKPoTS #PIMS
to highlight these conditions.
#ShineALightOnLongCovid #LongCovidKids

@kategarraway @benshephard @lou_sav

Thanks, @CallumHoare_ @Daily_Express

#ShineALightOnLongCovid
#LongCovid
#LongCovidKids

Read the letters the children delivered to @BorisJohnson
@10DowningStreet
#ShineALightOnLongCovid
#LongCovid #LongCovidKids
@MailOnline

#ShineALightOnLongCovid
#LongCovid
#LongCovidKids

dailymail.co.uk/femail/article…
#ShineALightOnLongCovid
#LongCovidKids
#LongCovid
#kids
#Charity
#donate
#fundraising
#NotForProfit
@BBCNews

bbc.co.uk/news/uk-englan…
#ShineALightOnLongCovid
#LongCovid
#LongCovidKids

@Daily_Express @CallumHoare_ @BorisJohnson

express.co.uk/news/science/1…
#ShineALightOnLongCovid
#LongCovidKids
#LongCovid
#kids
#Charity
#donate
#fundraising
#NotForProfit
@BBCNews
@lou_sav
bbc.co.uk/news/uk-englan…
Thank you @bbcpointswest
#ShineALightOnLongCovid
#LongCovidKids
#LongCovid
#kids
#Charity
#donate
#fundraising
#NotForProfit
@BBCNews
@lou_sav
Thanks @SkyNews
#ShineALightOnLongCovid
#LongCovidKids
#LongCovid
#kids
#Charity
#donate
#fundraising
#NotForProfit
@BBCNews
@suepeters21

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More from @LongCovidKids

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
Long Covid Kids - #LongCovidKids Profile picture
May 29, 2023
🧵 “We now need to explore whether the lack of implementation is due to a lack of commissioning of services, or whether it represents centres choosing not to follow the guidance & use alternative strategies without evidence base.” @DocStrain

#MECFS #NHS
thetimes.co.uk/article/thousa… Image
“It is important that decisive action is taken to address these issues and ensure that #MECFS patients receive the appropriate care they deserve,
@SonyaChowdhury
@actionforme

#PostViralIllness #Disability #Health Image
With > 2 million people living with Long Covid, and > 50% said to meet the criteria for #MECFS and therefore @NICEComms guidelines communities must stand together to ensure safe rehabilitation & care.

The full article can be seen here.
Thanks @ABrokenBattery

#LongCovidKids
Read 6 tweets

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