Long Covid Kids - #LongCovidKids Profile picture
Sep 23, 2021 10 tweets 8 min read Read on X
1) "A change to the main list of #COVID19 symptoms is “in process” after months of inaction"@PHE_uk
"how can we expect families to know when to get their child tested, & when to stop sending them into school so that they then reduce
#longcovidkids
bit.ly/3o0FAd0
2) the risk of transmission"
LCK would like to see the 🇬🇧 #COVID19 symptom list align with the @CDCgov 🇺🇸 list which includes the symptoms that our families have been reporting since LCK started.

A source who used to work for #testandtrace highlights
3) that clinical caseworkers were identifying trends in the variability of symptoms in kids as far back as a couple of months after the service went live in 2020.
Concerns were fed back continuously but the guidance about what symptoms
#TestToProtect
bit.ly/2W7jIB6
4)should trigger the need for a test was never updated. Initially, it was felt that perhaps this was linked to test capacity but since that has been expanded they are surprised that the symptoms have never been updated or that there hasn’t been clearer public messaging on how
5) #COVID19 infection can present differently in those of different ages.
They wouldn’t be surprised if the presentation in those who have been vaccinated has also changed and that the cough, loss of sense of smell/taste and fever are no longer helpful as the only symptoms that
6) trigger testing (and have not been for some time). Equally knowing that they shouldn’t have ordered tests without one of these three symptoms people may have lied to tracers and they were advised not to advise contacts go for a test unless they were experiencing one of these
7) three symptoms even when there were other #COVID19 cases in the house and therefore it was highly likely that the child with the runny nose also had the infection.
Tracers collate all symptoms someone has experienced at the time of the call - at times when the system was
8)overwhelmed this may not have been until 5 days after symptoms started and there were definitely signs that children developed one of these three symptoms later in their illness. These were not differentiated in terms of onset and it was only through tracers reflecting on cases
9) together that different patterns emerged.

PLEASE CONSIDER SIGNING OUR PETITION
#longcovidkids #livingwithcovid
@SafeEdForAll_UK @ZeroCovAlliance @ResearchAidNet @LongCovidSOS @long_covid @ClaireHastie1 @maxwele2 @mdbuckle @LCKIreland
chng.it/nZ2KRKhd
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More from @LongCovidKids

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
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
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
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
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
May 26, 2023
🧵 “researchers say they’ve come up with a list of 12 symptoms that can reliably classify someone as having Long Covid a working definition that should accelerate research into the disabling condition.”
#LongCovid @CNN
amp.cnn.com/cnn/2023/05/25…
Postexertional malaise, or the worsening of health after mental or physical activity
• Fatigue
• Brain fog
• Dizziness Gastrointestinal symptoms
• Heart palpitations
• Changes in sexual desire or capacity
• Loss of or change in smell or taste
• Thirst
• Chronic cough
• Chest pain
• Abnormal movements

“although most people in the study who met the definition of #MECFS also met the definition of #LongCovid the converse wasn’t necessarily true.  Among people who met the definition of LC only about 10% to 20% would have also met the definition
Read 8 tweets

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