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Long Covid Kids Official HQ 🧡 #FBLCK #FBLC Profile picture
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16 Aug, 9 tweets, 13 min read
1) We have been politely asking the @NHSuk to update its child #COVID19 symptom list since the end of 2020.

How can we expect families to recognise #COVID symptoms if they are not clearly listed?
We are deeply concerned.
#Backtoschool
#Longcovidkids

nhs.uk/conditions/cor…
2) @CDCgov list updated Dec 2020 is more comprehensive

Fever
Fatigue
Headache
Myalgia
Cough
Nasal congestion
New loss of taste or smell
Sore throat
SOB or difficulty breathing
Abdominal pain
Diarrhea
Nausea/vomiting
Poor appetite / poor feeding

cdc.gov/coronavirus/20…
3) Let's compare, the @NHSEngland list alongside the #longcovidkids list.

We URGENTLY need to see the #NHS website updated before kids go #BacktoSchool2021

We know that #Delta is more transmissible.
We know that there has

#misinformation #symptoms #longcovid #FBLCK #FBLC
4) been an increase in child #COVID19 cases, despite the #summerholidays when more kids are outside.
#longcovidkids #makeschoolssafe @SafeEdForAll_UK @jneill @trishgreenhalgh @dgurdasani1 @Dr2NisreenAlwan
5) A return to indoor mixing without improved robust mitigation can surely only lead to one thing?

⬆️ Infections = ⬆️ #longcovidkids

@chrischirp THREAD on current Covid situation in the UK:

"both cases and hospitalisations remain very high"

threadreaderapp.com/thread/1426233…
6) Summary;
💔 No clear guidance for families - expect sick kids in #schools
💔 No change to mitigation in schools - expect transmission in schools
💔 No cure for #longcovidkids & AT LEAST 1 child in every class could suffer from #LongCovid.
@grahamja51
7) ....and just in case 1 child in every class doesn't concern you.....let's look at that figure.
@maxwele2 @ClaireHastie1 @selkieO @ZeroCovAlliance @JimBethell @MattHancock
longcovidkids.org/post/zoe-app-r…
@maxwele2 @ClaireHastie1 @selkieO @ZeroCovAlliance @JimBethell @MattHancock 8) Oh and let's not forget this. #longcovidkids
@dgurdasani1
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More from @LongCovidKids

Long Covid Kids Official HQ 🧡 #FBLCK #FBLC Profile picture
4 Sep
1) 💔 Written by a teenager who has #LongCovid, for a #EHCP application.

What are the child or young person’s views, wishes and feelings about their education? What are their motivators?

"Education is a massive part of anyone's life and because I have been so ill I feel like
2) I have been stripped of qualities and learning that every other child has the right to.
I have spent many months almost a whole year lying in a bed not being able to do anything, not only education but normal teenage activities including meeting friends and living life,
3)
 not only affects you physically but mentally too.
I see education as the groundwork for someone's life, what prepares them for the future, and being so ill, I feel like I’m way behind everyone else. Having that extra support would make a huge difference and help prepare me
Read 7 tweets
Long Covid Kids Official HQ 🧡 #FBLCK #FBLC Profile picture
3 Sep
1) This is Ethan, now aged 15, and ill for 18 months. He would like to be listened to and believed. He is certain that he is not anxious and that he definitely does not have "anything to gain" from debilitating daily symptoms.

#AlwaysOurBabies #LongCovidKids #BacktoSchool2021
2) Anna caught #covid in April 2020, 4 weeks later she had a terrifying "inflammatory response" & was so ill. The hospital refused to see her. She has #covid triggered #CFS & #PANS & been ill since. She's not the same happy, energetic little girl she was. 💔 #AlwaysOurBabies
3) This is Evie Mae, it doesn't seem two minutes ago that she was this little.
Now she's 13 and towers above me. Evie says she's tired of being tired.
Evie Mae has crippling #longcovid.
#longcovid #BacktoSchool2021
#longcovidkids #AlwaysOurBabies
Read 12 tweets
Long Covid Kids Official HQ 🧡 #FBLCK #FBLC Profile picture
3 Sep
1) 🆘🆘🆘 SPOT THE DIFFERENCE 🆘🆘🆘

Without ANY mitigation measures in school, can we at LEAST ask for a decent list of symptoms to help families identify #COVID infection, please?

We are worried.

@NHSEngland @NHSuk @DorsetCCG @JimBethell @MattHancock @sajidjavid
2) The @CDCgov has a more comprehensive list to help families in the #USA identify infection, and they offer the #vaccine and #masks

#backtoschool #longcovid #longcovidkids
3) Here is our list - these are the symptoms families report their children and young people had.
And before the trolls their evening #LCK bashing YES we do believe ANY symptom could be #COVID
Read 6 tweets
Long Covid Kids Official HQ 🧡 #FBLCK #FBLC Profile picture
3 Sep
1) 🌏🌍🌎🌍🌏

The experience of #longcovidkids members is that the activity levels of their children are significant.
Meet Joe
Time difference 10 mins
✅He can go to the park.
❌ He gets palpitations which he's had for 10mths he feels cold on the inside when they happen.
2) We will continue to tell the truth about #covid infection to educated families so that they can make informed decisions.
You can expect to see more stories showing children struggling with their health. This is a fraction of what the children and

3) young people are living with.
So far, everything we have posted, discussed, or raised concern about has been followed up (mths later) with research ...and it is still coming through. We have no reason to lie or exaggerate, our intention remains the
Read 8 tweets
Long Covid Kids Official HQ 🧡 #FBLCK #FBLC Profile picture
2 Sep
What does #longcovid look like in babies, children & young people?
Would you know how to spot it?
Would you know when to go to the GP?
Would they recognise #LongCovid
Would your GP know they can refer you to a #longcovidkids hub?
@NHSEngland @PHE_uk @JimBethell @MattHancock
We need a child focused public campaign.
#longcovidkids #BackToSchool #MEcfs #Longcovid #longhaulers #ProtectTheKids @Ecole_Oubliee @LCKScotland @LCKIreland @LckUsa @LongCovidCanada @ZeroCovAlliance @muntma @karamballes @GwynneMP @MichaelRosenYes @Zubhaque @DrZoeHyde
Every day there are more infections - there are more #longcovidkids
@NEUnion @educationgovuk #maskup #LongCovid
#NOTreassuring
@MEAssociation @PhysiosForME
#COVID #parents #teachers #schools #education #edutwitter #headteacher #kids #earlyyears #longhauler #longhaulers
Read 4 tweets
Long Covid Kids Official HQ 🧡 #FBLCK #FBLC Profile picture
1 Sep
🇬🇧NEW
1) The voices of chronically sick children & young people have been ignored throughout the pandemic.
It is crucial to the development of effective research, innovations, and services that lived experience is
#longcovidkids
#LISTENtotheKIDS
researchsquare.com/article/rs-798… ImageImage
2) represented. The findings of this study evidence that prevention MUST be our focus as kids go #BackToSchool

Download our #LCKschoolpack to learn more about #longcovid and how to reduce risk.
⬇️⬇️⬇️
longcovidkids.org @grahamja51 Image
3) LCK represents families around the world who are living with #kids who are chronically and significantly affected from #COVID19 wave 1/2/3. Many of whom are not recovering, this needs your attention.
We can only conclude that anyone who continues to minimise #longcovid in ImageImageImageImage
Read 4 tweets

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