Thread by @LongCovidKids

1) Welcome to all our new followers 🤗
#LongCovidKids runs on goodwill and support, so thank you for being here. #gratitude
What does LCK do though? If you are new, you might be wondering, so we thought we would a tweet thread might help!
We started ⬇️
bit.ly/3pU0oju

2) This brought lots of #longcovidkids families to our door, so we set up a place to connect & now support over 2000 families all facing the same challenges. Since December we have been welcoming about 100 families, often with multiple #longcovid kids.
facebook.com/groups/longcov…

3) We realised #longcovidkids was different to #longcovid so we set up the #LongCovidKidsStudy with @PeopleWithApp to learn more & support researchers & Drs.
Download the app to get involved & select Long Covid Kids to be involved.
bit.ly/PeopleWithAndr…
bit.ly/PeopleWithiOS

4) Hearing & experiencing the daily struggles of families experiencing disbelief, finding their #longcovidkids symptom concerns were minimised & ignored we started sharing members stories to raise awareness. @DailyMailUK were the 1st to help us.

dailymail.co.uk/health/article…

5) As LCK featured in multiple articles we have experienced an increase in trolls, doubters, and deniers, as well as enquiries. We now answer about 30 emails a day....yes, we are all volunteers.
So we set up a website to give more info on #longcovidkids
longcovidkids.org/long-covid-kid…

6) It wasn't long before we started hearing from international groups and families with #longcovidkids. Now our website is translated into 10 languages & we have launched a campaign to highlight the effects of #Covid on kids. #LCKGlobal

longcovidkids.org/member-stories. .

7) Although we are often told that #longcovidkids is 'in our heads we know that isn't true. We know the truth that #Covid harms children is economically unpleasing but we won't let it get swept under the carpet. We will continue to ensure children have a voice in this pandemic.

8) So we advocate, to the best of our #LongCovid ability while caring for #longcovidkids; attending meetings, and giving presentations with/to @NHSEngland @fhcappg @WHO @ISARIC1 @ptsafetylearn @NEUnion @IHM_tweets @AHPLeader @GloPID_R , #teamwork

longcovidkids.org/our-team

9) Observing so many kids, we noticed 'trends/clusters' so we launched our own survey. The 1st recorded #longcovidkids symptoms, the 2nd looked at specific clusters.
preprints.org/manuscript/202…

10) Interestingly many adult surveys are self-reporting, and yet for some reason, this seems to be an issue for #LongCovidKids 🤔 We are asking why?

We report honestly on the @ONS & @GOVUK #COVID19 child figures & why they are likely to be under-reported.

11) We are calling for a clear @govuk child-focused public awareness campaign to help families recognise #COVID19 symptoms, when & why to #testtoprotect
Why is the @CDCgov symptom list so much more comprehensive @MattHancock @JimBethell ? Can you update the @NHSuk list, please?

12) We work hard at #mythbusting, yes #LongCovidKids experience debilitating #fatigue, but they also experience #chestpain, #rashes, #jointpain, #swelling, #siezures #neuropsychiatric symptoms , #nausea, #insomnia, #covidtoe & more. #paediatric #research is vital.

13) More than anything we want to prevent more kids from sharing our story. We are calling for the @educationgovuk to put robust mitigation measures in schools.
Our awareness pack provides information to support informed decision making.
#LCKSchoolPack longcovidkids.org

So there you go, that's us in a nutshell.
Oh & we run our SM, signpost families, collate research articles & network.

If you would like to support us please RT/donate/ask your followers to follow us and add #Longcovidkids or 🧡 to your profile. 🙏🏼
longcovidkids.org/donate

Not an easy watch, these images may be upsetting. They certainly are for the families living with them day in, day out.
#longcovidkids needs understanding, #BeKind. You may not want to believe it exists, but it does, and we hope can avoid it. #StaySafe #LongCovidKids

@surf4children @DrMunblit @maxwele2 @Dr2NisreenAlwan @AHPLeader @doctorasadkhan @ferranespuny @chrischirp @CMO_England @whjm @_NatashaDevon @VanessaOnAir @BBCRadioSolent @itvwestcountry @BBCNicola @VictoriaITV @theJeremyVine @ahandvanish @selkieO @Know_HG @ClaireHastie1

Oooh that should say 100 a week !