🧵 “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
Learn more about safe Long COVID rehabilitation in this video from @LongCOVIDPhysio

#LongCovidAwareness #LongCovid
#LongCovidKids

longcovid.physio/long-covid-vid…
The preliminary findings of our research with @DerbyUni on the @NHSuk paediatric Long Covid hubs can be found here.

We continue to work with NHS to improve experiences and outcomes for children.

#LongCovidKids #Feedback

longcovidkids.org/post/feedback-…
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More from @LongCovidKids

May 26
🧵 “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
Aug 6, 2022
🧵 Our guidebook provides information, support and signposting.

📕 Chapters for young people, parents & caregivers & schools.

🔬Evidence based information & case studies

🤗 Nobody has to feel alone.

To learn more ⬇️

longcovidkids.org/support-guide

#LongCovid #LongCovidKids ImageImageImageImage
Long Covid Kids started as a grassroots organisation in September 2020.

In October 2021 we became a registered charity.

Our patron is beloved children’s author @MichaelRosenYes

#LongCovidKids #LongCovid #MichaelRosen #Charity #Support #Children ImageImageImageImage
With the support of experts, scientists, paediatricians, doctors, nurses, researchers, advocates, occupational therapists, physiotherapists teachers & educational psychologists our team of volunteers created a guidebook to raise awareness & educate.

#LongCovidKids #LongCovid ImageImageImageImage
Read 26 tweets
Jul 6, 2022
Minimising the experience of children living with #LongCovid has an ongoing impact on those suffering.

"This is Daniel. He is 16 - LC for 16 months.
Due to ongoing stomach pains, he is scared of eating & now has an eating disorder too, skin & bone"

#LongCovidKids #ChildHealth
"This is Poppi. She is 7 - #PIMS March 21 after #Covid19, she was so poorly in @AlderHey for 2 weeks. Poorly ever since.
Reinfected in Feb 2022 at school - now worse than ever. Drs haven't a clue what's wrong with her I, want my little girl back"
#LongCovidKids
Meet Emily Saville
"battling Long Covid since September 2021. Fit and well with no underlying health issues before. Now uses a wheelchair when going out of the house due to chronic fatigue and is relearning to walk again"
#LongCovidKids @lou_sav
Read 8 tweets
Jun 1, 2022
💈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
Read 13 tweets
May 5, 2022
1) Are you taking parental leave or having a break from work to care for your children with #longcovid?

A parent asks -

“I am wondering how parents are managing their work life whilst their little ones are so poorly. So far I have juggled things and taken annual leave but
2) it’s difficult to see how this is sustainable with no end in sight.

@longcovidwork @DHSCgovuk @CitizensAdvice
are you able to help ?

#LongCovidKids
Parent

"If my husband wasn't still working at home, I'd have to give up work. Daughter 17 but needs reminded to eat, drink etc"

#LongCovidKids @longcovidwork
Read 17 tweets
May 4, 2022
Have you seen the #LongCovidKids Padlets?
@padlet is an interactive website/app that provides a visual library of internet links that our team updates as new information emerges.
Think of it as a scrapbook of useful links
Since the start of the pandemic, we have been collating
resources & info to help us improve recognition, support & recovery
We have five Padlets suitable for different audiences;
• Children bit.ly/3DbaR2d
#LongCovidKids #ShineALightOnLongCovid
@FYI_SkyTV @suepeters21 @tes @ihv @earlyyearsontap @LucindaNatDoc @PYL_London
Read 7 tweets

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