💈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⬇️
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.
This incredulous response demonstrates the ongoing need for our charity to be a voice for CYP impacted by #SARSCoV2. #COVID19 #LongCovidKids
Read the email ⬇️
All in the same week as @sajidjavid commitment to "improve the lives of people with ME"
"For too long it hasn’t received enough attention which is why I will develop a cross-govt plan to improve outcomes" #LongCovidKids#MECFS@actionforme#LongCovid
LCK believe all children should be able to thrive and look forward to a positive future.
That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.
The 2nd line in the email refs a letter sent to Sammie on 7/12/21, and although it does not relate to the visit to @10DowningStreet on 1/04/22 and the response received on the 1st, since it is mentioned and in the interest of transparency we inc it here. #LongCovidKids
Just to add the funding mentioned has not gone into pediatric #research.
We are not aware of any @govuk biomedical paed research.
There is no 'treatment' for #LongCovid (although some symptom management is possible). #Vaccines, were offered too late, & do not prevent
#LongCovid
Families experience threats from @nadhimzahawi attendance officers
There is not 'a concern' that CYP can't take part in usual activity, they are #disabled by symptoms
Phased returns are not suitable for relapsing/ remitting symptoms ⬇️
Who should 'regularly check in'?
Guidance suggested by @10DowningStreet is inadequate.
It is for all these reasons, and more, that volunteers and industry experts gave their time to create the support guide we delivered to @BorisJohnson@GOVUK to improve the outcomes for CYP.
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
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
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
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
3/3 The words of the young people injured by #COVID keep us focused on why we are part of the @covidinquiryuk
“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
“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….
…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
🧵 “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
“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
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.
🧵 “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