🧵 “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
of #MECFS, meaning it may be an important subset of patients but isn’t exactly the same”
Researchers said :
The researchers said certain symptoms seemed to cluster together.
People with loss of smell or taste didn’t seem to have many other symptoms
A second group reported
mainly postexertional malaise, fatigue and gastrointestinal trouble but no trouble with thinking or memory.
A third subset reported mostly postexertional malaise, fatigue and brain fog.
A fourth group – the most severely affected – had multiple symptoms and most commonly
reported fatigue, postexertional malaise, heart palpitations, dizziness, brain fog and weakness.
This symptom does NOT apply to kids, who will be getting their own LC scale.
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.
"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
💈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.
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.
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
CEO Sammie McFarland handed in the new charities NEW support guide available as a free digital resource for families, kids, schools, healthcare professionals parents and caregivers.
Founder and CEO of LCK Sammie Mcfarland "Today is an incredible testimony to all the family's children and volunteers from our organisation who have worked tirelessly throughout the pandemic to raise awareness for children living with Long Covid who have been ignored.