Top Tweets for #YPwME
I visited an 11-year-old girl today who has had ME/CFS for 4 years. Turning was only possible without light & max 20 min, speaking only very quietly. But she wanted to tell me something: "I wish we wouldn't be forgotten." The mother is a nurse 🧵@BarbaraKaufmann #SevereME #ypwME
The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample @CenterRes et al. #MECFS #YPwME #Pediatrics https://t.co/rfDQmQTVV2
Physical and functional impact of myalgic encephalomyelitis in childhood (2010) #MECFS #YPwME #PwME #Pediatrics via @MEResearchUK https://t.co/kLwDMCgTHc
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer (2017) #MECFS #YPwME #PwME #Pediatrics https://t.co/y13kAzoHu3
JNR Neuroscience Journal: These findings suggest changes in hypothalamus connectivity may occur in adolescent ME/CFS, warranting further investigation to uncover the biological mechanisms associated with this complex illness. #MECFS #YPwME #Neurology #MRI https://t.co/hhRy9Hpb8D
“Although these more common groups of diagnoses did not always occur in the same sets of patients, this constellation of diagnoses is suggestive of myalgic encephalomyelitis.” #MECFS #YPwME #PAIS #LongCOVIDKids #Pediatrics
“This article vividly describes the reality of severe ME/CFS in adolescence.
These are patients who are hardly seen in the healthcare system because the structures for adequate care are missing.” @neurostingl #SevereME #MECFS #PwME #YPwME
Dieser Artikel beschreibt eindrücklich die Realität von severe ME/CFS im Jugendalter.
Das sind Patient*innen, die im Gesundheitswesen so gut wie nicht gesehen werden, weil die Strukturen für adäquate Betreuung fehlen.
https://t.co/UpI87HLBTU
🧵
ME/CFS in children and young people - Dr Nigel Speight & Debbie Burgess (@tymestrust) (2020)
https://t.co/HHF4dwhh3u
Tom comments: I just watched this and thought both speakers spoke very well.
#MyalgicEncephalomyelitis #MEcfs #PwME #YPwME #YPwMEs #LongCovidKids #YPwC
1/
YOUNG HEARTS DAY 29TH NOVEMBER is @tymestrust's day to remember all #ypwme. Light a candle, tweet it to @JaneCColby and I'll RT. You can also request a little YH gift for your young person with ME. Send their NAME, AGE & full address on our ContactUs form https://t.co/7C4qdRelGu
Impact of Long Covid on the school experiences of children and young people: a qualitative study
Small cohort but valuable recommendations.
➡️Don’t underestimate the impact of LongCovid on the school experiences of children and young people (CYP).
➡️But, the impact is much broader: teachers, Schools, Friends, Family etc!😢
AGAIN, HIGHTIME TO INVEST IN SAFE SCHOOLS, THESE CYP ARE OUR FUTURE! 😠
https://t.co/93wiwI5jVT
Medically Documenting Disability in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Cases #MECFS #PwME #YPwME #Disability #Pediatrics #Law #MEdEd https://t.co/Gs1tyVeiJT
“You can lose your life, without dying.” Mila is a #YPwME, she’s one of the #MillionsMissing from life due to #SevereME and the utter neglect of medicine & society: https://t.co/1V8HzNurx4 #PwME #MECFS Her mother @SabineHermisson shares her story. 💙💔💙
#Pediatrics: Around 40,000 children suffer from #MECFS in Germany alone.
For the care of pediatric patients with ME/CFS, a nationwide network must be established, doctors demand at the 🇩🇪 Pediatric and Adolescent Physicians Day. #PwME #YPwME #G93.3 https://t.co/6vAXKJOg97
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