"The parents try to navigate in an unfamiliar world, searching for someone to believe in them and their child, and describe the relief when their child's condition is confirmed. The findings also demonstrate the depth of suffering, not only for the child but also for the whole family."
The Australian ME/CFS & #LongCOVID (AusME) Registry is an online study of individuals aged 12yrs+ with ME/CFS and Long #COVID, as well as healthy volunteers
"U.S. is turning its back on long COVID. We'll pay the price if we don't act."
"There is a hidden public health crisis in America that we can no longer ignore. And that is the crisis of long COVID-19
… about 16 million people throughout our country have long COVID-19. It affects people of all ages and from all backgrounds. And we don’t know why."
@oldperl@longcovid
Am 7. Oktober, als ich von dem hamaSS-Anschlag noch nichts wusste, erzählten in einer Stuttgarter S-Bahn von Long-Covid betroffenre Frührentner, in der psychosomatischen Reha schärfte ihnen die Psychologin ein "Sie müssen die Formulierung 'Ich muß' komplett aus ihrem Wortschatz streichen."
"Associations between Long #COVID and challenges related to housing stability and home accessibility highlight the need for systemic changes, financial support, and advocacy."
A new issue of our Patient-Generated Hypotheses Journal is out! It includes hypotheses on mechanisms & treatments for #LongCovid, ME/CFS, & POTS from patients & caregivers with diverse backgrounds, ranging from PhDs to self-taught patient experts
"Post-exertional malaise (PEM) isn’t due to laziness or deconditioning." - Clayton Powers, DPT Do your symptoms worsen when you push yourself beyond your energy threshold? Powers explains what PEM is in this short video: https://youtu.be/UkS6L3Klc00
CPET performed in a well matched cohort with and without acute Covid. "Patients with #COVID19 peculiarly showed a high degree of VE inefficiency as signaled by a marked increase in VE/VCO2 slope"
Trial by Error by David Tuller: Athlete Oonagh Cousins on the Lightning Process
A conversation with world-class rower Oonagh Cousins who got long Covid and whose story has been told by the BBC.
The BBC also covered her negative experience with the contested alternative treatment Lightning Process which she says is exploiting people.
NIH Director Monica Bertagnolli ( @NIHDirector ) comments last week at the NIH ACD (Advisory Committee to the Director) Meeting on Long COVID & RECOVER
"The aim of this meta-analysis is to describe objective cognitive impairment in individuals with non-severe (mild or moderate) #SARSCoV2 cases in the post-acute stage of infection”
“Although studies have suggested many patients with long #COVID experience mental health challenges, we did not find that depressive symptoms prior to #SARSCoV2 infection were a major risk factor for long COVID”