Thread by @Vickyvdtogt

'Promotion of non-evidence-based therapeutics within patient-led Long COVID support groups'

Our @Nature article is out now!

By @MartaEsperti, Elizabeth Semper, Sammie McFarland, Sara Citrenbaum and Dr Jeremy Rossman
nature.com/articles/s4159…

"Long COVID support groups began as a patient-led movement, providing safe spaces for patients (including children and their parents and caregivers) to discuss the disease and collectively advocate for awareness, research and support."

"However, in many groups, individuals and organizations have been promoting experimental treatments, ongoing clinical trials and for-profit treatment plans."
(See table in article)

"Given the current lack of understanding of the disease etiology of Long COVID and lack of any proven treatment options, patients are desperate for any offered hope."

"The net result can be an unethical situation that endangers patient health and wellbeing and decreases the integrity and effectiveness of the patient-led movement."

With @LongCovidKids, @UniKent @AcpeCovid, @LongCovidNL, @LongCovidItalia, @ResearchAidNet & @pandemicaid_net.