Medical & Science Journalists - Embargoed Long COVID - ISLC-PAIS

As a medical and science journalist with Long COVID, I’ve been searching for an organisation I can volunteer with to report on #LongCOVID and #MECFS science literally for YEARS and I finally found one! 🥳 I’m thrilled to be working as a #scicom and #media engagement volunteer with Rob Wüst and Michael Chapman to support the first ISLC-PAIS Conference in Amsterdam, which kicks off towards the end of August. I’ll be reaching out to medical and #sciencejournalists who have an interest in this area to share some of the (embargoed) breaking science news stories from the conference, and I’ll be connecting with Long COVID patient advocates who are doing important communications work within the communities they support. (Let me know how I can best support you! [email redacted]) I won’t have capacity to cover all the fascinating science that is being presented (see the program here: www.islc-pais.org/program) but there will be recordings available on demand after the conference (at a cost but complimentary for some specialist reporters on request). Here are some of the sessions I’m most keen on hearing: - Why is policy still failing Long COVID & PAIS patients in many countries? (David Kelly, David Putrino & Narita Saija) - Long COVID in Children: Defining Disease Through Clinical Observation and Biomarkers (Lael Yonker) - Long-term recovery throughout 5 years after COVID-19 in both hospitalised and non-hospitalised individuals (Karolina Stjernström) - Mechanism First: How PAIS Trials Must Evolve(Michael Peluso) Patient-centred treatment of Long COVID in the absence of (inter)national guidelines. (Binita Kane) - Exploring the impact of Long Covid and support received in comparison with other chronic conditions using GP Patient Survey Data (England) 2023 (Mirembe Woodrow) - Long COVID-associated diagnoses among children and adolescents – an analysis of nationwide ambulatory claims data in Germany (Julia Nübel) - The Neurobiology of sleep in Long COVID (David Joffe) I can only volunteer in this role because I’m now on so many effective medications for Long COVID, #POTS and #dysautonomia. So, for the first time in 5 years, I can tolerate doing a bit more additional work. (Yes, I might be going a bit overboard with that newfound freedom… woo hoo #science!) I made a promise to myself that if I got a bit better, I would dedicate part of my time to Long COVID advocacy, particularly to help children who are dealing with severe Long COVID and are currently being overlooked by governments worldwide - more to come on that too as I’ve got a feature brewing with The Sick Times! https://lnkd.in/gMbY_6ER