This episode of the podcast is a December 2020 interview with Gina Assaf (Gina’s Twitter, and her Covid research Twitter) about her patient-led research on “long haul” Covid, which refers to long term Covid-19 effects that persist longer than is typically recognized as normal. Such long-term covid effects can include exhaustion and cognitive impairment (sometimes called “brain fog”). Assaf is not a professional medical researcher; her background is in web/app design and technology consultancy. But she was motivated to initiate this research due to her own covid experiences and frustration with the lack of information about her, and other sufferers’, experiences. I ask Assaf about the benefits and challenges of such “patient led” research, and interesting findings her team has made. One topic of interest is the similarity between long haul covid and Chronic Fatigue Syndrome (CFS, ME) symptoms, especially because one theory of CFS is that it can be started by a viral infection. Episode links:
Topics discussed and relevant links include:
- Article on Assaf’s work: Covid-19 “long haulers” take symptom research into own hands
- MIT article about patient-led long-haul covid research
- NY Times article on Assaf’s work: For Long-Haulers, Covid-19 Takes a Toll on Mind as Well as Body
- Time magazine piece on similarities between long haul covid and CFS/ME
- My (Zach Elwood’s) site on CFS/ME, which includes a post about my CFS experiences, an interview with CFS researcher Dr. Nancy Klimas, and ideas for a CFS data-gathering project.