Make Visible: Understanding Complex Illness #11 Post-Pandemic prevalence of ME/CFS - what we can learn from the increase with Suzanne Vernon, PhD
In her latest paper Suzanne Vernon, PhD, Scientific Director at the Bateman Horne Center, reveals that ME/CFS prevalence is now 15 times higher than pre-pandemic estimates.
The study, carried out by the RECOVER initiative, and published in the Journal of General Internal Medicine confirmed that ME/CFS has a 4.5% prevalence among those who did not recover from COVID-19, and forms the most severe subtype of Long Covid. Whilst not all Long Covid patients will fulfil the criteria for ME/CFS, the ability to study the conditions in parallel and at the point at which they cross over is bringing us unprecedented insights into long term energy-limiting conditions.
In this week’s interview Dr Vernon highlights the challenges in identifying definitive biomarkers for ME/CFS due to its heterogeneity and the fact that there are multiple triggers, but explains how the longitudinal data gathered in the RECOVER study is making roads into understanding the pathogenesis and necessary treatments for ME/CFS. This is due to one crucial factor: here we are presented with a huge group of ME/CFS patients who have developed the illness from one trigger, SARS-COV2.
Whilst the findings are shocking, and the stark quantity of people with ME/CFS is rising dramatically, Dr Vernon is positive about the way in which we can optimize this moment in time, with the research attention and funding in place, to reveal what is causing ME/CFS and then go on to work out how it can be treated.
Dr Vernon has more than 30 years’ experience in researching chronic illnesses, authoring hundreds of papers on the subject, working with the government and non-profits to move the needle in this research arena. She is dedicated to understanding what drives conditions such as ME/CFS, whilst advocating for greater involvement amongst the scientific and medical communities. Formerly the Scientific Director at Solve ME/CFS Initiative, Dr Vernon is tireless in her bid to advance research, educate and improve care for those impacted by ME/CFS.
Additional references from the episode:
JAMA paper detailing clusters in Long Covid