Publish date July 27 2022
One of our amazing volunteers, Jenny, Dr Richard Schloeffel and CEO Anne Wilson were recently interviewed for the RMIT City Journal by Rebecca Kazmierczak. Jenny who was once an active swimmer, runner and bush walker, bravely explains how her life has deteriorated into a “lifelong lockdown”, where she is bedridden most days with the occasional fortnightly outing. “It completely dominates my life. I don’t really socialise often because it costs me 24-36 hours of pain in my brain and whole body,” Meagher said.
The article also explores how fraught getting a diagnosis of ME/CFS can be, with Associate Professor Mark Guthridge saying “Patients have long voiced their issues with not being recognised, not having a disorder, being dismissed, marginalised, and going through the revolving door of trying to get a diagnosis.”
As well as how underfunded research is into ME/CFS, explaining that ME/CFS is more prevalent than multiple sclerosis (MS), motor neurone disease (MND), and Parkinson’s disease (PD), yet only receives a fraction of the funding.
Emerge Australia’s medical director, Dr Richard Schloeffel OAM, says funding for research into ME/CFS is urgently needed so patients are managed safely. “Currently there is no known cure for ME/CFS. There is a vital need for information about how to accurately diagnose and manage patients to prevent the illness getting worse.”
The article ends with a call for new Clinical guidelines, the caution required around treating ME/CFS with graded exercise therapy (GET) and how rising Long Covid cases are shining a light on those with ME/CFS