My first encounter with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), was through my flat mate when I moved to London in 2015.
Having worked in the biomedical field for 15+ years, I had not heard about the disease before meeting Sarah (not her real name), then in her late 40s. I could not help myself but raise a doubtful brow when she first told me about her decade-long struggle with both, the disease, and the medical care (or lack thereof). The combination of symptoms, from outright exhaustion and brain fog to intricate food-intolerances seemed bewildering and skittish to me. However, witnessing one of Sarah's relapse crises, made my scepticism vanish promptly. In fact, seeing her collapse and shake, then recover her senses slowly but not being able to stand or walk by herself for hours, was scary, to say the least.
Indeed, the clinical understanding of ME/CFS is vast and at times confusing, as symptoms and disease progression vary greatly between patients. Profound fatigue and inability to cope with physical and/or mental effort are at its core. Chronic pain, recurrent infections, low mood, and cognitive impairment are also common. The causes behind the illness are equally mysterious, although a previous episode of viral or bacterial infection has been linked to at least a subset of cases. Not surprisingly, there are parallels to be drawn between ME/CFS and the emerging picture of long COVID, as they share several key symptoms.
Not only is ME/CFS a devastating disease, but patients are left painfully alone with it.
The Genetics Podcast, hosted by Dr Patrick Short, brings this message across with power and dignity. This episode has the format of a round-table with three founding members of DecodeME, a project led by Professor Chris Ponting from the University of Edinburgh. Professor Ponting's team has secured funding for the first large scale genome-wide association study (GWAS) into ME/CFS and recruited 25,000 participants to identify gene-variants linked to the disease. Sonya Chowdhury, CEO of Action for ME, and Andy Devereux-Cooke, co-founder of the Science for ME forum were the other guests from the DecodeME project.
