Myalgic encephalomyelitis (ME) was recognised as a neurological disease by the World Health Organization in 1969. However, in the 1970s some researchers labelled it as hysteria, leading to the US Centers for Disease Control to rename it as chronic fatigue syndrome (CFS). The name was changed to ME in 2015 to help legitimise the symptoms and experiences of patients. Still, the medical stigma persists. Conditions such as ME disproportionately affect women, whose symptoms and concerns are often ignored by doctors.
Many patients with Long Covid face similar challenges. Since 2020, an estimated 1.8 million people in the UK have developed Long Covid after a Covid-19 infection. The debilitating condition is known to cause more than 200 symptoms. Coincidentally, Long Covid shares many symptoms with ME/CFS, including chronic pain, exhaustion, brain fog and exercise intolerance.
Many patients with complex chronic illnesses are dismissed by doctors who don’t believe in their symptoms or disease even when it leaves patients bedridden. Now, people with complex illnesses such as ME and Long Covid are taking the hunt for treatments into their own hands