The media coverage for the Millions Missing protest to raise awareness of ME in Scotland is to be welcomed and will hopefully lead to a much-needed conversation around this often misunderstood condition.
The debate around the illness once known as ‘yuppie flu’ in the 1980s because sufferers tended to be professional people between 20 and 40 contributed to the slew of negativity that proceeded to shape debate for decades – based on nothing more than ignorance. Outbreaks of a previously unknown illness were recorded as far back as the 1930s and the term myalgic encephalomyelitis was first used after a comparable outbreak at the Royal Free Hospital in London in the 1950s.
ME is a systemic neuro-immune disease with debilitating and often disabling symptoms leaving the patient with an inability to carry out everyday activities becasue of, among many other symptoms, profound fatigue.
Shamefully people with the condition, which affects more women than men, have been treated terribly for years.
The image of a stereotypical ME sufferer has been allowed to form – white, middle-class, educated, a bit sensitive, probably a woman, who thinks they’re ill but ‘it’s all in their head’; someone who listens to fey indie bands like Belle and Sebastian whose lead singer Stuart Murdoch has ME and has spoken out powerfully in support of the Millions Missing worldwide protest.
A generation of working-class Scots first became aware of ME when Celtic and Scotland footballer Davie Provan was struck down with the condition also known as Chronic Fatigue Syndrome (CFS) and had to pack the game in at the tender age of 29.
Here was a footballer who thrived in the macho atmosphere of Old Firm games and scored a free-kick in the 1985 Scottish Cup Final - only to be struck down in his prime by a ‘mystery’ illness that involved sleeping a lot. He didn’t fit the emerging stereotype but was widely ridiculed anyway.
Having covered the issue this week, I’ve been humbled by two things – the level of knowledge people with ME have about their condition and how it comes to encompass their lives.
No-one chooses to have ME. You don’t suddenly decide to drop out of your first year at St Andrews University, having been a fit and active 19-year-old in the case of Emma Shorter, because you’re ‘faking it’.
The Millions Missing live with a constant search for answers from a medical profession who more often than not can’t give them what they want – because they haven’t been trained to. For way too long, people with the condition have been dismissed by doctors for being nothing more than unwell. Trials using cognitive behaviour therapy have sought to prove that the condition is a psychosomatic affliction and it hasn’t taken long for the savvy ME community to rubbish them.
I’ve heard horror stories of ME patients being told their symptoms must be a “manifestation of some forgotten childhood trauma” while being told to exercise more when they can’t raise their hand to grab a glass of water. The level of stigma that surrounds the condition has led human rights activist Peter Tatchell to draw parallels between the treatment of those with ME and the reaction he and other LGBT activists faced when trying to get research and treatment for HIV/AIDS in the late 80s.
All of this has to stop. Medical students need to be taught about ME, the Scottish Government have to provide funding and the inhumane stigmatisation of ME sufferers has to be challenged.