I’ve struggled with ME for 25 years, with symptoms which include immune irregularities, physical weakness, post-exertional fatigue, cognitive dysfunctions, memory loss and orthostatic intolerance.
Physical, mental or psychological stressors can severely exacerbate these symptoms.
I have difficulty standing or sitting upright for more than 20 minutes or so and need extreme sensory isolation to recover. That means no noise, light or temperature extremes.
It’s a common enough story.
I was fortunate enough to complete university and I had a promising career in marketing when I got sick. A few years later I kickstarted another career in publishing, working from home. And when that became too much, I ended up working a few hours a week as a dishy in a restaurant.
Before coming down with ME I was socially and physically active – I ran ten kilometers a week and swam five.
Then in 1990 I contracted a fever-like illness and never recovered.
Although ME is common, it is diagnosed somewhat vaguely as a checklist of symptoms, so that it has become little more than a waste-basket diagnosis for chronic illness. Treatment, even of individual symptoms, is almost non-existent.
Research into ME is poorly funded and obfuscated by commercial interests. Public perceptions of the illness are ill-informed and mainly negative, even within the medical community, so that sufferers must deal with institutionalized ridicule and abuse, in addition to their illness.
Call it a form of self-therapy, but I began this blog with the hope of challenging those poor perceptions and, perhaps, along the way helping others still coming to terms with their illness.