Campaigners have called on the Health Secretary to act to make more funding available for ME research.
Emma Shorter, who has the debilitating condition, sent a direct message to Shona Robison at a rally held outside Holyrood to highlight the 21,000 people affected in Scotland alone.
The Millions Missing event saw dozens of pairs of shoes laid outside the Parliament bearing the personal messages of those too ill to attend.
Organiser Ms Shorter was diagnosed with ME (myalgic encephalomyelitis) at the age of 19 while in her first year at St Andrews University.
Now 23, the formerly keen hillwalker and skier lives with her parents in Edinburgh, where she struggles with day-to day tasks and is unable to work or study.
The condition - sometimes known as chronic fatigue syndrome - has no known cure and can have a devastating impact on the lives of sufferers, with symptoms including exhaustion and fatigue, chronic pain, sleep disturbance, problems with memory or concentration and gastrointestinal difficulties.
It affects more people in Scotland than multiple sclerosis and Parkinson's combined, but is often misdiagnosed or dismissed as a psychological illness.
Explaining why she had organised the event, Ms Shorter said: "I am not going to spend the rest of my life being looked after by my parents because some sexist psychiatrist in the 70s decided that, as the majority of patients were women, it must be hysteria. And this is what has influenced medical opinion to this day.
"Now there is hope, now there are potential treatments, now we have world-class researchers looking into ME and they are really struggling to get funding."
Scotland's NHS currently only has one dedicated ME nurse and only four out of 14 health boards provide a specialist service to ME sufferers.
In a message to Ms Robison, she added: "I cannot believe that she thinks that 21,000 people in Scotland do not deserve proper care and treatment and I cannot believe that she is leaving it up to patients to sort it out for themselves.
"If she cares for the 21,000 people in Scotland, she will ring-fence funding into biomedical research into ME.
"There is no hospital consultant, there is no training for doctors and nurses and there is no care. And 21,000 people are desperate. A lot of people have said to me, 'look I really want to be valuable, I really want to work'. Give us the chance."
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