Shadow People

ME/CFS has been called the invisible disease. Those of us who are less ill are not visibly sick. Those of us who are very ill are so sick nobody ever sees us in the street. We are pale shadows of who we should have been, pale citizens of pale societies.

I look at these people and what they are capable of doing as just pale shadows, and I see the world that should have been. Normally I write mainly from my mind, for once I want to write mainly from my feelings.

So many of us are overachievers, the kind of people who can rise to greatness. This illness punishes those who push themselves to achieve, diminishing our capacity. We try and try again, pushing ourselves and thereby crashing our health, until we are so weak we cannot push any more.

Some of us are community leaders. If we were not so ill we should be exceptional mayors and senators, exceptional candidates for president and prime minister. We should be leading our communities and countries to a better future.

Some of us are fantastic communicators, we should be exceptional journalists and writers, newspaper editors and educators. We should be informing the people, teaching the people of tomorrow's world that there are better ways to think about things.

Some of us have enquiring minds. We should be scientists and engineers, doctors and detectives. We should be the people who are out there discovering paths to a greater future.

Some of us are remarkable human beings. We should be the kind of citizens who would be welcomed as friend or neighbour. We should be the parents of the children of tomorrow, teaching and guiding them to a better future.

This illness is costing society way more than mere dollars, but lets look at money too. Look up the population of your country. Divide that by 250, prevalence of ME/CFS I use, and then multiply by $20,000, the conservative cost of ME/CFS. That is a very conservative estimate of the money lost from our economy, every year this disease goes untreated. In Australia that is $1,760,000,000 per year, every year, lost. One recent estimate put the actual cost in Australia at three billion. Why are we happy to lose that from our economy?

In the near future I will be once again calculating the cost to fix this problem. With current limited options, it is staggering - it rivals the cost of any other challenge in the world today. Only money invested into research can change that. When will we realize the only way to contain the eventual cost is to fund good science?

Cort Johnson of Phoenix Rising has pointed out that diseases that cost society far less receives orders of magnitude more funding. How is this a rational response from society?

We are shadow people living in a pale society. When will society join with us and step into the light?

Alex Young

PS Since I wrote this but before I posted it, Jody Smith has written a great article on the heroic sick, that i highly recommend:,0

As I am reviewing this blog today on May 12th the Vulnerable Manifesto came to my attention. It has some similar themes:


That is a great post you put together there Alex. I do really hope you managed to get that out to some people in high places.
"diseases that cost society far less receives orders of magnitude more funding. How is this a rational response from society?"
Simple. We have neither the energy to complain nor the images to shock.
Great post!

No one cares about us because we still look fine to most people. They don't realize we are paler, in many instances our weight has changed drastically either up or down. If you really look at us you do see changes, but the average person doesn't. And since there's never been a blood test and the disease was given a horrible demeaning name, no one wants to think about it. I still think the name damages us beyond all else.
I don't believe that overachievers are more likely to have CFS. It is simply that those with overachieving personalities are more likely to create awareness.
Written beautifully, we are great people... We are over achievers most of us.... I know I am.... We're workers. We are hidden in this pale shadow it truly is a tragedy.

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