The Five Percent

There is a number that comes up again and again in conversations about ME/CFS. Five percent. The estimated chance of fully recovering from the illness.

At first glance, it sounds like hope. Like a small light at the end of a very long tunnel. But the longer you live with ME/CFS, the more the meaning of that number changes.

One question I am often asked is: Do you think you are part of those five percent? My honest answer is: No.

Not because I have given up, but because I have learned to be realistic. After years of living with ME/CFS, after countless adjustments, setbacks, and attempts to stabilize, a full recovery is no longer a realistic goal for me. What remains is the hope for stability, for small improvements, for a life that is possible within very narrow limits.

For people looking at ME/CFS from the outside, five percent can sound like something to hold on to. For those who are severely or very severely affected, it often does not feel like hope at all. Knowing that the likelihood of ever returning to a self determined life is so small can be overwhelming.

Especially for people who have been ill for many years, who are housebound or bedbound, who can barely tolerate light, sound, or human interaction, five percent offers very little comfort. When nothing improves over years or even decades, when medical support is insufficient or absent, statistics lose their reassuring power.

In this context, some people with severe ME/CFS, after long and careful consideration, choose assisted dying in countries where it is legally available. Not as an impulsive decision, but as a last way to escape a level of suffering that has become constant and unbearable, with no realistic prospect of relief. This choice is not a sign of weakness. It reflects the extreme circumstances these individuals are living in.

Talking about this is uncomfortable. But it is necessary. Because the existence of such decisions highlights how profoundly inadequate our response to ME/CFS still is. The lack of research, the lack of effective treatments, and the lack of meaningful support leave many people isolated and without real options.

The five percent must not be used as reassurance. They must not distract from the reality that ninety five percent of people with ME/CFS continue to live with a disease for which there is still no effective therapy. Hope cannot be just a statistic. It has to show up in research, healthcare, recognition, and real support.

Until that happens, five percent will remain, for many, not a source of hope, but a painful reminder of how little chance for change there truly is.