Illness progression in long-term ME/CFS

We asked detailed questions concerning how ME/CFS had progressed over time. Of the 67.1% of long-term subjects reporting significant relapses and remissions, 17.7% stated that overall illness severity was roughly constant, 27.4%  reported more severe illness over time, and 22% reported less severe illness over time.

The remaining 32.9% of the long-­term group classified their illness as not having significant relapses and remissions. Of this group, 19.1 % reported progressive worsening illness, 4.0% were progressively improving, and 9.8% reported roughly constant severity.

On the whole, long-term patients found ME/CFS to be severe. Another multiple choice question asked subjects to quantify their severity of illness over each 5-year period of their illness (years 0-5, years 5-10, etc.).

For each time segment up to 30, 52% of those responding claimed they had felt severely ill with ability to function at only 0-50% of ­normal during the period. After 30 years of illness duration, this rose to 61.5%.

As a mathematician, I had gotten very annoyed when attending American Association of Chronic Fatigue Syndrome (AACFS) conferences and seeing some speakers slapping a graph on the screen and claiming, "This is the typical course of illness." When I had spoken to them later, each admitted he had based the graph on "gut feeling", not data.

So in this study, I asked as the very last question (question #589) that the participant draw a rough graph of the progression of their illness. I had ended the graph at 40 years, but some participants extended that.

I had my Russian student from Rybinsk assign numerical y-values to various points and use linear interpolation, so I could recapture relative ups and downs in a database. I then used cluster analysis to look for patterns.

While I derived many patterns, it is pretty clear they are the results of this particular sample.

The most accurate statement that I can make is that "anything goes", including remissions of ten years or more followed by terrible crashes. So there is no "typical" course of illness.