This the first in a series of “innovation blogs” which focus on creative ways the chronic fatigue syndrome (ME) community is taking matters into its own hands, and producing projects that move this disease forward. The first blog focuses on a worldwide survey that was produced to provide some answers to a crucial question – how ME unfolds over time.

Some early survey results. The biggest subset of ME patients have experienced major fluctuations in their illness over time (thick blue line).


The disease course survey created by the Norwegian ME Association and the European ME Alliance includes questions on how long you’ve had ME, how long it took to get diagnosed, how your condition proceeded, how much healthcare, family, business support you’ve received, etc.

It’s a European survey with a twist – people in the U.S. and Canada and, in fact, anyone who speaks English (or another European language) can join in as well. (The survey is provided in 13 languages). By the time the survey is done, it’ll be possible to compare results across well over a dozen countries.

The survey is given in 13 languages

The survey will likely run through July. The goal is to get 10,000 responses.  I just took the survey from the U.S. It took about five minutes.

The survey results will be used to better understand ME and to support advocacy efforts. This is an easy way to participate in the worldwide movement to move ME forward.

Please Take the Survey Here


  • Next Up in the Innovation Series – ME Action Goes on a Chronic Illness Adventure






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