Ellen Piro is the president of the Norwegian M.E. Association.

In 1995 she circulated a worldwide petition to get the CFS name changed and she personally brought it to the Dublin CFS conference to urge the scientists to make a change.

Recently Ellen has been involved in the investigation into the use of meningitis vaccines in Norway and New Zealand and which has ben connected with the cases of over 250 ME patients.

She has also contributed to the debate on the Norwegian equivalent of the NICE guidelines.