To Whom It May Concern
WHY Reinvent the Wheel?
This year in June, the National ME/FM Action Network is in existence 25 years. When the Network surveyed medical professionals as to what they felt was the most important for diagnosing ME, and the response was unanimous that a working case definition was necessary. It became the Network’s goal to make it happen.
In 2003 the National ME/FM Action Network spearheaded the Clinical Working Case Definition of ME/CFS and one for FM. which became world-wide known as The Canadian Definition. Its Overviews summary was translated in five languages, English, French, Spanish, Italian, Dutch and now in Japanese by other countries.
As the U.S. Centers for Disease Control & Prevention’s (CDC) definition was primarily to standardize research, it was felt it would not be appropriate for clinical diagnoses. The Consensus Panel’s extensive clinical experience for diagnosing and/or treating ME/CFS patients was more than 20,000. Of particular note is the inclusion of PEM (Post-Exertional Malaise and neurological/cognitive manifestations.
On July 20, 2011 the Journal of Internal Medicine published Myalgic encephalomyelitis: International Consensus Criteria by: Carruthers etal
This Journal is an update to the 2003 ME definition which was used as a starting point. In this update, significant changes were made due to more scientific data as well as data supported by a study of more than 2500 patients that determined which symptoms had the greatest efficacy to identify patients with ME.
Please let us go forward by all being on the same page and agree on the ICC, ME International Consensus Criteria. Once a criteria is in use, doctors will be able to diagnose patients earlier and may even stop those ill from becoming severely ill. Whether it is ME or CFS becomes a non-issue as the criteria would determine that.
Myalgic encephalomyelitis: International Consensus Criteria
Wiley Online Library
Journal of Internal Medicine – Open Access
Canadian Clinical Definition for ME and/or FM
NATIONAL ME/FM ACTION NETWORK
Lydia E. Neilson, MSM