29 December 2009

Starting from the beginning ... the name.

What is the name of this disease?

For the purposes of this blog, the Canadian Consensus Document: A Clinical Case Definition and Guidelines for Medical Practitioners will be referred to primarily. Other documentation and definitions will be used and referenced, however I strongly suggest downloading and reading a copy of the Canadian Consensus Document, reading it and sharing it with your family, friends and medical team. A PDF copy can be found here:

www.mefmaction.net/documents/me_overview.pdf

Chronic Fatigue Syndrome (CFS), is also known as Myalgic Encepalomyelitis (ME), or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). The Canadian Expert Consensus Panel, who developed the Clinical Case Definition and Guidelines for Medical Practitioners, refer to it as CFS/ME.

There are a number of other names which do get used, however, with varying degrees of accuracy, including Myalgic Encephalitis and Myalgic Encephalopathy.

There is currently a movement towards a name change for this disease, for a number of reasons. One being that people with a diagnosis of ME/CFS frequently report that they feel the 'fatigue' label is inaccurate or trivial. Fatigue is associated with many illnesses, and even healthy individuals experience fatigue at certain points in their lives. Furthermore, in ME/CFS, fatigue is only one of a number of symptoms, so 'Chronic Fatigue Syndrome' itself as a name poorly reflects the extent of this disease.

There is much more information available on this issue, I have listed some links below which may be of interest:

http://afairname.org/

http://www.cfs-news.org/namebkgd.htm

http://www.mefmaction.net/Patients/Articles/NameChange/RejectNameChange/tabid/710/Default.aspx

1 comment:

  1. Apologies for the grammatical mistakes/repititions.

    ReplyDelete