Campaign For A Fair Name: Our Cause

In August, 2006, we launched a serious effort to bring more validity to CFS, to give it a name that more closely reflects the severity of the condition. Toward this end, eight of the most highly regarded CFS experts in the world came together and formed a Name Change Advisory Board (NCAB). In January, 2007, they discussed recommendations for this new name, finally deciding on ME/CFS. Their reasons?

ME/CFS is medically and diagnostically correct, reflecting the science of this illness, giving it the credibility it deserves.
Used as an umbrella term, ME/CFS will satisfy those who wish to use Myalgic Encephalopathy, and those who prefer Myalgic Encephalomyelitis.
ME/CFS maintains "CFS," avoiding problems with insurance or disability claims.

Once the board established a name to be put forth, the Fair Name Implementation Committee (FNIC) was founded to carry the work forward. This includes a grassroots movement to educate folks about the need for the change and how such a change will be implemented within the research, medical and patient communities. You can learn more about this committee and our board members by clicking here.

The term chronic fatigue syndrome trivializes the seriousness of the disease and damages patients every minute of every day. Imagine calling Parkinson's disease chronic shakiness disease! Or calling Alzheimer's chronic forgetfulness disease! It would be reprehensible.

What's more, while physicians equate the CFS experience with that of a cancer patient undergoing chemotherapy, few patients receive adequate medical care. The severity of CFS is as significant as that experienced with other serious illnesses, such as multiple sclerosis, COPD, end-stage AIDS, and kidney failure; yet CFS consistently receives among the lowest in federal dollars for research.

Finally, in countries around the world, including Canada, CFS is known either as ME/CFS or simply ME. And the International Association for Chronic Fatigue Syndrome - or IACFS - voted to change their name to the IACFS/ME. This is the largest organization of CFS researchers and clinicians in the world. It’s time we followed suit.

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