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Chronic Fatigue Syndrome’ Challenged

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A grass roots effort to change the name ‘chronic fatigue syndrome’ is gaining momentum, giving patients the opportunity to vote on a new name.

Just about everybody knows that the name ‘chronic fatigue syndrome’ trivializes the seriousness of the disease. It is a bad name that has lasted too long and robbed us of our dignity, inch by inch, one day at a time. The name makes light of our suffering and is hurtful to patients everywhere.

One of our readers who has a way with words said that calling the disease chronic fatigue syndrome is like calling Parkinson’s disease “chronic shakiness syndrome.” I could not have said it better.

An effort to change the name was launched in August 2006 with the introduction of Campaign for a Fair Name – the effort to replace chronic fatigue syndrome in the United States with a name that is respectable. The centerpost of the campaign was the January 2007 summit meeting of the Name Change Advisory Board – eight of the most published, quoted, and highly regarded CFS experts in the world. Collectively they have amassed over 150 years of CFS research and clinical experience.

The Advisory Board felt strongly that the name was inappropriate, and that a change was imperative. Their consensus recommendation was that the name be changed to ME-CFS, short for Myalgic Encephalopathy-Chronic Fatigue Syndrome.

It should be noted that ME-CFS represents a convenient catchphrase, describing both ‘Myalgic Encephalopathy’ and ‘Myalgic Encephalomyelitis’ – the name that CFS has been called in most of the world for close to 50 years. Either way, many believe ME-CFS is a win for everybody, and the reasoning seems sound to me.

In line with the Name Change Advisory Board, 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.

The next step is to learn the opinion of the most important experts – the patients, whose voices have yet to be heard. As a group, and with the backing of the Name Change Advisory Board and the IACFS/ME, we now find ourselves with the perfect opportunity to change the name.

A voting survey will be introduced within the next several weeks that will finally give patients the chance to choose the new name. This opinion poll will soon be available on ProHealth’s website, and on the websites of many other U.S.-based CFS and FM organizations.

This is our chance to be heard. We did not have this opportunity when the disease was named 19 years ago. But we do now. I encourage you to make your opinion known by voting in the upcoming name change opinion poll and to encourage other patients to do the same. You owe it to yourself, and you owe it to patients everywhere.

Sincerely,

Rich Carson

CFS patient

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