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Chronic fatigue syndrome name change web site launched

 

 

 

The Campaign for a Fair Name launches its own web site in the latest stage of the chronic fatigue syndrome name change effort.

The web site will now provide a central focus for the name change effort begun by ProHealth Inc (immunesupport.com) founder Rich Carson and an influential group of doctors and researchers.

The aim of the Campaign for a Fair Name is to have chronic fatigue syndrome renamed in the US to reflect the seriousness of the illness and help prevent many misconceptions that still exist.

In many countries such as the United Kingdom, Canada, and Australia and New Zealand, chronic fatigue syndrome has traditionally been called M.E. which stands for either 'Myalgic Encephalomyelitis' or 'Myalgic Encephalopathy'. Many feel that this name more accurately describes the illness as it classifies it as a neurological condition.

The term chronic fatigue syndrome (CFS), which was coined by the Centers for Disease Control and Prevention (CDC) and subsequently adopted throughout the medical community in the US, is seen by many patients (as well as their doctors and many researchers) as being demeaning. It suggests all there is to the condition is tiredness......which is a picture far from reality as any patient will tell you.

Such is American influence in the world that chronic fatigue syndrome has increasingly become the most common name for the illness in many countries, such as the UK, that have historically used M.E.

At the end of October last year the Name Change Advisory Board (NCAB) established by the campaign decided on the proposed new name. The board, which is comprised of eight of the most highly regarded CFS experts in the world, decided on the name 'ME/CFS'.

The board stated the following reasons for their proposed name:

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

Now the Campaign for a Fair Name has set up its own web site to carry the proposed name change forward. The site will allow patients and those close to them to have their say on the proposal in a number of ways, as well as providing a lot of background information about the campaign and the illness itself.

The site has forums where patients and anyone else concerned can discuss the proposed name and the name change effort.

A petition has been posted that anyone can sign which will be used as part of the campaign to have the new name officially recognised. The petition has 488 signatories at the time of writing, mostly comprised of patients and friends/relatives but also notable doctors and researchers. The final petition is sure to contain many many thousands of signatures.

In the month of May patients will have the opportunity to vote on the proposed name change. Votes can be cast at the campaign web site itself and at a number of other web sites which display the Campaign for a Fair Name Patient Vote logo:

Campaign for a Fair Name - Patient Vote May 2008

To get involved with this important campaign please visit the web site at www.aFairName.org


 

 

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