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Chronic Fatigue Syndrome name change plan moves forward




The CFS Name Change Advisory Board agrees to amend their earlier recommendations for a name to replace 'Chronic Fatigue Syndrome'.

The CFS Name Change Advisory Board (NCAB) has now put forward their proposal that chronic fatigue syndrome (CFS) should be known as ME/CFS in the United States. The 'ME' part of the acronym will now stand for both 'Myalgic Encephalopathy' and 'Myalgic Encephalomyelitis'.

There had been disagreement previously when the name Myalgic Encephalopathy/CFS was proposed as many patients preferred Myalgic Encephalomyelitis. With ME/CFS the issue of whether to use  Myalgic Encephalopathy or Myalgic Encephalomyelitis is avoided completely.

The NCAB was formed with the aid of patients and advocates including Rich Carson, founder of ProHealth Inc/ and the man behind the Campaign for a Fair Name, in order to address problems arising from the illness being known as CFS in the US. This name has been used for almost 20 years but many have felt it trivializes what is a very serious condition and prevents proper recognition by medical professionals, politicians, as well as the public.

The board feels that the term 'Chronic Fatigue Syndrome' has a negative effect on important issues such as diagnosis, patient care, and research funding. Despite research finding that CFS patients experience a level of disability on a par with that of people suffering from multiple sclerosis, AIDS, heart disease, and cancer patients undergoing chemotherapy, this fact is not often evident in how patients, and the disease, are treated.

The NCAB includes some of the most experienced and well known doctors and researchers who specialize in the treatment of CFS. They are likely to be recognizable to any CFS patient who has researched the condition.

NCAB members:

  • Dr. Lucinda Bateman
  • Dr. Paul Cheney
  • Dr. David Bell
  • Dr. Leonard Jason
  • Dr. Nancy Klimas
  • Dr. Anthony Komaroff
  • Dr. Charles Lapp
  • Dr. Daniel Peterson

CFS had been known as Myalgic Encephalomyelitis in many countries, including the UK, Australia, and Canada, for decades before the term 'chronic fatigue syndrome' was coined in the US. As a result of the influence that the US has in terms of factors such as the amount of research conducted, the name CFS has slowly started to replace ME in these countries as well. It is hoped this concerted effort to change the name to ME/CFS will serve to reinstate the more diagnostically accurate ME throughout the world.

The board agreed to retain CFS in the name for the time being as a way to preserve continuity in research, which currently refers to CFS almost entirely, as well as to make sure patients don't have problems with issues such as disability claims.

A number of influential groups have already forged ahead and changed their names to reflect what the CFS community clearly wants. The International Association for Chronic Fatigue Syndrome (IACFS), the largest organization of CFS researchers and doctors in the world, is now known as IACFS/ME.

Patients will be invited to have the last word on whether to go with ME/CFS in a vote scheduled for May 2008. Rich Carson has commented that patients did not have the chance to have their voices heard when CFS was adopted in 1988, so making sure thay they do this time around is of vital importance.

Also announced was the launch of the Campaign for a Fair Name website which will go live on January 1, 2008. The site will provide all the latest news and information about the name change effort and will promote the use of ME/CFS.

For further information regarding the name change effort please visit Rich and the team are inviting patients to get involved in making the name change happen for the benefit of everyone suffering from this devastating illness.



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