1997 – Both the CFIDS Association and CFS-News.org conducted surveys to determine patients’ feelings about the name-change question. In both surveys an overwhelming majority of patients wanted a name change. Most seem to prefer either myalgic encephalomyelitis or myalgic encephalopathy, both of which use the acronym ME.
1999 – A study at DePaul University suggested “that medical trainees perceive the ME label as being indicative of a more chronic and debilitating illness as compared to the labels of CFS or FN.” In the study, medical trainees were presented with identical case studies of patients with classic CFS symptoms. They were told the patient had myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), or Florence Nightingale disease (FN). Trainees who received the cases labeled CFS were less likely to assign a medical cause and more likely to prescribe psychotherapy and/or psychotropic drugs. Of trainees who were told the patient had FN or CFS, more than 40 percent believed the patient was likely to get better. Of those who were told the patient had ME, only 16 percent thought the patient would improve.
2000 – The CDC convened a case-definition workshop commissioned with exploring the challenges of studying and defining CFS. The CFSCC formed a name-change workgroup who began to identify possible alternative names.
2001 – The CFSCC established a workgroup to study the CFS name-change issues but it was dissolved prior to submitting its recommendations.
2003 – Although the CFSCC was dissolved, the written recommendations of its 2001 name-change workgroup were submitted to the new Chronic Fatigue Syndrome Advisory Committee (CFSAC). They recommended a new umbrella term, ‘neuroendocrineimmune dysfunction syndrome’ (NDS) along with suggestions for sub-groups for the illness. In December, the CFSAC issued their “Position Statement Concerning the Name Change Proposal.” The first four points detailed their agreement that the name ‘chronic fatigue syndrome’ is a poor and inappropriate choice. However, their fifth point concluded that this was not the appropriate time to change the name and was followed by seven reasons for this decision.
