While they'd like to see a name that reflects the severity of the condition, since no one really understands the causes and mechanisms behind chronic fatigue syndrome, it's been difficult to come up with a name that's accurate and universally accepted.
The name CFIDS, which stands for "Chronic Fatigue and Immune Dysfunction Syndrome," became common several years ago, as patients and advocates tried to make the name of the condition more reflective of what's going on in the body. However, while research has identified some immune system irregularities, findings are inconsistent and we don't have solid evidence that it's a major cause of symptoms.
ME/CFS (sometimes CFS/ME) is now becoming popular. In many countries, the condition is called myalgic encephalomyelitis, which some researchers, patients and advocates believe is more diagnostically correct. In the United States, there has been considerable controversy over whether encephalomyelitis or encephalopathy is more accurate, so the compromise is to use just ME. Advocacy groups want to transition from CFS to ME by re-educating the public and medical community. Their plan is to first use ME/CFS and then later drop CFS altogether. (See Myalgic Encephalomyelitis/Encephalopathy for an explanation of what they mean medically.)
Complicating the debate, critics of the current name-change effort point out that we don't have enough evidence to prove that encephalomyelitis or encephalopathy are significantly involved in chronic fatigue syndrome. Many people have recommended holding off on a name changed until the mechanisms behind the condition are better understood.
Other Chronic Fatigue Syndrom FAQs