The name change workgroup of the Department of Health and Human Services (DHHS) Chronic Fatigue Syndrome Coordinating Committee, which was appointed in summer 2000, recently solicited input on several alternatives. A questionnaire was distributed at

the American Association for Chronic Fatigue Syndrome (AACFS) meeting in January, and then to a broader audience through several Web sites and Internet listservs.

Support was almost evenly split between myalgic enceph-alopathy (ME), or some version of that name, and neuro-endocrine immune disorder (NEID). Fewer than 5% of survey respondents supported other names, such as polyalgic asthenia or Ramsay’s Disorder.

Most of the respondents appeared unwilling to compromise on the name. When those who picked either ME or NEID were asked if they would support another name, fewer than 30% said yes.

Based on input from the survey, the workgroup has concluded that the acronym NEID has too many negative connotations and should not be considered as a viable option. The workgroup will continue to search for alternatives to "NEID," and will solicit other information from stakeholders as it develops recommendations regarding the name change issue.

The subject will be discussed in detail at the next CFS Coordinating Committee meeting, which has yet to be scheduled. For details, visit the Patient Advocacy section of the Association’s Web site, www.cfids.org, often.

Survey: "Terrible struggle" for Brits with ME/CFIDS
A new British survey has found that nearly four out of five people with myalgic encephalomyelitis (ME)/CFIDS report feeling "severe" pain because of their illness.

The survey, conducted by the charitable group Action for ME, included responses from 2,338 people with ME/CFIDS. Action for ME says the mail-in survey was the largest CFIDS-related poll ever taken in the United Kingdom.

The survey also found that:

• Twenty-five percent of PWCs described themselves as "improving," while 14 percent said they were "deteriorating";
• One-third of people with CFIDS waited more than 18 months for a formal diagnosis, while 30 percent were diagnosed within six months;
• Sixty-four percent of respondents were receiving state benefits;
• Nearly two in three people received no advice from their doctor about how to manage their illness.

Action for ME said that the report "typifies the terrible struggle that many (CFIDS) sufferers have to endure just to get the most basic level of care and support." The group called for better training of doctors and other health-care professionals, and more community-based aid for those unable to travel for medical care.

Korean court approves CFIDS claim
A South Korean court has ruled that chronic fatigue and immune dysfunction syndrome (CFIDS) should be treated as a work-related illness.

The Korea Herald reports that the court found in favor of a 45-year-old cab driver who sued for government financial aid after developing CFIDS in late 1999. The man began showing symptoms of the illness after being involved in a traffic accident. Korea’s Labor Welfare Corporation had denied the man benefits, saying that the job stress he felt after the accident did not cause him to develop CFIDS.