Keeping you up-to-date on recent
events across the nation and around the world
Name change explored
Patients, family members, clinicians and researchers
chronic fatigue and immune dysfunction syndrome (CFIDS) needs a new name. But there remains no consensus
about what that name should be, a working group assigned to address the issue recently reported.
The name change workgroup of the Department of Health and Human Services (DHHS) Chronic
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
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
The survey also found that:
- Twenty-five percent of PWCs described
themselves as "improving," while 14 percent said they were
One-third of people with CFIDS waited more
than 18 months for a formal diagnosis, while 30 percent were diagnosed within
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)
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
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.