DePaul University’s Center for Community Research (under the leadership of Dr. Leonard Jason) is currently recruiting respondents for a study on myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) mortality. We are looking to recruit surviving family members, friends, and/or caregivers of individuals who had been diagnosed with ME or CFS and are now deceased.
Our intention is to document the experience of these deceased individuals, and the experience of their family and friends, to improve our knowledge of ME and CFS and to help those individuals who are currently suffering from the illness. There has been almost no research done on ME and CFS mortality in the U.S. or internationally since it is not generally recognized that people die as a direct result of having ME or CFS.
Did you know someone well who had this illness and passed away? Please consider completing our survey here: https://redcap.is.depaul.edu/surveys/?s=DHxuYxScEn
Contact Abby Brown for additional information by phone at 773-325-1164, via email at [email protected], or via Twitter @DePaul_MECFS.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the