ME/CFS Retrospective Mortality Study- Help Wanted

[Never Give Up]

Solve ME/CFS posted this on their Facebook page:




Solve MECFS Inititative
Yesterday at 11:22am ·
Do you know someone who had been diagnosed with ME/CFS and has since passed away?

Researchers at DePaul University are investigating issues related to ME and CFS mortality through an online survey. The results will be used to inform the medical community and relevant government
agencies about the frequency and circumstances of deaths resulting from or associated with ME/CFS.

For more information or to take part, go here: https://redcap.is.depaul.edu/surveys/?s=DHxuYxScEn

 

[mango]

Via The #MEAction Network:

The DePaul mortality survey has now had 58 participants. Can we find more people to take part in this important survey - please help. Did you know someone well who had ME or CFS who has passed away?
DePaul University is a respected well known place of research for ME/CFS in the USA. Dr Leonard Jason is also one of the most cited researchers in the recent Institute of Medicine report.
You don't have to be in the USA anyone can participate in this online survey.
Please share this post to group networks.

"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."

Source: http://www.meaction.net/2015/04/19/help-depaul-researchers-learn-more-about-me-related-mortality/

Direct link to the survey: https://redcap.is.depaul.edu/surveys/?s=DHxuYxScEn

 

[shannah]

I'll bet Rich Van K could have provided many names for this project.