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More participants still needed for Jason mortality survey - can you help?

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Jason's earlier study of mortality in CFS/ME said the following:
http://www.ncbi.nlm.nih.gov/pubmed/16844674

Abstract
Chronic fatigue syndrome (CFS) is a debilitating illness affecting thousands of individuals. At the present time, there are few studies that have investigated causes of death for those with this syndrome. The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS. There were approximately three times more women than men on the list. The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population. The implications of these findings are discussed.

Here's the full text of the study:
http://www.cfs-ireland.com/serious.pdf

Here's the memorial list he used:
http://www.ncf-net.org/memorial.htm

The recruitment letter posted in March 2014 said the following:

http://www.cortjohnson.org/blog/2014/03/10/chronic-fatigue-mortal

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. We understand that more than one person may occasionally report on the same individual who has passed away, and that is completely fine. 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.

The medical community and relevant government agencies need to be informed of the frequency and circumstances of deaths resulting from having ME and CFS. The purpose of this study is to document the severity and consequences of ME and CFS.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
@Snowdrop, I wouldn't assume that this research has taken money that would otherwise have been used for biomedical research. I don't know what its funding source is. But social science studies (which this could be considered to be) often draw from different funding streams than biomedical ones. I'd also expect a study like this to be pretty cheap.

So it's my assumption that this hasn't cost us any biomedical research: and, given that it's already funded and could help to stimulate a great deal of biomedical funding, I think we should support it. We certainly have nothing to lose by supporting it at this stage, and a great deal to gain.