80% of cases are still undiagnosed... Reference?

[Kati]

hi I am looking for the scientific reference on 80%of the patients with ME/CFS are still undiagnosed. Anyone can help me?

 

[WillowJ]

yes, the CDC mentions 80% and Jason has one or more studies, one of which found 90%. Just a sec....

Ok, Reyes:
http://archinte.jamanetwork.com/article.aspx?articleid=215827

Only a fraction (7 [16]) were diagnosed as having CFS or were treated for CFS by a physician.

Pretty sure that's (raw number [percent]). And refers to before having enrolled in the study.

Jason 2009:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3021257/

Moreover, about 90% of people identified as having CFS in this sample had not been previously diagnosed by a physician prior to participation in the study.

 

[Kati]

yes, the CDC mentions 80% and Jason has one or more studies, one of which found 90%. Just a sec....

Ok, Reyes:
http://archinte.jamanetwork.com/article.aspx?articleid=215827

Pretty sure that's (raw number [percent]). And refers to before having enrolled in the study.

Jason 2009:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3021257/

Thank you @WillowJ this helps.

 

[Iquitos]

I could be wrong, haven't looked for it, but I seem to remember Dr. Klimas reporting that about 84% of ME/CFS sufferers have probably not been diagnosed.