IOM Clinician's Guide: Pretty sure 84% was Wichita and 91% was one or more Jason studies. No citations in that one. Checking the big doc... Jason, L., S. Torres-Harding, and M. Njok. 2006b. The face of CFS in the U.S. CFIDS Chronicle 16-21. http://www.researchgate.net/profile...in_the_U.S/links/00b7d51acf6823bccb000000.pdf (accessed March 3, 2015). Solomon, L., and W. C. Reeves. 2004. Factors influencing the diagnosis of chronic fatigue syndrome. Archives of Internal Medicine 164(20):2241-2245.
wow, that's really oudated. Do we not have better/newer prevalence studies? ETA: The Chronicle publication is a review of some earlier publications, including Chicago, Wichita, and Fresno.
Thank you @WillowJ that helps a lot. i am assisting a med student in understanding the landscape of ME
These might be of use? https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6331450/ https://www.frontiersin.org/articles/10.3389/fped.2019.00131/full
What I have never been clear about is whether this statistic refers to people who have clear PEM with distressing symptoms but cannot be taken seriously by a doctor or if it is people who experience fatigue but do not realise it is a disease not just the result of social factors (like an athlete doing too much training for instance or someone who has to work 2 jobs). Or do they mean many people are MISdiagnosed? I ask this because one of the Reeves studies found people to have CFS when they did not realise they were ill. I find it difficult to believe that 90% of people with ME are undiagnosed with anything. Remember that 25% are house or bedbound. Or do they mean that the mildest cases are not being diagnosed until they become more severe? I believe it is a problem but it is a simple phrase with a complicated meaning.
Based on my experience of gradual onset I can understand how someone with relatively mild ME goes undiagnosed for many years. I think symptoms will be attributed to other things if you get flu type symptoms it will be having viral infections more than average. People will push through. If the symptoms get worse maybe they do then get diagnosed with something else depression or anxiety. Probably get prescribed painkillers for the symptoms. Maybe some self medicate on drink or drugs and the ME gets masked by that being seen as the problem. I had a couple of close relatives in previous generations who used to have to rest during the day time - one used to have to sleep for an hour on coming in from work throughout their adult life. I didn’t see that in other family members. That person later on had complex health problems and maybe I’m rewriting history but I think there’s a slight possibility that person had mild ME.
