A Profile of ME/CFS Patients - How Many Years and How Many Doctors?

A Profile of ME/CFS Patients - How Many Years and How Many Doctors?

May 16, 2008

Results of an ME/CFS Patient Survey

Recently, more than 1,200 patients diagnosed with ME or ‘Chronic Fatigue Syndrome’ took a survey posted in ProHealth’s ME/CFS newsletter. The following results – statistics on patient age, length of illness, and years/number of doctors required to receive a diagnosis - may contribute to a sharper picture of the ME/CFS community and their challenges.

ProHealth ran this survey at the suggestion of Encounters with the Invisible author Dorothy Wall and ME/CFS doctor Lily Chu, MD, MPH. Wall and Chu are researching information for a public education article on ME/CFS, and have found that answers to these types of questions are not easily available in the research literature. We also recognize that this group of diagnosed patients is a minority - since as reckoned by researchers at the CDC and DePaul University, about five of every six ME/CFS sufferers in the U.S. are still undiagnosed.* ME/CFS Public Education Survey Questions

1. How old are you?
The majority (76%) are between ages 30 and 60

Under 20....17.....1%
20-29........76......8%
30-39.......189....16%
40-49.......329....27%
50-59.......401....33%
60-69.......173....14%
70-older.....34......3%
____________________
Total.......1219....100%**

2. How long have you been ill with ME/CFS?
One in three have been ill for more than 15 years, and one in five for more than 20

Under 1 year.....15.....1%
1-5 years........258....21%
6-10 years......318....26%
11-15 years....211....17%
16-20 years....188....15%
20+ years.......227....19%
_______________________
Total.............1217...100%

3. How long did it take you to be diagnosed with ME/CFS by a healthcare provider?
29% had been ill from 6 to 20-plus years before being diagnosed.

Under 1 year....275....23%
1-5 years.........579....78%
6-10 years.......171....14%
11-15 years.......80......7%
16-20 years.......53......4%
20+ years..........52......4%
________________________
Total..............1210....100%

4. How many healthcare providers did you see before you were diagnosed?
44% saw from 5 to more than 20 doctors before being diagnosed

1-4 doctors........679....58%
5-9 doctors........336....28%
10-15 doctors.....110.....9%
16-20 doctors.......34.....3%
More than 20........53.....4%
_________________________
Total.................1212....100%

___
* Researchers at the CDC and DePaul University put the number of Americans with ME/CFS at about 900,000 - and estimate that between 80% and 90% of them are undiagnosed and not receiving proper medical care. (See "The Face of CFS in the U.S." by Dr. Leonard Jason, et al.)