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

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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%

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* 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.)

** Totals differ slightly as not all respondents answered all questions

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