August Profile Survey Yields Record Response

In February, the Association launched a series of online surveys, asking CFIDSLink and SolveCFS readers about a range of topics. The August Profile Survey sought information about the every day lives of respondents. Here is a summary of what we learned about the group of 1,784 people who participated.

• 86.4% have CFS and have been diagnosed by a medical professional; 4.2% are family members, close friends or caregivers of persons with CFS.
• Only 4.4% have been ill less than two years; 62.1% have been ill for more than 10 years.
• Most (74.2%) are age 45 or older; only 2.3% are under age 25.
• 85.9% are women.
• 24.6% live alone; 70% live with a spouse; 25% live with school-age children, adult children or parents (with or without a spouse).
• 60.3% can count on at least one person in their household for emotional support.
• 63.3% are fully or partially disabled or retired from work.
• 25.8% of respondents work in a position that reflects their training and education, but only about half of these people work full-time in that position.
• 17.3% report that they work full-time, but one-third of these people are not working in their chosen field.
• 60.1% must rely on another individual for at least partial basic financial support; most of these people (78%) rely on their spouse or significant other; parents provide financial support to 17% of those who need financial help.
• 47.7% of participants receive some form of disability benefits (public, private or both); only 5.5% had applied for benefits but were denied coverage.
• 47.1% are covered by employer-provided health insurance (through their own employment or their spouse’s); one-third have coverage through disability or retirement benefits (largely government-provided Medicare and Medicaid programs). 9.5% have no medical insurance coverage.
• Nearly all (98.2%) respondents had consulted an internal medicine or family physician at some time during their illness; 83% had seen one during the last year.
• 62% had seen an alternative practitioner (e.g., acupuncturist, herbalist, etc.) at some time. 29.6% had seen one in the past twelve months.
• 65% had sought counseling help at some time; about one-third received counseling in the last year.
• 61.5% averaged 1-3 health-related appointments per month; 14% received no care at all.
• 74% spent $1-500 per month on health-related care and treatments; 12.9% have no out-of-pocket expenses and the rest (13.1%) spend more than $500 per month.
• 86.8% drive regularly or occasionally; about 10% reported not driving or only driving in emergency conditions due to health conditions.
• 89.5% considered themselves, at some point in their lives, to be “high achievers.” 57.1% replied “yes” to the question asking whether they thought their answer to the question about being a high achiever had an effect on the condition of their health today. (61% of those who answered yes to the first question answered yes to the second one.) There were many fill-in answers that ranged from being insulted by the question to expressing firm belief that they pushed too hard in the early phases of illness and thus beyond their body’s chance to heal and recover. Others also noted that “high achievers” would push harder for diagnosis and to stay informed, skewing results. This pair of questions will be more fully explored in future issues.
• 55.7% considered themselves to be better informed than others who share an interest in CFS; 13.9% didn’t know anyone who shared their interest.
• Very few respondents participate in local support group meetings, regional organizations or telephone support groups (6.9%, 4,6% and 4.2%, respectively); 27% reported at least monthly interaction with an online support group or listserv and 24% said they are active at least monthly with a CFS-related group on Facebook. 47.3% indicated at least monthly engagement with the CFIDS Association of America.

The last four questions requested brief answers (of up to 100 characters) about what the respondent most wanted family/friends, the general public and health care professionals to understand about CFS. Read the CEO’s message this month to get the “top 10” answers given to the question about family and friends. These types of answers take longer to compile, so we’ll bring you more results in upcoming publications. Responses to the last question, “What would you do tomorrow if you were completely well?,” were so moving that we’ll be sharing them with you in more memorable ways over the coming weeks. Watch your inbox for news and thank you for participating in these surveys!

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