First Survey Generates Reader Profile

In our February edition we announced a series of short surveys to learn more about our readers and how they use information published in CFIDSLink. Here is a summary of what we learned from the 660 readers who responded.

• The majority (74%) of respondents have been reading CFIDSLink for two or more years.
• 40% reported that they “always read it and open at least one story.” Another 30% indicated that they “always open it and skim the message.” Only two people who responded don’t open the Link when it comes to their inbox each month.
• The five topics of greatest interest to those who responded are:
1. Articles about CFS treatment (average score 3.91/4.00)
2. Research stories about topics being studied in CFS (3.76)
3. Research summaries from the published literature (3.70)
4. Media reports on CFS (3.31)
5. Personal stories from CFS patients and caregivers (3.28)
• Reports on CFS-related meetings with policymakers received the lowest rating 2.94), but only 5% indicated that they “did not wish to read” stories on this topic.
• The CFIDS Chronicle was the top-ranked source of other information about CFS consulted by survey respondents, with 70% indicating that they read/receive it.
• Most of those who responded were not using social media sites. Of the 37% who were connecting using these tools, Facebook was the clear favorite with YouTube coming in second. Less than half, 35%, would like the Association to have a presence in these online networks.
• 60% of the respondents receive 1-5 e-newsletters each month.
• In meeting respondents’ needs to stay in touch with the Association and the CFS community, 36% said the Link met that need “very well” and another 41% indicated the Link was “good enough.”
• In general, survey results indicate that the monthly Link is about right in terms of its frequency, length and content. 66% let us know that they “learn something new nearly every time”they read it.

We recognize that the respondents to this survey are a self-selected group, biased toward those who value CFIDSLink and support the Association. Statistically speaking, Association members are overrepresented in the survey results, compared to the proportion of Link recipients who are also Association members. But these results, combined with other data we compile monthly, are meaningful tools as we work to continuously improve our communications.

In response to survey participants’ requests and others who have expressed their interest in seeing the Association represented on Facebook, The CFIDS Association of America now has a Facebook page and a Facebook cause, SolveCFS. Explore the photo albums and notes for information about CFS, the Association's work and its leaders. Keep up with news between issues of CFIDSLink and the Chronicle. Make connections with others interested in making CFS history. Share information and recruit your friends to the effort to conquer CFS.

We look forward to hearing from an even larger number of Link recipients with our March survey. If you haven’t done so already, please complete it now!

____________________________________________________________________________

CFIDSLink is offered free-of-charge to anyone who requests it. Please help us continue being able to provide this service. Donate now.