“And the survey says…”

For each month since February, the Association has conducted a one-month online survey to learn more about CFIDSLink readers and how they use the information in our free monthly e-newsletter. Summaries of the February and March surveys helped us understand more about your preferences in general and what you want to read about on the topics of research and treatment. Results of the last survey, reported here, gathered from 674 readers their interests in stories about recovery, coping and personal experiences with CFS.

• Similar to last month, fewer than half, 43%, of the April survey respondents had also completed the March survey, but 87% reported reading CFIDSLink regularly. 32% had also completed the February survey.
• One-third (33%) are active on Facebook and a quarter (25%) had become “fans” of the Association’s new Facebook page. The surveys responses from those who were and those who were not active on Facebook did not differ much.
• There are a growing number of CFS weblogs (blogs), and blogs for just about any topic you can imagine. According to our survey participants, 19% regularly read blogs about interests other than CFS and 17% read CFS (or other illness-related) blogs. 44% said they would be interested in a CFIDS Association blog. 21% had no interest in blogs of any kind and 8% didn’t know what a blog is.
• The patient stories of highest interest are those that offer tips for recovery (84%) with stories offering tips for coping a close second at 79%. Recovery stories ranked highly too, with 66% indicating “high interest” and another 26% marking “mild interest.” Stories about patients with severe bedbound illness received low interest marks. Memorials and stories about patients who have died received the lowest marks of all, with 23% indicating that they are not usually interested, an additional 19% reporting that they do not care to read and 4% telling us they would strongly object to seeing these kinds of stories in our publications.
• Stories about “regular folk” with CFS were of interest to a total of 90% of survey participants. In reading their stories, journalistic style was demanded by only 15% of readers. 45% indicated that the quality should be high, but mistakes were better tolerated. 24% said they’d prefer to read the writer’s own words and didn’t care about editing and grammar.
• Nearly all (95%) of the respondents said that they read coping and self-care stories for themselves; 42% share these kinds of stories with family members and 30% share them with a physician.
• The coping/self-care topics of greatest interest (in order) are:
  1. strategies for energy conservation (rating of 1.3 out of 5.0)
  2. reviews of other information sources (1.5/5.0, with one being highest interest and 5 being lowest interest)
  3. healthcare advocacy (1.7/5.0)
  4. obtaining emotional support (1.7/5.0)
  5. low-energy entertainment options (1.8/5.0)
  6. assistive devices (2.0/5.0)
It was interesting to note that fill-in answers to this question from several hundred people were statements that research/treatment stories are their highest interest. The March survey was dedicated to this topic, so we did not ask again, but readers reinforced their real preference even in this survey.
• We asked participants to RANK their choices for whose opinions matter most on topics related to coping and self-care. Many didn’t like the format of this question as it forced them to choose one source over another (rather than rating them all highly). Here’s the way the ranking came out:
1. Expert CFS professionals
2. Individual patients who have used the approach
3. Peer-reviewed literature
4. Health care professionals from any discipline
5. Mental health/behavioral health professionals
• More than three-quarters, 78%, indicated that they would be willing to share their experiences with other readers; one-third of these people would do so only if they could remain anonymous.
• To gauge how widely CFIDSLink is distributed beyond our mailing list, we asked how many readers forward the Link to others. 70% do not; the rest forward it to family members, friends, and/or one or more health care professional.
• Nearly all (97%) readers had visited the Association’s web site, with most (81%) indicating that they were looking for information about a specific topic. General information was the next most popular answer, with 71% indicating they had visited the web site for that reason. We received a lot of positive comments and many helpful suggestions about the web site through the fill-in comments.

The results from this survey and the two earlier ones will help us shape and refine the types of stories and information sources we seek out to deliver publication content that is of high interest and that meets the needs of our readers. Thank you for participating in the survey series; we’ll be doing more of them as the year goes on.

In March we asked about people’s willingness to participate in research-oriented surveys about CFS and the response was overwhelmingly positive, with 98% indicating a strong interest in taking part. Please participate in a research-oriented survey, that asks questions designed to harness patients' connections between triggering factors and symptoms. 

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