Second Reader Survey: Discerning, But Passionate About Research

In our second of a series of three reader surveys, this one conducted throughout the month of March, we learned a lot from the 866 respondents who took time to answer 10 detailed questions about their preferences. Here is a summary of the responses to queries about the research and treatment content we carry in our monthly e-newsletter, CFIDSLink:

• Fewer than half, 41%, of this month’s respondents had also completed the February survey, but 86% reported reading CFIDSLink regularly.
• About one-third (33%) are active on Facebook and one-fifth (28%) had become a “fan” 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.
• An overwhelming 98% said “yes” to a question asking if they would be willing to participate in surveys that provide information to researchers studying CFS. (Guess what’s coming soon?!)
• 88% of the respondents have been diagnosed with CFS; 5% are loved ones or friends of CFS patients; and 4% thought that they might have CFS but had not yet been diagnosed.
• The treatment stories of highest interest are those about well-studied therapies of any kind (92%); only 32% indicated having high interest in faith-based strategies. The other categories (pharmaceutical, behavioral, alternative, self-care and coping therapies) fell in between. Stories about “novel approaches of any kind that may not yet have supporting data” received the most mixed responses. Because we get the most “negative” response to stories about behavioral therapies, we were interested to learn that 81% of respondents indicated being highly or mildly interested in this topic. The most objectionable type of story related to faith-based strategies, with 24% of respondents telling us that “do not care to read” or “would strongly object to” stories of this nature.
• As expected, readers are most interested in hearing treatment news from expert CFS physicians (69%), with individual patients ranking second and health care professionals from any discipline ranking third. Of least interest were articles from corporate entities (pharmaceutical companies and product representatives); consumer groups and government agencies got the second worst marks.
• 51% of respondents told us they look to search engine alerts (e.g., google news) for online information about CFS research. Fewer than a quarter (23%) use the National Library of Medicine’s PubMed to track CFS research.
• Research studies about treatment were the most popular, with 94% indicating high interest; studies of the cause of CFS came in second with 82% marking “high interest.” Studies with negative results and studies about who is most likely to get CFS were the least interesting to our readers.
• When asked about how they interpret results of research they see reported in more than one place, 57% of readers indicated that they “evaluate the study on its own merits, regardless of who reports on it.” Only 3% get irritated by the repetition.
• The group was split fairly evenly with respect to participation in CFS support groups; 44% reported having ever taken part in one, but the written comments were very polarized about the value or quality of that experience. Both “live” and online support groups were cited as being either extremely helpful and an awful experience.
• Nearly half of the group was interested to learn more about Health 2.0 sites that enable patients to share detailed medical information in a secure environment. 7% said they already do so, but 39% said they would hesitate due to privacy concerns or lack of time/energy.
• March survey respondents are fairly “connected” to their electronic gadgets, with 53% reporting that they check email regularly throughout the day (or more often). Just 17% said they are online less than once a day, and the rest told us they check email once or twice a day.

For the month of April, we’re collecting information about patients’ stories and the types and sources of information about self-care and coping that you prefer to read. This survey will close on April 30 and will complete the series of 10-question reader surveys we began in February. Please click here to participate. Only one response is accepted from each computer, so if you’ve already taken the survey, you’ll get a message letting you know that.

In March, one of the most popular stories in that edition of CFIDSLink was the summary of responses to the February survey. Based on your enthusiastic response to our survey series and great participation numbers, it won’t be long before you hear from us again with the opportunity to participate in research-oriented surveys and new reader surveys as we tweak content and delivery formats!

____________________________________________________________________________

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