1999 Chronicle Reader Survey
Your opinions on issues affecting the Chronicle and the Association

By David Hoh, Editor

The 1999 Chronicle Reader Survey is complete and the results are in. Your response has been overwhelming, with more than 820 surveys returned. That represents more than 6% of the Chronicle's subscribers, extraordinary participation for a survey done in this fashion. That level of response, as much as your answers to the questions about the Chronicle, tells us how much you value this publication.
 
It also helps to ensure that a Reader Survey will become an annual event for the Chronicle.
 
The results of this first annual survey will benefit the editor and other staff members at The CFIDS Association over the coming months as they continue efforts to improve the Chronicle and focus the Association's efforts to best meet the needs of the Association's members. The results of the treatment questionnaire should be of interest to readers, as well. Initially, these responses serve as one more piece of information in considering the variety of potential treatments that are presented to you. Ultimately, they will lead to more focused and detailed treatment articles in future issues of the Chronicle.
 
The results are not scientific, since the respondents do not represent a random selection of Chronicle readers, but because so many of you did respond, the numbers likely give us a fairly accurate representation of the overall readership.
 
Here, then, is what you told us, and a first glance at what we are learning from you:
 
More than half of you have been reading the Chronicle for more than five years and nearly everyone who participated reported getting his or her own copy. We were curious about the extent to which the Chronicle was shared among friends and through support groups, and we're glad that so many readers choose to become members and receive their own copies of the Chronicle. And most of you read it all, although not all at once.
 
At the same time, we were a bit disappointed about the degree to which readers share articles with friends, family member and health-care providers. Of those who answered the questions about sharing articles, most of you said you share articles only sometimes or never. Some of you noted that you don't know any other PWCs with whom to share articles. With regard to doctors, however, your interest in sharing articles seemed to correlate closely with your doctor's interest in reading them. Several people commented that their doctors already subscribe to the Chronicle, and that is helpful to know.
 
Only a handful of respondents were caregivers or medical professionals who were not also persons with CFIDS (PWCs). In several cases, a PWC and his or her spouse completed separate surveys, and we will look more closely at those surveys in the future.
 
Nearly all of you have been formally diagnosed with CFIDS, but most of you also have one or more other diagnoses. About half are diagnosed with fibromyalgia, about one quarter with depression, and smaller but still significant percentages with multiple chemical sensitivities (MCS) or neurally mediated hypotension (NMH). Other diagnoses ran the gamut from allergies to narcolepsy to attention deficit disorder, and a small number of people had been diagnosed with multiple sclerosis and Lyme disease. Some respondents listed as many as a dozen diagnoses.
 
Just as you are a very diverse group based on how doctors have diagnosed your illnesses, similarly, you are diverse by age of onset and length of illness. Most respondents became sick before the age of 50, with most getting sick in their 30s and 40s, but age of onset ranged from the pre-teen years to over 70. Quite a few wrote in words to the effect that, "I've always had this." There was no discernable pattern in terms of the number of years that respondents had been sick relative to age of onset.

Onset is complex 
About half of you reported becoming sick suddenly after an infectious illness. About one-third reported their onset was gradual. A smaller fraction reported that illness was acute following physical or emotional trauma. However, a significant number-about 10%-reported their onset as "other" or checked boxes for both acute and gradual. From these responses we conclude that the onset of CFIDS may not be as simple as experts usually describe.
 
About 20% of you have participated in a formal clinical research study, but only about half of those people are certain they would do so again.
 
A few of you wrote that you never told your doctor about alternative treatments you tried, and about one in 10 has used a treatment against a doctor's advice. While nearly half of you have discussed alternative treatments with your doctor first, the most common approach has been to try something and tell your doctor later. Apparently you know the old adage that it's easier to get forgiveness than permission.
 
About half of you reported receiving Social Security disability benefits, and about a quarter receive long-term disability benefits through private or state insurance plans. About 40% of you also indicated that a significant source of financial support comes from your family.

About the Chronicle 
You gave us a very clear message about advertising in the Chronicle. It's OK. Fewer than 5% were offended by advertising directed toward PWCs, but about 25% of you found it useful.
 
In terms of how articles in the Chronicle are written, the message was a bit less clear, however. About 90% of you want articles written so you can understand them, while more than 40% want articles written on your doctor's level. That adds up to more than 130%, since many of you chose both. That's understandable, but it's also a challenge that will require a creative solution. We're working on it.
 
Similarly, more than 90% of you told us we've been doing a good job of making the articles easy to read, but a few indicated that wasn’t a good thing. Equal numbers of you, about 12% each, said articles were either not scientific enough or too technical. Other comments: "About right," "relevant," "simplistic" and "too hopey-copey." No magazine can please every reader with every article, but you can be sure the Chronicle will try to carry a mix of articles to meet the spectrum of reader preferences.
 
We learned more about your reading habits and interests by asking about specific features in the Chronicle. Clearly articles about research and treatment carry the most interest and are seen as being most useful. Those issues also scored highest when we asked what you relied on the Chronicle to do for you. Overwhelmingly, you told us you count on the Chronicle to stay up to date on CFIDS research, although there was significantly less interest in research into related illnesses. Information about advocacy and support efforts was seen as less critical, but still important. A closer analysis of those responses will be especially important to the editor in making decisions about content in the Chronicle.

Setting priorities 
Your ranking of priorities for the Association will be interesting to the Board of Directors, as well as to the staff. The Board, as you may know, is responsible for developing the long-range strategic plan for the Association. Essentially, your message is that everything we do is vitally important. Your highest priorities, however, are providing information to patients, encouraging research and educating doctors. Funding research came up next to last, suggesting that many of you apparently agree with our philosophy that the Association’s limited resources can yield bigger results if we put our efforts into encouraging investment in CFIDS research by the government and, potentially, the pharmaceutical industry.
 
Last on your priority list for the Association is campaigning for a new name, but that doesn’t mean it’s not important. More than one third of you rated a new name as at least "very important."
 
The results of the treatment questionnaire are interesting, but remember that they in no way constitute a treatment study. There is no information here about how treatments were used, such as for what specific symptoms, specific drugs and dosages, combinations, length of use or degree of response. For many treatments, apparently strong positive responses must be tempered with similarly high numbers for "no effect" and "harmful."

Treatments that help 
Some numbers stand out, however. The greatest positive responses (helped a lot and helped a little), coupled with the smallest negatives (no effect or harmful), were posted for the two actions that Dr. Paul Cheney and many other doctors advise patients to do first: Pace your activity carefully to avoid relapses and make the decision to have a positive attitude about life. Those actions cost nothing, carry the lowest risk of harm, and you have control over them. Prayer, laughter, reducing stress and avoiding isolation also fall into that no-cost, low-risk category, and many of you listed them as having been most helpful to you.
 
Other treatments that ranked as the most helpful, without being potentially harmful, were avoiding problem foods and chemicals. Slightly lower ratings (a few more harmful responses, but still overwhelmingly helpful) went to massage and other forms of body work, yoga and tai chi, cognitive behavior therapy (CBT) and narcotics to control pain.
 
Getting treatment to improve sleep also made a big difference for many of you, although specific treatments posed potential problems. Antidepressants and Klonopin, both widely prescribed for sleep, have helped many of you, but a significant number felt these treatments were harmful to them.
 
Graded exercise and aggressive rest were both rated as helpful by many, but both also had relatively high numbers for "harmful" that should make one cautious. That doesn’t mean you should or shouldn’t try them. It means you probably should get more information and discuss them with your healthcare provider.
 
Several treatments rated moderately positive but with significant numbers reporting "no effect." These included increased salt and water, acupuncture, B-12 injections and NADH.
 
"No effect" responses dominated for some treatments, notably magnet therapy and removal of root canal teeth or mercury fillings. This was also the case for chelation, oxytocin, neurofeedback, hyperbaric oxygen therapy and the Nambudripad allergy elimination treatment, but the number of respondents who had tried those treatments was quite low--fewer than 8%. However, we took note of your interest in learning more about these treatments.
 
Only a handful of people responded about Chiari surgery.
 
The responses about specific herbs and nutritional supplements were widely mixed. We will be looking more closely at those responses, and it’s likely that herbs and supplements will be the focus of both future articles and reader surveys.
 
In the meantime, please don’t wait for a survey to let us know about your experience with a particular treatment or about your interest in reading an article about one. Just drop us a note any time.