1999 Chronicle Reader
Your opinions on issues affecting the Chronicle
and the Association
By David Hoh, Editor
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.
also helps to ensure that a Reader Survey will become an annual event for the Chronicle.
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.
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.
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,
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
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.
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
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 wasnít
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.
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 Associationís 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 doesnít mean itís 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
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.
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.
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 doesnít mean you should or shouldnít try them. It means
you probably should get more information and discuss them with your healthcare provider.
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.
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 itís
likely that herbs and supplements will be the focus of both future articles and reader surveys.
the meantime, please donít 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.