Editor’s Note: The following article is reprinted with permission from The CFIDS Chronicle, Vol. 14 No. 4 Fall 2001.
The Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America recently surveyed medical professionals and researchers to determine their attitudes toward and knowledge of CFIDS, as well as potential barriers to diagnosis and treatment.
The short, 20-question survey confirmed some commonly held beliefs about the illness and pointed out areas where more education is needed. Data from the survey, which also identified physician spokespeople for the illness, will give the Association much-needed new information to interest the media. Reporters are constantly looking for fresh story angles, and the survey may provide the boost they need to decide to cover CFIDS.
Methods and findings
The survey questionnaire was mailed to the 8,000-plus medical professionals and researchers in the Association’s database, including those who subscribe to The CFIDS Chronicle and/or The CFS Research Review and others who had contacted the Association for information in the past.
Key findings from the survey include:
· The largest percentage of physicians surveyed (37%) believe the primary cause of CFS is immune dysfunction; an almost equal number said the cause is unknown.
· 53% of respondents said CFS is as disabling as other chronic diseases such as multiple sclerosis, lupus and rheumatoid arthritis, while 22% said that it is more disabling.
· 83% cited impaired memory and/or concentration as the most common non-fatigue related symptom.
· When asked what one symptom other than fatigue made them more likely to suspect CFIDS, or without which they would not make a diagnosis, the most common write-in answer was post-exertional malaise.
· 69% of respondents answered that it is possible to diagnose CFIDS in children 12 and over, while only 18% believe it is valid to diagnose CFIDS in children ages 5-12.
· When asked about treatment, the largest percentage of respondents (69%) recommended lifestyle adjustments, while smaller percentages also prescribe antidepressants (65%), sleep aids (44.7%), pain medication (30%), immune modulators (15%) and antivirals or antibiotics (12%).
· 92% of the medical professionals surveyed felt that more professional education about CFIDS is needed.
Uses for the Survey
The CFIDS Association will use information from the survey in its public relations and provider education programs. People with CFIDS (PWCs) can use the survey in their own education efforts by presenting the data to health care providers, family members, friends and employers seeking to understand the illness. For instance, the fact that 75% of the medical professionals surveyed believe CFIDS is as or more debilitating than other chronic illnesses may help impress upon others the physical toll this illness takes.
PWCs can also use the survey to raise awareness among their local media. A press release, fact sheet, cover letter and instructions for contacting media are available on the CFIDS Association’s Web site.