The use of alternative medicine by patients with amyotrophic lateral sclerosis

The use of complementary and alternative medicine (CAM) is increasing in all industrialised countries, especially in patients with chronic and incurable diseases. However, no data are available on the use of CAM by patients with amyotrophic lateral sclerosis (ALS). The German Association for Neuromuscular Diseases (DGM) mailed out a questionnaire on CAM to 350 ALS patients, 171 of whom completed and returned the survey (response rate 49%). The use of CAM was reported by 92 patients (54%). There were no significant demographic differences between users and nonusers. The patients used 73 different methods or substances; some tried up to 11 different treatments. The most widely used methods were: acupuncture (47%), homeopathy (40%), naturopathy (24%) and esoteric treatments (20%). The lower the patients' expectations from CAM, the better was the subjectively perceived effect. In most cases (60%), alternative treatments were performed by a physician. Patients spent on average 4000 (approximately US$4500) on CAM, generally without reimbursement. CAM is most often used in addition to conventional treatments and may be part of the patients' coping strategy. Open communication between patients and physicians is essential to warn the patients of medically or financially hazardous treatments. Future research should look at the possible palliative effects of CAM on symptom control and quality of life of patients and families.