Is weight loss inevitable in ALS?

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Muscle wasting is one of the most striking symptoms of ALS. There were studies by Kasaskies and others, that demonstrated ALS patients have to ingest much more calories than comparable healthy persons. Our website has its own calorie calculator.

Johannes Dorst and colleagues from Ulm's university, conducted a randomised controlled study (Safety and Tolerability of Ultra-high-caloric Food Supplements in Amyotrophic Lateral Sclerosis (ALS); TOLCAL-ALS study) in 64 patients with possible, probable or definite ALS according to El Escorial criteria. Patients were randomised into four groups:

  • a high-caloric fatty supplement (405 kcal/day, 100% fat),
  • an ultra-high-caloric fatty supplement (810 kcal/day, 100% fat),
  • an ultra-high-caloric, carbohydrate-rich supplement (900 kcal/day, 49% carbohydrates)
  • an open control (OC) group without any supplement. The primary endpoint was tolerability. Patients were followed up over 4 weeks.

Gastrointestinal side effects were most frequent in the ultra-high-caloric fatty supplement group (75.0%), while loss of appetite was most frequent in the ultra-high-caloric, carbohydrate-rich supplement group (35.3%).

During intervention, patients gained +0.9 kg/month of body weight in the high-caloric fatty supplement group and the ultra-high-caloric fatty supplement group. Patients in the controlled group continued to lose body weight (−0.5 kg/month).

The findings suggest that high-caloric food supplements frequently cause mild to moderate tolerability issues in patients with ALS, most notably gastrointestinal symptoms in high-fat supplements, and loss of appetite in high-carbohydrate supplements. All three high-caloric food supplements tested are suited to increase body weight.

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This book retraces the main achievements of ALS research over the last 30 years, presents the drugs under clinical trial, as well as ongoing research on future treatments likely to be able stop the disease in a few years and to provide a complete cure in a decade or two.

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