As of January 22, 2024 we found one new case report https://www.frontiersin.org/articles/10.3389/fneur.2023.1329541/full. This describes a person whose ALS progression improved by objective measures in association with starting a ketogenic diet. This changes our TOE “Cases” Grade from D to A. However, since ALS progression is known to be non-linear, with periods of stability or even improvements occurring in patients on placebos (https://www.neurology.org/doi/10.1212/WNL.0000000000002251#:~:text=ALS%20plateaus%20and%20small%20reversals,important%2C%20and%20warrant%20further%20study.), this cannot be construed as proof of treatment effectiveness.”
Key Information
Ketogenic diets have plausible mechanisms for treating ALS. One flawed preclinical study and two Patients Like Me participants reported benefits; these were not independently verified. Two other Patients Like Me participants and one patient under
the care of an ALSUntangled investigator did not show benefits. A trial of a ketogenic diet was only able to enroll a single patient and their experience cannot be interpreted due to the lack of any control group. We hope to see another trial of a ketogenic diet in people with ALS. Until then, given the frequent side effects, we do not advise such diets for the treatment of ALS