Larisa Syrow, MD, Neurologist and Coco Newton, MPH, RD, CNS presenting Healing ALS Observational Study results at the American Neurological Association Annual Meeting in September 2024
The 2024 Healing ALS Observational Study shows that 85% of those active in our programs have slowed, stopped, or reversed ALS symptoms.
BACKGROUND: Amyotrophic Lateral Sclerosis, ALS, is a progressive neurodegenerative disease typically of unknown cause and no known treatment. Multifactorial causes have been postulated in the literature, yet medications to date have not changed the outcome. Integrative Medicine takes a multi-systems approach to identifying and mitigating root causes through multi-component personalized interventions.
ALS is reportedly irreversible, typically leading to death within 2 to 5 years of diagnosis. There are, however, 60 confirmed cases of ALS reversals, 48 published. ALS reversal has been defined as a dramatic and persistent recovery of motor function and ability of 4 points improvement on the ALS Functional Rating Scale-Revised (ALSFRS-R) for at least 12 months.1 Reversals have been associated with various Integrative Medicine interventions.1
HYPOTHESIS: We propose that ALS patients who employed a variety of Integrative Medicine interventions learned through their integrative practitioners, weekly group ALS education, and support groups will slow, stop, and in some cases, reverse the progressive loss of function typical of ALS.
METHOD: In this observational study, participants freely volunteered to enter their data monthly into a secure Healing ALS Registry. This registry tracks monthly data for ALSFRS-R score, ALS Supplemental Questionnaire (ALSSQ™), as well as detailed physical, environmental, laboratory, medications, dietary intake, supplements, and emotional/psychological data. Data collected demonstrates that registry participants have utilized various subsets of the integrative interventions available.
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ALSFRS-R RESULTS: The ALS literature reports an average loss of 1 point per month in ALSFRS-R.2. Preliminary analysis of 45 ALS patients who completed their registry entries during the study period (March 31, 2023 to March 31, 2024) showed an average loss of approximately 0.31 points per month in ALSFRS-R, indicating a significant slowing of ALS disease progression, including those who gained functionality (increase ALSFRS-R score) and others who had no loss of function in 12 months.
During the 12 month period as measured by the ALSFRS-R Score, approximately:
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During the 12 month period as measured by the ALSSQ Score, a measure of Quality of Life including energy level, pain, sleep quality, fasciculations, cramps and mucous:
DISCUSSION: We have observed that identifying root causes, combined with Integrative Medicine interventions focused on mitigating those root causes, may slow ALS progression more than standard approaches. We will discuss further factors including time since diagnosis and possible associations between interventions and outcomes.
