Considering the fact that electrical stimulation was first used as a medical treatment more than 100 years ago (30), and first used as an ALS treatment 30 years ago (31), it is disappointing that we have yet to find a clear way to use this to help PALS. PoNS™ is a newer version of this. There is a vague theoretical mechanism (neuromodulation) by which PoNS™ could potentially modulate neuroplasticity in the brainstem and cortex, but whether it provides any beneficial or deleterious effects on ALS progression is currently unknown. While there are early, promising data showing that the PoNS™ device improving gait in patients with multiple sclerosis, this may not translate to PALS. There are no pre-clinical data or clinical trials of PoNS™ therapy in PALS to determine efficacy. The PoNS™ device appears to be relatively safe but its substantial cost and prescription-only status will limit accessibility for PALS. Given the current lack of ALS-relevant data, we cannot currently support the use of PoNS™ therapy to slow, stop, or reverse ALS progression. We hope that this review of PoNS™ and the broader topic of neurostimulation spurs future research toward helping PALS.
Mechanistic plausibility
RCH4
RCH4 is an unlicensed, unapproved product reported to “probably slow the progression of your ALS” (6) on a website. The only peer reviewed publication we found on this product is a single abstract which was never presented at a meeting. We have been unable to determine RCH4’s structure or chemical class, and its purported mechanism is one that has never been shown to be useful in treating PALS before. We have been unable to independently verify RCH4’s reported efficacy or even safety. Thus, at this time, we cannot advise PALS to use this product. We hope the proponents of RCH4 will someday present more useful information about their product at a scientific meeting or in a peer reviewed publication.
We believe that regulatory oversight is important for optimizing patient safety on experimental drugs, and that independent peer review and replication are fundamentals of good science. Caution should be exercised around any product being developed and in clinical use without these safeguards and fundamentals in place.
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