ALS Untangled®

ALSUntangled® reviews alternative and off label treatments (AOTs), with the goal of helping people with ALS make more informed decisions about them.

Patient case reports

Accilion

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In our opinion, Accilion does not have a mechanism that is plausible for the treatment of ALS. There is one patient with a confirmed diagnosis of slowly progressive ALS who had modest objective improvements in motor function while using Accilion. However, improvements such as these have been described before, even in patients taking a placebo (32). We believe improvements in PALS are important to study, but they may have multiple explanations and thus are not proof of treatment efficacy (32). At this time we do not recommend the use of Accilion for ALS.‌‌‌‌

Declaration of interest: ALSUntangled is sponsored by the ALS Association and the Motor Neurone Disease Association.

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Protandim

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Protandim appears reasonably safe and inexpensive, has a promising mechanism by which it could help ALS, and there is a patient with a validated ALS diagnosis whose ALSFRS-R score improved on it. There are significant problems with the data described, including small study sample sizes, failure to demonstrate that Protandim increases Nrf2 in humans, failure to establish an optimal dose, and potential conflicts of interest among several of the key individuals involved. Nonetheless, in our opinion, further study of Protandim in ALS appears warranted.

Declaration of interest: ALSUntangled is sponsored by the ALS Association and the Motor Neurone Disease Association.‌

Click here to download the complete review.

Lunasin

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Lunasin has interesting mechanisms of action that might be useful in treating ALS, and it appears reasonably safe although some forms of it are expensive. While some PALS have reported improvements on lunasin, we have thus far found only one in which we were able to independently validate these improvements. This patient had atypical features for ALS including a history of myasthenia gravis, which can produce weakness that improves spontaneously. At this time there is not enough evidence to recommend that PALS take lunasin. A reasonable next step would be a small pilot trial of lunasin with validated ALS diagnoses and outcome measures.

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Dean Kraft, Energy Healer

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In our opinion, Dean Kraft’s energy healing lacks a plausible scientific rationale. The experiments listed on his website as proof of his being able to emit some sort of energy have never been published in a peer-reviewed journal and thus cannot be properly validated. The strongest evidence for his being able to heal ALS comes from the case report of Nelda Buss who appeared to have ALS, and while under the care of Dean Kraft and a physical therapist, recovered nearly completely. Spontaneous remissions in ALS are very rare, but certainly have been reported before. One case cannot be considered proof of a specific treatment effect. At a minimum, a small well- designed case series would be necessary. We would be happy to work with Dean Kraft to design such a study if he is interested. Without more evidence, ALSUntangled cannot support this expensive alternative treatment for ALS.

The Hickey Wellness Center

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The Hickey Wellness Center infrastructure is clean and professional. Dr. Hickey has a good bedside manner, and clearly believes in his protocol (indeed he himself is on it, and has had his own fillings removed). However, at this time, we are not convinced of a link between heavy metal toxicity and ALS. The metal testing performed in the Center is un-interpretable given the lack of ‘normal’ post- chelation metal ranges. Similarly, concerning are the lack of validated diagnoses, an appropriately detailed informed consent form, a consistent protocol across patients, objective outcome measures, or even adverse event tracking. As a result of these problems, ALSUntangled cannot currently condone most of the Hickey Wellness Center’s approach toward ALS. We do endorse two of Dr. Hickey’s practices: stressing hope, and once all the important information about an alternative therapy has been provided, respecting a patient’s wish to pursue it even if it is against our advice.