ALS Untangled®

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

Mechanistic plausibility

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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Rife Machine and Retroviruses

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It is possible, although currently unsettled, that ALS in some individuals may be due to a retrovirus. Even if true, however, Rife’s microscope technology, his identification of specific frequencies for pathogens, and the ability of Rife radio frequency machines to kill pathogens, are all unproven and highly implausible. We have identified no verified cases of ALS improving on any objective outcome measure with the Rife Machine. At this time ALSUntangled does not support the use of the Rife Machine for ALS.

Sodium Chlorite Oral

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The NP001 formulation of sodium chlorite acts through a plausible mechanism and preliminary data suggest that it is safe and may slow ALS progression in some PALS. The WF10 formulation of SC appears to act through this same mechanism. Although WF10 is available for off-label use, it is very expensive, may have more side-effects than NP001, and at this time has only scant anecdotal evidence for efficacy in PALS. ALSUntangled supports further carefully monitored studies of NP001 and WF10 in PALS. In contrast, oral sodium chlorite has potentially dangerous and toxic side-effects may hasten disease progression, and is not clearly absorbed from the gut. We do not recommend further use of oral sodium chlorite unless it can at least be shown to be safe and to act on mechanisms in humans that are relevant to ALS.

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.

Marty Murray’s Method

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In our opinion, there are many serious problems with MM’s approach. First, ALSUntangled is aware of no evidence to support MM’s theory on ALS pathogenesis. No case of ALS has ever been shown to be caused or exacerbated by emotional repression. Statements that patients may have somehow caused their own ALS by repressing their emotions are not only completely unfounded but potentially hurtful, as pointed out by the numerous angry patient and caregiver posts cited. MM’s statement that ALS development “is never really about genes” demonstrates that he has a shocking lack of awareness of more than a decade of ALS scientific literature. Despite his claim that he is not offering a treatment, rather merely “teaching or coaching”, it is clear that some of those he contacts see his program as a potential therapy. It is also clear that MM has implied to clients that his method can lead to dramatically effective results, potentially ‘solving’ their ALS problem. Reticence to call an intervention a ‘treatment’ is a strategy sometimes used to avoid laws that restrict the practice of medicine without a license. In our opinion, degrees in political science, economics, and finance are not qualifications to provide medical advice, medical teaching or medical treatment. In the future, we hope that MM will clarify his lack of medical training, and the fact that he is offering ‘teaching or coaching’ and not medical treatment, to prospective clients. We find no evidence that MM has ever ‘solved’ or cured ALS. Of his few reported ‘successes’ the two we could contact reported improved attitudes and motivations. It is not clear whether these had anything to do with his approach, or to one of the other alternative or off-label approaches being utilized, or (most likely) to the benign natural history of their unusual motor neuron diseases. We could confirm no definite motor improvements and Case 2’s neurologist documented worsened motor function over the past year. Thus, terms like ‘solved’ and ‘cured’ should not be used by MM in describing his offering to patients. Finally, MM’s practice of cold-calling patients with ALS and their families is morally and ethically questionable and is clearly disturbing to many. Patients and families who receive harassing phone calls should be aware that they can take action against the caller (5).