ALS Ice Bucket Challenge Progress
Coping with ALS sometimes means people living with the illness and their loved ones consider “alternative” or experimental treatments as potential measures to slow disease progress. Such treatments fall outside the parameters of mainstream medicine. Or more specifically, according to the National Institutes of Health’s National Center for Complementary and Alternative Medicine, “‘Alternative’ refers to using a non-mainstream approach in place of conventional medicine.”
The decision to choose alternative treatments involves private and sometimes complex decision-making on behalf of the person living with ALS and their families. Available to help with the process is “ALSUntangled,” which is “a global scientific effort to help people with ALS investigate alternative and off-label therapies for ALS.” Investigations into alternative therapies come by way of research conducted by ALS clinical partners and direct conversations between people living with ALS and medical staff. ALSUntangled has “ninety ALS clinician-scientists and patients from 10 countries participating in the investigations.”
Both “Completed” and “Open” reviews can be found on ALSUntangled. Under the Completed category, for example, “hyper immune goat serum (Aimspro)” for the treatment for ALS remains “unproven,” according to the authors. Similarly, in the review of “Blue-green algae (Spirulina) as a treatment for ALS,” the authors conclude there is “no evidence that Spirulina is effective” for the illness. The website’s Open Review category invites visitors to vote on potential ALS treatments they most want to see reviewed of the choices offered. Readers can learn more about the specifics of participation in ALSUntangled to stay informed and be part of a dynamic, digital conversation.
Discussions with your doctors and treatment team members are standard practice when it comes to effectively communicating information about possible experimental or alternative treatments. The HONcode may be another useful tool in treatment explorations. The “HONcode is the oldest and most-used ethical and trustworthy code for medical and health-related information available on the Internet,” according to the Health on the Net Foundation, a non-governmental organization. The HONcode is broken out into categories for patient/individual, medical professional, and web publisher.
Any “Complementary and Alternative Medicine” (CAM) comes with its own cautionary tale. According to the Mayo Clinic, “Conventional medicine values therapies that have been demonstrated through research and testing to be safe and effective. While scientific evidence exists for some CAM therapies, for many there are key questions that are yet to be answered. In addition, some CAM practitioners make exaggerated claims about curing diseases, and some ask you to forgo treatment from your conventional doctor. For these reasons, many doctors are cautious about recommending these therapies.” The takeaway is that people living with ALS together with their treatment teams can use the available tools to make well-considered therapeutic choices.
