ALSUntangled: Lessons Learned after 5 Years

Dr Richard Bedlack is based at the Duke ALS Clinic in America. Back in 2009 he founded ALSUntangled and to start off MND Awareness week he writes about the group and what they’ve achieved in the past five years.

ALSUntangled started in 2009 as a method for helping people living with MND (commonly known as ALS in America) make more informed decisions about alternative and off-label treatments (AOTs) they were interested in.   I wasn’t sure how it would be received by people living with MND or by other clinicians.

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Happily, many in each group seem to find it helpful. We now have more than 1400 twitter followers. We get comments and suggestions from twitter followers every week. Our list of Completed Reviews is now up to 24 and we currently have over 100 Open Reviews that we are working on. I never imagined there would be this many AOTs out there! Luckily nearly 90 clinicians and scientists from across 10 countries have joined our investigative team are now involved in helping with our reviews.

Alternative and off-label treatments

One big surprise to me has been getting to know the proponents of some of the AOTs. I admit that when we started this program I worried that most of these would be “snake oil salesmen.” We have found a few of those but most seem to me to be “true believers.” Indeed, I have even watched some of them use their treatments on their family members and on themselves. Furthermore, proponents of AOT’s do some things really well that mainstream clinicians can learn from: they are impressively optimistic, respectful and responsive to their patients.

Scams or Science?

An even bigger surprise has been found in the AOTs themselves. While some look like scams (see the table of “Red Flags” listed below), others have encouraging anecdotal data and warrant further study. These include hyperimmune goat serum (Aimspro), luteolin/Lutimax, coconut oil, cannabis, vitamin D and fecal transplants (I know, this last one sounds wild but read the review!). In thinking about this topic more, it should not be surprising at all that patients might find treatments that work before scientists do. There are numerous examples of this happening in other fields. For example, Viagra was being studied for heart disease and it was patients who first noted its more potent and popular effects (http://www.cnn.com/2013/03/27/health/viagra-anniversary-timeline/index.html).

Looking forward

As ALSUntangled moves along, we will be trying to publish more frequent reviews, do more site visits, and find funding for trials on some of the more exciting AOTs we have received from PALS. We look forward to continuing to optimize social networking tools to promote shared decision making between people living with MND and clinicians.

“Red Flags” to watch out for when considering an AOT

–     Advertised as “dramatically effective” or “cure all” for multiple very different diseases

–     Advertised as “perfectly safe”

–     Non-MD making medical recommendations

–     Lack of oversight from an IRB, and/or lack of a detailed consent form

–     Lack of a standardized protocol

–     Large up front out of pocket cost

–     Subjective or no outcome measures

–     Lack of follow up

Find out more about unproven treatments via our website.

Thank you for reading our ‘blog a day’ this Awareness Month. We would gratefully appreciate your thoughts and feedback via this short 2 minute survey.

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