The room was crowded at 8am for the first presentation of day two, from Dr Doug Sipp (RIKEN Institute, Japan) on ‘Unregulated ALS/MND treatments and public education’. Dr Sipp provided an insightful and entertaining overview of the plethora of self-styled stem cell ‘clinics’ and the tactics they employ to attract business. During the talk, the song Snake Oil, by the country singer Steve Earle, kept going round my head….
“Ladies and gentlemen, attention please
Come in close so everyone can see
I got a tale to tell
A listen don’t cost a dime
And if you believe that, we’re gonna get along just fine….”
Time was given over for a discussion on the issue of unregulated treatments, moderated by Dr Rick Bedlack (Duke University) and involving myself and Steven Byer of the US charity ALS Worldwide. Dr Bedlack is one of the founders of ALSUntangled, a consortium of ALS clinicians that used the Internet and social media to investigate alternative and off-label ALS treatments. Although in its early stages of development, ALSUntangled is fast becoming a very important resource to people with MND, providing the sort of objective information that helps people to come to an informed choice on whether or not to pursue alternative approaches to treating their disease.
There was clear consensus among those in the room that clinicians, scientists and patient associations need to find mechanisms for working more closely together – in separating ‘hope from hype’ and providing a more accurate explanation of the potential uses of stem cells in both basic science and disease treatment. Stephen Byer talked about the two C’s: the need for closer Collaboration and sharing of information; and better methods of Communication. I added a third – Consistency – to the discussion. We don’t necessarily all need to be providing exactly the same message, as different individuals and organisations we may well have differing opinions, but we should be basing those opinions on the same level of information and understanding.
