Untangling the Knot of Alternative Therapy“The trick is having a place you can go for credible information.”
Richard Bedlack sat in an international ALS symposium in 2007, feeling a wave of conviction sweep over him. He listened as neurologist Leonard van den Berg, working on behalf of Dutch people with ALS, reported the details of a visit to a “stem cell clinic” in Beijing. As van den Berg described the cost, the ethics, the scientific validity of the treatment offered ALS patients, Bedlack — the Packard Center’s newest grantee — was thinking this is just what we need to do on a larger scale. “Most of us are aware of the problem of people with ALS pursuing alternate or off-label therapies,” says Bedlack, who heads Duke University’s MDA/ALS clinic. “The internet has created an incredible gateway to them and you see all kinds of things out there! But there’s absolutely no review of how effective they are, no fact-checking.” Now, just three years later, the endeavor called ALS Untangled (ALSU), which Bedlack founded, is a respected, effective project to bring a rational look at alternative therapies and the places that offer them. Richard Bedlack explains how it works. ALERT: You’ve tapped into a very real concern that ALS clinicians have about patients seeking these treatments, haven’t you?
BEDLACK: Yes. Someone can set up a site that says we have a chelation clinic for ALS and people are being cured. And they describe a patient. But you have no validation that their diagnosis or way they interpreted symptoms is right or even that the person exists. So far, there’s only been one side doing the talking. And we realized that’s a problem. ALERT: And it’s more than patients getting ineffective treatments… BEDLACK: Definitely. Patients were also coming back from alternate clinics with meningitis, for example, and other infections. That’s not to mention the cost. Some places charge over $100,000 for a single treatment. What’s more: People don’t realize that seeking these alternatives slows science. When patients don’t enroll in clinical trials, that harms everybody; it means it takes us longer to put trials together and get results, longer to find a cure for ALS. ALERT: So you began ALS Untangled… BEDLACK: …with a presentation at an ALS meeting about a year and a half ago. I wanted to see if others thought the idea was too far out. They didn’t. I got lots of encouragement. ALERT: Tell us what’s involved. BEDLACK: The trick is having a place where you can go for credible information. There are three parts to ALS Untangled. The first helps us find the alternative/off label therapies that people with ALS might consider. To do that, we’re using the social media venue, Twitter. People can “tweet” (text message) the alternatives they want us to check out via our twitter account. Then there’s the “war room.” That’s the group of roughly 70 experienced ALS clinicians in the United States, Canada and beyond — Israel, Ireland, Poland, Thailand and India, so far. ALSU members will upload information on an alternative therapy to a closed site — called NING — that allows free discussion. NING is essentially a private, dedicated Facebook. It gives the capability to display photographs and data. And it gives us access to a worldwide, 24/7 forum of clinicians. When there’s consensus, we publish a report online in the journal Amyotrophic Lateral Sclerosis available on this site for anyone to access. ALERT: What do you have so far? BEDLACK: So far, there are five ALSU publications that review separate clinics or therapies. ALERT: And are they proving useful? BEDLACK: I believe so. We’re getting feedback and expect more. We have 225 people so far “following” us on Twitter. And I know that I and my ALSU colleagues use the reports frequently. If someone comes to my clinic and asks about mistaking Lyme disease for ALS, I now give out useful printed information that’s not just my opinion, but that of a group of 70 top ALS clinicians. ALERT: When you investigate a clinic, is it always in person? And what do you look for? BEDLACK: We have to be invited to come to a clinic. So far, no one has refused us. We gather information on the actual site — on its cleanliness, on the nature of equipment — on what’s being offered and at what cost, whether patients are ethically informed, whether diagnoses appear correct, and, of course, whether the therapy works and how that’s measured. We interview patients, where possible. ALERT: Any surprises? BEDLACK: We’re not surprised at the outcomes. But when we first took this on, I thought the majority of those who offer these alternate therapies would be con artists. But that doesn’t always seem to be the case. True, we haven’t found that patients improve. But many of the clinic owners genuinely believe in what they’re doing. They don’t always intend to mislead people with ALS. What’s out there is a mix of snake oil sellers and the well-intentioned but misguided. ALERT: We’ve read your reports. Their tone is very measured. There’s nothing accusatory. BEDLACK: All we can do is stick to the facts, to see if there’s a rationale for something they offer. We don’t make assumptions about their motivation. That’s because ALS Untangled isn’t detective work. We’re scientists and clinicians. ALERT: Where are you headed with this? BEDLACK: We want to develop a library of information on alternative therapies and off- label medication uses. Many of these clinics are in far-flung places and we need to extend our reach. That’s one way the Packard grant is so useful. We can afford to send more of our group out into the field to report back. ALERT: A last word? BEDLACK: I think there are a lot of people with ALS who are scared, who don’t know which way to turn. We do the best that we can to get our side of the story out there. Related Links:ALS Untangled Twitter Feed World Federation of Neurology Research Group on Motor Neuron Diseases | 
