Gradually, patients began telling Bedlak about the dozens of purportedly effective drugs and treatments they were trying, touted on dubious websites and anonymous forums: vitamin supplements, unapproved serums in glass vials, even acupuncture programs — the kinds of “treatments” the doctor could easily dismiss or ignore.
“It really wasn't documented in the medical record back then, and it wasn't something people talked about,” Bedluck said. “When patients would check in, the nurses were only interested in medications. They weren't interested in vitamins or supplements or products whose properties they didn't even know. So one day I asked, 'What is this all about?' And someone said, 'Well, I thought maybe you didn't want to talk about this.' Then the more I thought about it, the more I thought, 'Wow, if this is a common thing that people are doing, shouldn't I be interested?'”
Patients didn't have the time to wait for the conclusion of long-term clinical trials on these products and programs, and if they were looking for answers elsewhere, Bedluck felt he had a responsibility to offer his input on what they were trying, rather than simply dismissing everything.
“Why not use your years of training to work with patients and help them make more informed decisions about these things?” Bedluck said.
Many of his medical colleagues disagreed.
“Most of my colleagues said, 'This is a terrible idea, because all you're going to do is give some legitimacy to some weird products and websites that are out there. They'll say this product is being researched by Dr. Bedlack and a team of respected scientists at Duke University,' and they're right,” Bedlack said.
But he thought the potential benefits outweighed the risks.
“I feel like I have to put it all together and ask myself: ‘What is it all going to be?’ To me, this need, this desire in the patient community, is far greater than any criticism I received initially.”
In 2009, Bedluck assembled a group of like-minded researchers to found ALSUntangled, a group dedicated to investigating alleged or emerging ALS treatments that were appearing online.
“What if we worked together? What if we crowdsourced this? What if we created a team of clinicians and scientists who were interested in doing this together?”
Together, they took a closer look at one of the group's first product reviews, Iplex, a drug containing an artificial insulin-like growth factor, the dysregulation of which has long been thought to be linked to ALS. They concluded that data from a promising Italian study lacked a control group and may be contaminated by selection bias..
“The problem is the time it takes to really research one thing, it takes time,” Bedluck says. “It takes about 40 hours to really research one product well, and there are hundreds of these products out there and nobody has the time to do them all.
Since that initial review, the ALSUntangled team has grown to more than 130 researchers across 11 countries.
“Since 2009, not a day has gone by that I haven't been working on a review of a product that a patient asked about,” Bedluck said.
ALSUntangled reviews dozens of products and treatments and keeps information up to date as new evidence becomes available.
Most have been relatively obscure, and some have been quite dangerous, but a few have actually shown some really promising results.
This research allowed Bedluck and his team to wander down strange paths and just see where they lead. And now, one of their strangest paths may finally be paying off.
Two years after publishing his first ALSUntangled review, Bedluck stumbled across yet another unreliable internet rumor related to ALS.
“I came across a video of a woman in Virginia who said she had ALS, which was progressing rapidly and she had lost almost all function.”
Her name is Nelda Bass, a mother of two whose battle with ALS began in the mid-'80s, when she told her doctor about the ominous and mysterious symptoms she was experiencing.
“At first, I had weakness in my hands,” Bass said, “and then my legs started to get weaker. I had a few falls. I went back to the doctor and he said, 'Okay, let's schedule an appointment for you in January with the neurologist.'”
Bass believed her doctors didn't want to give her the bad news: She wasn't officially diagnosed with ALS until she was 47, and by that time, walking had become a struggle.
“My husband got up and picked me up and I think we cried the whole way home.”
Bass consulted with ALS specialists — who Rick Bedluck said were some of the best in the business at the time — but her condition only got worse.
“I was diagnosed in January and by July I was in a wheelchair,” Bass said.
Desperate, she sought help from Dean Craft, a self-described “energy healer” from New York City who she had heard about in a magazine article.
“When I first went to him, he gave me my first treatment, but my diaphragm was starting to weaken and I wasn't able to breathe as well as I used to,” Bass said. he told the hosts of daytime talk show “The View” in 1998.“And I noticed I was getting better at coughing and blowing my nose.”
For more than a year, Bass and her husband would drive from their home in Virginia to New York City every other week, where they would bring Bass into Dean Kraft's small office, where Kraft would place his hands on Bass's head and claim to be emitting healing energy.
“He worked on me for about two hours on Saturday and two hours on Sunday,” Bass said.
Bass said he paid Kraft a total of about $25,000 for those sessions.
“He said, 'You can't always believe what the doctors tell you,'” Bass said.
“When I first went to him, he gave me my first treatment, but my diaphragm was starting to weaken and I wasn't able to breathe as well as I used to,” Bass said. he told the hosts of daytime talk show “The View” in 1998.“And I noticed I was getting better at coughing and blowing my nose.”
For more than a year, Bass and her husband would drive from their Virginia home to New York City every other week, where they would bring Bass into Dean Kraft's small office, where Kraft would place his hands on Bass's head and claim to be emitting healing energy.
“He worked on me for about two hours on Saturday and two hours on Sunday,” Bass said.
Bass said he paid Kraft a total of about $25,000 for those sessions.
“He said, 'You can't always believe what the doctors tell you,'” Bass said.
Dean Craft died in 2013 from a massive heart attack. He was 63. Craft appeared in the same segment on The View and in other videos about the bus saga.
“I don't require people to believe in any religion,” he told the host. “They don't even have to believe in me. I just lay my hands on them and, fortunately, the vast majority of people recover.”
Then, years later, Bass said the same thing happened to her.
“I had a walking party at the Marriott Hotel and invited all my friends, and I asked Dean to come to the party. So they came over from New York and he asked me to dance with him.”
When Rick Bedluck learned the story of Nelda Bass, he was shocked.
“She made a full recovery and the video was actually pretty convincing,” Bedluck said.
Again, the doctor's curiosity was piqued. He contacted Bass and asked if her doctor would give Bedluck permission to send her medical records.
She obeyed.
“At the end of these tests, I was convinced that she did indeed have ALS, that it had progressed to the point of near death, and then she made a full recovery under the care of this energy healer for two years,” Bedlach said. “What I wasn't convinced of was that it was energy healing that had made her well, in part because there was no mechanism for energy healing that made sense. For example, there is no known biological mechanism for energy coming from someone's hands to heal dying motor neurons, so that part didn't make sense.”
Bedluck contacted Kraft to try to organize a study of his method.
“[I] He said, “I don't know how this came about, but I'd like to do a small study using your technique and about 10 patients.” I'll never forget his response. He said, “Richard, a believer needs no further proof. A non-believer can never have enough proof. And that was the last I ever heard from him.”
But the story sparked a conversation within ALSUntangled about other mysterious illness recoveries his fellow researchers have witnessed.
“They said, 'Do you know these cases have been reported in the literature since the 1960s?' And in fact, many of the members of the ALSUntangled team said, 'Yes, we've seen people who we thought had ALS, and their symptoms progressed for a while, but then they got better.'”
Colleagues said they thought the patients had simply been misdiagnosed and didn't actually have ALS, but for Bedluck, it was a lightbulb moment.
“And it got me thinking: 'Wait a minute. Why aren't we studying these people? How many of them are there?' There's precedent for studying people who are unexpectedly resistant to disease, finding a pathway that hasn't been manipulated before, and finding a treatment to manipulate that pathway and ultimately help everyone,” Bedlach said.
So Bedluck launched a new program to study these reversals: He began digging through medical records, sending out surveys, and trying to find common ground.
“All of a sudden, over the last 12, 13 years, I've been going in a completely different direction, working on ALS recovery, and I have to say, it's been really interesting as well.”
Bedluck has seen 22 other ALS cures, and last year his research produced a breakthrough.
“We've actually found a target,” Bedlak says. “About a third of these patients appear to have a genetic abnormality that's very rare in patients with typically progressive ALS. I think this is most likely the cause of at least a third of these ALS recoveries. And now we're doing a much larger study to see if there's a connection in a huge population of ALS patients. If there is a connection, I would drop almost everything I'm doing to participate in a clinical trial. But again, I'm heading in a direction I never thought I'd go.”
Nelda Bass, now 82, still believes Dean Craft saved her life, but she's open to other explanations — assuming Rick Bedluck and his tireless team of researchers can find any.