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Jul 27

Searching for Clues in Ultra-Rare ALS Reversals

Former Packard researcher Richard Bedlack is trying to better understand the disease through people who get better.

People with ALS don’t improve. It’s one of the hallmarks of the disease, indeed of any neurodegenerative disorder. Although symptoms might improve temporarily, the general trajectory remains constant over time. Over the years, Duke neurologist Richard Bedlack former Packard scientist, has seen thousands of ALS patients, and they’ve all followed the same pattern. Every now and then, however, one patient seems to defy those odds, showing significant improvement after their ALS diagnosis. Either these patients never really had ALS to begin with, or something very unusual is going on.

Bedlack is spearheading an effort to determine which of these is true. Although he says it’s more than possible some cases of ALS improvements may have been misdiagnoses, the possibility that these individuals could ultimately crack the mystery of ALS is too exciting to turn down. So Bedlack is now on the hunt for the rarest of rare: those people with ALS that seem, somehow, to get better.

The Duke neurologist has a long history of approaching ALS with an open mind and a desire to investigate phenomena that others might write off as mere happenstance. His well-known ventures into what he calls the “dark corners of the Internet” have earned him the nickname of the Fox Mulder of ALS, after the X-Files detective.

Take the widely practiced but rarely discussed phenomenon of patient self-experimentation, whereby patients try a variety of over-the-counter or alternative treatments to see whether they might improve their symptoms. Bedlack felt it was his duty as a physician to investigate and evaluate these treatments, a process that he found himself repeating with patient after patient, and knew that other physicians were having the same issue. So he created the ALS Untangled project, funded in part by the Packard Center, that would create a central location where patients and physicians could submit their suggestions for treatments they had read about or had tried. In exchange, Bedlack and a team of ALS specialists would investigate the claims and publish their findings in an open access journal. This would give both patients and doctors the ability to better evaluate these alternative treatments. Most of them, Bedlack admits, were a bust. But a few, such as the use of coconut oil, seemed to help, at least somewhat.

Through his ALS Untangled work, Bedlack learned of an ALS patient who had used a protein supplement called Lunasin. After taking the supplement, he experienced a significant improvement of his ALS symptoms. ALS reversals such as this are extremely rare—less than 1% of ALS patients will experience a reversal—but they struck Bedlack as something worth researching. To make sure that he could separate the signal from the noise, he defined an ALS reversal as one where a patient showed a significant improvement on the ALS Functional Rating Scale that was maintained for at least one year. Understanding why these super-rare patients were able to halt their disease in its tracks could provide valuable clues in the development of new biomarkers or treatments.

His project consists of two separate but related studies. The first is studying these seeming ALS reversals more in depth. Did those with reversals of illness actually have ALS, or did they have another type of motor neuron disease? Did they carry some type of unusual genetic mutation that was able to mitigate the effects of ALS? Was it something in their environment? A treatment they had tried? For this Study of ALS Reversals, Bedlack is searching for verified cases via word of mouth and social media. Then, he will conduct in depth interviews with the patients and their doctors, reviewing medical records and collecting blood for whole genome sequencing and looking for antibodies.

For his second study, he is trying to replicate the treatment protocols of those individuals whose ALS reversals coincided with a new treatment they tried. If these treatments really are effective in slowing or reversing ALS, then they need to be able to work on more than just one person. Lunasin is just one of those treatments he has discovered.

“It’s hard to figure out what’s worth paying attention to. You have to come up with something really unusual to be sure,” Bedlack says.

In these series of unusual events, he hopes he might find clues about ALS.


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