Our mission is to empower and enable patient & public involvement in motor neuron disorders research

ALS Reversals – What are they?

April 2017

Members of the group received an overview of ALS reversals at a recent meeting, further details can be seen below:

ALS Reversals

 

Richard Bedlack

  Richard Bedlack

Rick Bedlack, a neurologist at Duke University in Durham North Carolina, first encountered an ALS reversal in 2011, while leading an ALSUntangled review of Dean Kraft, an energy healer. On Kraft’s website was a video about a lady, who was reported to have been diagnosed with ALS and progressed to where she had lost nearly all movement and was near death. After two years of Kraft’s treatments, she was reported to have recovered most or all her motor function to where she could walk and use her arms normally. Rick was sceptical but nevertheless investigated. Her medical records suggested that her ALS diagnosis was correct and since then, Rick has found 22 additional ALS reversals and has started to focus further research into the area.

There is a precedent for his work: a study of people who are infected with the HIV virus but never get sick showed that many of them have the same genetic abnormality, which causes their resistance and helped researchers create a new drug that works for everyone with HIV. Rick hypothesised that there were 3 possible explanations for ALS reversals:

  1. They did not have ALS in the first place, but rather an ALS-mimic
  2. A genetic factor that made them “resistant” to the disease (like the resistant HIV patients)
  3. Positive effects from a new treatment these people started or from removing some toxic environmental trigger.

Rick has designed two new programs called Replication of ALS Reversals (ROAR) and Study of ALS Reversals (StAR) to help work through these hypotheses and received start-up funding for these from the Larry Vance Hughes ALS Foundation.

In the ROAR program, he is testing the exact same treatments that people with reversals tried in a larger number of patients. In the StAR program, he will be looking for ALS mimics in people with reversals, and will be comparing their genes to people whose ALS does not reverse.

So far Rick has found that ALS plateaus in disease progression and small brief reversals are not uncommon. On the other hand, large reversals lasting a long time are rare; using a US database of ALS patients, Rick found that less than 1% of 1000 ALS patients had an ALS Functional Rating Scale-Revised (ALSFRS-R) improvement of at least four points lasting at least a year. Identifying ALS reversal in patients is key for enrolling more patients into Rick studies which are of vital importance to trying to identify a common ALS resistance factor.

People can find out more at www.alsreversals.org

News Archives