ALS untangled on evaluating treatments and “ cures”

Not open for further replies.


Senior member
Mar 30, 2019
So this long post is another example of too much time on my hands and still functioning typing abilities. Given my propensity for long winded responses, there is possibly some question about my mental faculties.

Lynn, I agree that those familiar with Dr. Bedlack’s willingness to think creatively in a number of ways is very important work that can only help in the continued efforts to better understand this extremely complex disease. There are several other specialists here and abroad—Dr. Cudkowicz , Dr. Appel as U.S. examples—that are also willing to expand upon traditional ways of thinking and researching.

I believe that Bedlack has now identified more than fifty “reversals” since he started this research, with the oldest case he could identify and confirm the diagnosis through a thorough review of their records and history being Nelda Buss, who was diagnosed in 1979. I imagine there were other cases throughout the 20th century that we will never know about.

I’m sure his Reversals research has been discussed at length in other threads, but I balk a little at the use of the word “reversals” and how someone not fully immersed in the details of his research may hear that and assume that everyone in this small group has regained most or all function, which is not true.

I also have a suspicion that despite his teams rigorous record review to confirm their diagnosis there are a few cases that were misdiagnosed, and perhaps a few other cases in which the sustained improvement was due to a longer than normal plateau with minor improvements. Many of these folks had a very slow progression to begin with, which further clouds the research. Bedlack fully acknowledges these potential issues in his online presentations, but many pALS don’t dive that deep.

As you said, there really isn’t a common thread among these individuals other than a very weak link to the use of Theracurmin by several members of this elite group. As much as Bedlack and all of us that follow his research wished there was a smoking gun, that hasn’t happened. Too many variables, too small a sample group, and too many variations of MND. Maybe someday, thanks to his work and the work of others. But not yet for those with the non-familial version with a specific genetic mutation.

My last observation is perhaps the most important: the unintended consequence of this research. Everything from energy healing to hyperbaric oxygen chambers to expensive supplements have been attributed as the reason for the improvements, and I have no doubt that many pALS will spend lots of money trying one or more of these on the infinitesimally small chance it will work for them.

Hope with MND is so sparse that I understand, but I group these treatments in with this “red flag” thread. In some ways it is worse because there is documentation of improvement that we so want to believe something like a hyperbaric oxygen chamber or energy healing will also work for us. When it doesn’t, it can be even more emotionally destructive.

As Laurie and others have so eloquently said, there is nothing wrong with taking a couple of supplements (such as Theracurmin), but time, money, and emotional health is better served by focusing on maintaining overall health, embracing adaptive equipment to improve quality of life, and spending time doing the things we love with the people we love until we can’t.
Not open for further replies.