Two Chicago-area sports journalists gathered the tweets directed at them and asked men to read them to their faces. The result went viral.
*If you want to hear the interview with Ben Harris, advance SoundCloud to 8:00.
A group of people suffering from Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease have started cooking up their own drug therapies in do-it-yourself drug trials.
Frustrated with the slow pace of clinical drug trials, they say they don’t have the luxury of waiting.
ALS, which affects about 30,000 Americans, causes cell damage in the brain and spinal cord, and gradually robs people of the ability to move, speak and eventually to breathe on their own. Life expectancy is about two to five years after diagnosis.
“My actions today may help the 44-year-old male with a wonderful family and nothing but good things to look forward to who gets this diagnosis next year, or next decade.”
The Wall Street Journal reported that the patients have figured out that sodium chlorite is the main ingredient in NP001, a compound made by Neuraltus Pharmaceuticals.
The patients have started either drinking or injecting themselves with sodium chlorite on their own, and they’re recording their progress on websites, including Patients Like Me.
Ben Harris, 45, of Bloomington, Indiana, is one of those patients. He was diagnosed with ALS last year, and was part of the Neuraltus clinical trial. When that ended, he decided to join the DIY trial, and began injecting himself with sodium chlorite.
Since Harris has difficulty speaking, Here & Now producer Kevin Sullivan interviewed him online. Part of that transcript is below.
Kevin: Ben, first of all, thanks for agreeing to take part in this interview.
Ben: My pleasure.
Kevin: I know this is a very personal question, but can you start off by describing what your condition is like now? For example, you can obviously type, but what are your physical limitations now?
Ben: Please don’t hesitate to ask any questions, no matter how personal they might seem. My life is an open book. At this point I am at the tail end of being able to communicate verbally and being able to eat. I would say in a few months I will not be able to utter a word, and I will need to have a feeding tube placed. All my muscles are affected, walking is slow and climbing stairs is getting a little challenging. I have to exercise caution. One might not even be able to tell by observing me that there is anything wrong in those areas other than speech, but it takes a great deal of effort to appear normal.
Kevin: After the Neuraltus clinical trial for NP001 ended you started taking sodium chlorite on your own, injecting yourself with it. Are you still doing that and if so, do you feel it’s been effective?
Ben: Yes I am. Although the positive effect of sodium chlorite did begin to wear off near the end of the NP001 trial, and it seems to have little effect now, other than a possible slowing of my disease, I did have one hint that it may still be helping about one month ago. After my one of my self infusions, my swallowing improved, just as it had done in the beginning and early part of the study. This lasted for about one week and then faded.
I was just about to give up on it and this event has me determined to stick with it as long as I am able.
Kevin: Do you think there’s a possibility you could be chasing ghosts by taking the sodium chlorite, hoping for something that might not be there?
Ben:: Certainly, however, sodium chlorite is different from any other substance tested for ALS, either formally or informally, in that it has actually improved the status of those who took it, albeit temporarily. Nothing has ever done that.
Kevin: You’re sharing the results of taking sodium chlorite by taking part in an ad-hoc study, where you share your information on a website called Patients Like Me. How do you hope that information will be used? And do you feel that the analysis of that information could end up helping you?
Ben: I understand that the likelihood of one of these ad hoc studies leading to a significant discovery is low, but that is only half the point. It is a horrible feeling thinking about the hundreds of substances out there and wondering whether one of them helps but you are missing out.
My hope is that the information will ultimately be analyzed by the mathematicians at PatientsLikeMe and if PLM opens their database to the public, this data could be analyzed by anyone around the world. It will be admittedly noisy but mathematical algorithms have become sophisticated to the point that they can filter out much of this noise.
On the one hand, I do hope that I hit pay dirt with one of these trials, but the chance of this happening is unlikely. However, my actions today may help the 44 year old male with a wonderful family and nothing but good things to look forward to who gets this diagnosis next year, or next decade.
As long as those engaging in Do it Yourself trials are open about what they do and there is a mechanism to record what they do, they will succeed in moving the search for a cure forward, even if they fail to help themselves.
But in order for this to happen we must vanquish the shame associated with DIY, and that shame comes primarily from the medical community.
Kevin: Are you taking part in any other DIY trials?
Ben: Yes. My criteria for a DIY trial is 1. There has to be some evidence that it helps, most likely from a mouse study, 2. It has to be “cheap” and 3. It has to be safe.
Kevin: I opened up your Patients Like Me page and can see the other treatments you’re taking. It looks like there’s a continuum of treatments you’re trying: from the homeopathic where you’re doing things like taking garlic supplements and eating pecans, and then on the other end of the continuum are treatments like sodium chlorite where you’re concocting your own version of a drug that is being tested. Is that right?
Ben: Yes, there is definitely a continuum. Most of the “treatments” people are trying are in the form of diet or supplements. Even taking sodium chlorite orally (like drinking it instead of injecting it like I do) might be called a supplement. Then there are some prescription drugs that some have tried over the years, like lithium.
Then there’s a treatment called C60/Fullerene — that stuff is really out there and it probably the riskiest thing I am doing because there are no human toxicology studies on that. But the mouse and rat studies showed no toxic effect even at doses 1000 x what I am taking.
Kevin: From what I’m reading, with C60/Fullerene, you put some sort of carbon material into olive oil. Can you explain how that works?
Ben: C60 Fullerene looks like soot, because basically that is what it is. When carbon burns it naturally forms these soccer ball shapes (too small for the naked eye to see) and is a black powder. It was discovered in 1985 and scientists and biologists have been tinkering with it ever since. The main problem with it is that it does not dissolve in water.
Only recently it was discovered that it dissolves really well in vegetable oil. So now scientists are ‘catching’ up and trying it out on animals.
When it dissolves in vegetable oil it turns purple or browning is the oil is green like olive oil.
There is some concern that if it is not properly dissolved it could be harmful hence the somewhat involved preparation of mixing it for days on end, putting it in a centrifuge and then filtering it.
The concern is most likely unfounded, but safety is important so I am doing it anyway.
Kevin: When the Wall Street Journal reported on this DIY movement to treat ALS, they spoke to doctors and researchers, who said one concern is that no one really knows for certain what changes Neuraltus — the company doing the NP001 clinical trial — has made to the sodium chlorite. So you might not even be taking the same thing as what’s being administered under the clinical trial.
Ben: These are very valid concerns, but what makes this kind of statement difficult to listen to without eliciting a strong negative reaction from me is that none of these doctors or researchers has taken the time to read our discussion threads or join the conversation. If they had they would understand that although Neuraltus has not publicly stated what is in NP001, we have figured it out, and if any of these doctors or researchers would take the time to read the discussion forums and follow the paper trial that we have uncovered they would agree. The offhand skeptical remark that “we don’t know what NP001 is” is made out of sheer laziness. What is equally offensive is the implication that because we are ‘mere patients’ we are incapable of understanding the science or biology surrounding this (or any) drug. We are a group of extremely well educated, careful and determined people who have collectively spent thousands of hours pouring over academic journals and patent applications.
Kevin: What about your family? How do they feel about you trying these treatments on your own? Or do they feel since you’re a medical physicist (who previously worked in radiation oncology) you have an area of expertise that other people with ALS don’t?
Ben: I think my background does help immensely. I understand the science behind these things, I understand the mathematics of the chances and I am not blinded by hope.
As for my wife — she trusts me and pretty much leaves the decision on what to try up to me. She sees me spending literally hundreds of hours researching these things and knows that unless I felt they were safe I wouldn’t do them. From the outside it seems like a reckless endeavor but on the contrary these are very well educated guesses. I have a son who is 7 and he is completely unaware of what I am trying.
Kevin: I was wondering, how much longer you plan to do this? It sounds like you’re spending a lot of time and energy researching and working on treatments to try and stop the disease, but are you giving up something else – maybe the limited time you have left with your family?
Ben: That’s a great question. The instant I was diagnosed I changed my lifestyle. Prior to my diagnosis I traveled extensively for my job. At times spending as much as a month on the road at a time.
I missed the majority of my son’s childhood from age 2 to 5, some of the most precious years of his childhood. That I did merely to earn a paycheck, not to save my life.
I’m still working full time but I no longer travel and as soon as the clock strikes 5 I close my laptop and stop working and put work out of my mind. I devote every minute of the evening to my wife and son. I am a night owl so as soon as they go to bed I dive into the DIY research.
I plan to do this until I am not longer physically able to take care of myself. When I reach the point where I can no longer walk or move my hands it is pretty much game over.
Kevin: Ben, take care and best of luck to you.
Ben: Thank you.