Soon after ALS researcher from Milan, Italy, Dr Francesco Pagnini, and I posted our THE HEALERS campaign ALS scientific research dietary and health online survey, something very interesting happened. I went to share this opportunity with my fellow members of the ALS Forums, and a screen popped up saying that I was banned forever with no reason given. I immediately tweeted and sent an email message to ALS Forums saying that I had followed the rules, was saddened by the ban and that I wanted an explanation. The next day, I received an email from David Wilson at ALS Forums stating that he didn’t know what had happened and said to not post non-authoritative links or promote cures.
Over the next several weeks, I sent David Wilson about four email messages asking if it would be appropriate to post my scientific ALS survey link, because I wanted to follow the rules. His failure to respond to any of my simple polite queries left me with a gut feeling that the moderators of ALS Forums might have something against my research, which is investigating the ALS Association and the Muscular Association’s high sugar diet recommendations, among other things. The events that followed have me believing that they don’t like what I believe and that for which I stand. My comments in this opinion essay are not about David Wilson, unless he was involved in the choice to ban me for life and to not communicate about it.
Eventually, after waiting and waiting for a reply which clearly was not going to come, I came up with the idea of making a post in the ALS Forums and simply provide my email address so that anyone interested in participating in THE HEALERS campaign scientific survey could email me for the link. Seems reasonable, right? Well, some people replied with suspicious or aggressive comments, but if you go to the thread in which I participated before the ALS Forums banned me for life, you will see how polite I was. I was simply answering their suspicious questions in a factual way. I wasn’t even trying to argue for my beliefs. I feel sad about the behavior of the ALS Forums moderators, and I believe I deserve respect from them. I would at least appreciate them having the courage to say that they don’t want me there even though I abided by their rules.
I believe that I am being discriminated against because they do not respect my beliefs and don’t want me in the forum. Myself and others have e-mailed and tweeted them simply asking them to provide one piece of evidence for banning me for life. People who have simply asked the question on the message board have had their question disappear because of moderator decision. I am a man of integrity deserving some communication with a reason for this. I have never promoted my beliefs or had any arguments on the forum. I was only inviting participation in my scientific research. I was attempting to honestly answer their questions to show who I really am. You will see that the last question was a woman asking why I believe I have lived 18 years. The two sentence answer I wrote disappeared and then I was banned. I told them what I tell most people, that you’ll have to wait for the book for the whole story of what I believe and then I listed my honest and true beliefs in a simple one sentence list. I wasn’t trying to market a book or sell a cure. There is no book and there is no cure. When I do write a book, it will not be a confident “how to” book but rather an autobiography sharing my honest experiences and beliefs, and I will not be looking to the ALS community for customers.
I believe that I had a right to honestly answer that question with a simple list which was something like, “detoxification, pure environment, disciplined diet, intensive psychoanalytic work, training my mind with metaphysical studies…” That’s it. I do not see any violation of the rules. It is clear that they have a prejudice and judgment of me. I am a man of integrity. I want people to be aware of how the ALS Forums operates. It is not right. They ask for public donations and say that the forum is available to all who follow the rules.
I do understand that ALS Forums claim that detoxification is a scam. I wasn’t mentioning it to promote it; instead, I was only answering a question about what I believe about my own case to try to answer a group of people that greeted me with suspicion and aggression. Many respected medical professionals also believe that detoxification is a legitimate strategy for neurological conditions. Yet, I wasn’t making an argument about what I believe for other people.
ALS Forums doesn’t have one remote piece of evidence that I behaved in any way contrary to their posted rules. How can an organization run without any willingness to communicate? I am a human being with a heart and a member of the ALS community. Why in the world would one or more of their moderators, who happen to have ALS themselves, discriminate against me in such a harsh fashion with refusal to even communicate? I believe that they are using an unhealthy strategy to ban me with no valid reason and then to refuse to communicate with me and others who are simply requesting the truth regarding their behavior towards me.
I have written this essay so that there will be a public record of what has happened, because I have seen it happen before where this forum has been used to spread negative gossip about someone with ALS who is using holistic principles in their healing journey. Then, that person has no way to enter the conversation in which falsehoods are being proclaimed about them. At the same time, when people Google that person’s name, the disparaging thread is there.
Finally, I feel sad for these moderators with ALS who are using such a humanly disconnected strategy with a fellow human being who has only communicated with kindness. ALS is a disease that often makes people feel more disconnected. I live my life on the principle of living in the most connected way. I behave in the same way I want my nervous system to behave, to be connected. Why are these people afraid to have me in their forum, following the rules? Why are they afraid to even communicate with me? Nothing is ever really solved in a humane way when human beings choose strategies of avoidance and hiding. May peace be upon them.
With love and gratitude,
Craig Oster, PhD