When you are deliberately misstating the truth or saying something false, you are lying. So stop lying to try to bolster your point. I am tired of having to repeat my very simple proposition. And I am indeed extremely angry that you blind fanatics have taken this to the point of threatening a highly respected doctor's career.
I do not "work for" ALSUntangled. I volunteer my time and perspective as a patient and a little scientific insight from that perspective. And on my personal blog I am not representing anyone but myself. I do not know how to make that any more plain. However, you seem intent on illogical conflation so you can lay blame rather than admit gullibility. Richard Bedlack is not my employer and has no control over my actions other than to make a request of a colleague.
My description of my status at TDI was purely for clarity, so stop trying to demean me that way, Laurie. I have spent considerable time and effort learning the biology and science of ALS and am able to speak competently on the subject in academic circles. So yes, my knowledge is far superior to almost all other PALS. I make no bones about it but when constantly challenged by those with little to no comprehension I will defend myself.
I made an initial assessment based on all available facts. I suggest you consult a dictionary for the meaning of the word since you obviously do not know the proper definition. I am getting tired of having to repeat myself. And I am frankly very angry over the baseless attacks on Bedlack which have forced him to involve lawyers.
You may believe it works for you. I have no doubt you firmly believe that and was never arguing that point. However, placebo effect is a very real and strong factor, especially in ALS. I did everything in my personal investigation except contact the owner. What I found in my investigation was significant enough. The protein/antibody (it's identified as both on the website) against which the substance is supposed to work DOES NOT EXIST. There is no mention of it or RCH4 in any published scientific literature. The identities of the "scientific team" supposedly behind the development of the substance are nowhere to be found. The few scientific papers mentioned on the website are badly misinterpreted. The theory of ALS development given on the website is poorly conceived. The only identity of anyone involved in the development of the substance is a single individual with no pharmaceutical, medical, or scientific experience. So yes, naming him explicitly (not "mumbled") is extremely relevant.
Based on all these FACTS, and without any information which would clarify or refute, I made my assessment. I then was asked if I would take the time to do so for ALSUntangled since I already had done some work on the subject. The owner and patients using the product were given multiple opportunities to supply factual information which would counter my initial assessment. Instead of information, I was given hostility, accusations, and stories which were insisted be taken on nothing but faith. All of this active and fervent obfuscation only reinforce my suspicion that something is being deliberately hidden.
Therefore, because of the active and ongoing deceipt (especially the nonsense claim of losing "charitable funding"), I called it a scam in order to warn PALS away from this dangerous and dubious-at-best project. People are free to do as they choose and I really would have never given this another thought except for the constant attack campaign waged by the disciples.
Bottom line: I made a multi-disciplinary educated judgment based on all available facts. When challenged, I asked for facts which would change the judgment. Instead, it was demanded that I take everything on nothing but faith. That's not how it works, folks. And I don't care what any of you claim to have provided anyone else. Until that other person either shares that information or is in a position to competently evaluate and share that evaluation, my factual assessment remains. Period. End of story.
Put up or shut up.
I don't like all this vitriol from Eric Valor. Calling PALS liars is not correct behavior for someone who purports to represent the interests of PALS. I am a mother and grandmother who has ALS. I am taking RCH4 and, this I know to be true, is that it has worked for me. I am not a liar. If Richard Bedlack asked you Eric to take the word scam out of your blog then you should have done it. Even if it is your own personal view, you are still working for ALSUntangled and you are their representative. You are not coming across in a very good light. Just calm down and try to see this from our perspective. You seem to be very angry to be challenged and all this hatred for someone who is a very kind and noble gentleman is totally uncalled for.