I am sorry I have not been posting recently. Part of the reason is that I have been working out a course of action concerning recent postings here by member ROBSUPERNOVA.
You will all be aware that Rob has posted extensively over the last few months about various drink formulas that he has developed which he believes can alleviate symptoms of AMN or that could lead to a cure.
Sara and I met Rob in April 2011 after he had been in touch with us concerning his investigations. We had hoped to organise a follow-up meeting with a scientist at which Rob’s theories could be examined more closely, but we were not able to make this happen.
I believe Rob is an honourable man who has developed his ideas in good faith and I believe he genuinely wishes to improve the lives of all suffering from AMN. However, I was concerned that his proposed remedies might not be useful or might actually be harmful. Despite this, I recognise that occasionally an amateur scientist can come up with an idea that professional scientists may have missed, so I did not dismiss his ideas outright.
Rob began posting on AMN Easier without forewarning me. I had two main concerns with Rob’s ideas:
First, that he is raising expectations that AMN can be cured by consuming the substances he proposes. In particular, his approach appears to be based on the aim of reducing VLCFAs, whereas we now know that reducing VLCFAs doesn’t stop the progression of AMN. If it did, Lorenzo’s Oil would work. As a result, I believe AMN patients are being given false hope for a cure.
The second concern was that patients may suffer some ill-effects by taking the substances in the quantities he suggests.
Not being a scientist, I wanted to get some expert opinion on Rob’s claims and proposed treatment plans. I therefore consulted Dr Ian Duncan (Univ of Wisconsin), Dr Robin Lachmann at UCH in London and Prof. Aurora Pujol in Spain for their comments. (Rob had separately written to Ian about a related scientific experiment, and had copied me). These experts have long been associated with AMN in various capacities and are known to many patients through their attendance at several AMN Patient Days here in London.
Some of the comments from these scientists and clinicians include the following (I have deliberately not attributed them to any one person):
“This is a hypothesis and nothing more. I doubt green smoothies would be dangerous, but actually eating beef and lamb would be a much richer source of phytanic acid.”
“….Rob has lots of imagination, is making exaggerated claims and infers things that are obviously wrong. I am concerned specially by the ceramides story and phytanic acid causing dyshidrosis of his hand, accidentally exposed to it.” (Note from Chris: this comment about phytanic acid causing dyshidrosis of his hand was made by Rob himself in a separate but related email he sent to Ian Duncan, on which I was copied).
“Decreasing VLCFA in the blood has the same effect as Lorenzo's oil, but it does not halt ALD progression.”
“I think he should try and persuade someone to test his hypotheses experimentally rather than contact patients directly.”
Having consulted with these leading experts I have concluded that the advice and therapies proposed by Rob are not at the current time in the best interests of AMN patients. I have therefore reluctantly decided to restrict Rob from the AMN Easier site.
I have been in touch with Rob and have relayed all of the above to him. He has apologised but reiterates his desire to help AMN patients.
Finally, I recognise that some members of the site might not agree with the action I have taken and may wish to continue receiving Rob’s advice and to try his approaches. Please contact me through the mail facility on AMN Easier and I can put you in email contact with Rob. I have not posted Rob’s email address here to preserve his privacy.
With best wishes,