tag:blogger.com,1999:blog-4477385342066275897.post2178139219681365590..comments2024-01-11T10:42:04.473+00:00Comments on Hawk/Handsaw: Lorenzo's Oil: not quite a miracle curePaul Wilsonhttp://www.blogger.com/profile/18101626906004768474noreply@blogger.comBlogger7125tag:blogger.com,1999:blog-4477385342066275897.post-49869380395014195042008-06-09T09:16:00.000+01:002008-06-09T09:16:00.000+01:00dr aust:Yes, I should have made clear that the roy...dr aust:<BR/><BR/>Yes, I should have made clear that the royalties were going to the Myelin Project, so thanks for pointing that out. As I said, I wasn't accusing Cristina Odone of anything dodgy, but if you were an alt med loon that's exactly the sort of apparent conflict of interest you would jump on in order to discredit Odone's piece.<BR/><BR/>I should also say that I wasn't criticising the research. It's clearly a situation in which the ideal of a double-blind, randomised, placebo-controlled trial is going to be impossible to realise. The point was only that given the current state of the evidence, it isn't really clear how much Lorenzo's Oil helps as compared to the reduced fat diet. While the oil certainly seems to be useful, it isn't the miracle cure you might imagine it is from reading the press.<BR/><BR/>As always, thanks for the comments and links: I always learn something from them.Paul Wilsonhttps://www.blogger.com/profile/18101626906004768474noreply@blogger.comtag:blogger.com,1999:blog-4477385342066275897.post-69367137441518441462008-06-07T20:51:00.000+01:002008-06-07T20:51:00.000+01:00Yes, interesting to wonder what the spin would hav...Yes, interesting to wonder what the spin would have been, Paul. <BR/><BR/>BTW, the Lorenzo's Oil paper makes clear (in the end under "Conflict of Interests") that Augusto Odone has signed all the product royalties he gets over to the Myelin Project, which is a charitable foundation he and others set up to fund research into demyelinating diseases and to help sufferers and their families. So he doesn't make any money out of it personally. <BR/><BR/>I think the point of the study design is that the prognosis is so bad for the "at risk" kids (judged as being that way by the fact that the plasma C24 lipid assay shows their levels are already high) that their only real therapeutic option is bone marrow (i.e. stem cell) transplant. But finding donors for that would likely be a problem, so the longer the boys can be kept "asymptomatic" the better. Odone co-authored the paper (and some others) with the world authority on the disease and its treatment (the late Hugo Moser), so it is a model of how you should do it, really. You could contrast it with some of the appalling quack therapies being peddled for autism. <BR/><BR/>There is an interesting obit for Hugo Moser, who was fictionalised as the Peter Ustinov character in the <I>Lorenzo's Oil</I> film, and who died just last year, in the <I>Guardian</I> <A HREF="www.guardian.co.uk/news/2007/feb/21/guardianobituaries.obituaries" REL="nofollow">here</A>. The obit is part-written by Augusto Odone, who talks quite touchingly about his and Moser's real-life relationship and how it was portrayed in the film.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4477385342066275897.post-12315666915604950552008-06-06T10:06:00.000+01:002008-06-06T10:06:00.000+01:00It's also interesting that in the piece about Lore...It's also interesting that in the piece about Lorenzo's Oil that dr aust linked to, Cristina Odone is apparently advocating the use of a medicine, the patent of which is held by her father. I'm emphatically not accusing Cristina of anything dodgy here. There is, after all, some evidence that the oil might do something. But can you imagine the uproar if the column had been about, say, vaccination?Paul Wilsonhttps://www.blogger.com/profile/18101626906004768474noreply@blogger.comtag:blogger.com,1999:blog-4477385342066275897.post-65102781400901828632008-06-06T10:00:00.000+01:002008-06-06T10:00:00.000+01:00dr austThanks for those links. It is, as you say, ...dr aust<BR/><BR/>Thanks for those links. It is, as you say, 'meat and drink to sundry Alt loons'.<BR/><BR/>Interesting also to see that Cristina Odone has a relatively sane attitude towards science. Especially as she seems so totally bonkers on the Catholic advocacy front.Paul Wilsonhttps://www.blogger.com/profile/18101626906004768474noreply@blogger.comtag:blogger.com,1999:blog-4477385342066275897.post-85520581465100971642008-06-05T21:06:00.000+01:002008-06-05T21:06:00.000+01:00Yes. I only realised Cristina Odone was related to...Yes. I only realised Cristina Odone was related to <I>those</I> Odones when she <A HREF="http://www.guardian.co.uk/commentisfree/2006/may/28/comment.theobserver1" REL="nofollow"> wrote something</A> in her <I>Observer</I> column that told the story in a way that cast the “blinkered scientists” rather overtly as the bad guys. I wrote the <I>Observer</I> an annoyed letter at the time (which they didn't print) because as written it was (i) wrong and (ii) meat and drink to sundry Alt Loons. You will note they had to print a somewhat shamefaced correction about the doctors she was dissing.<BR/><BR/>The Odone parents’ achievement with the oil was definitely a considerable one, but the film was fairly clearly “Hollywood-ed Up” to highlight the “against all odds and the vehement opposition of hidebound experts” narrative. Having said that, though, Cristina Odone is pretty sane about medicine, science and scientists, certainly by the standards of national newspaper columnists. For instance, you can see her defending the reputation of the late Sir Richard Doll <A HREF="http://www.guardian.co.uk/commentisfree/2006/dec/10/comment.science" REL="nofollow">here</A> (where critics on the thread include tiresome perennial blog-troll uber-idiot John Stone of JABS, aka “Pluralist”), and talking about MMR <A HREF="http://observer.guardian.co.uk/comment/story/0,6903,1158647,00.html" REL="nofollow">here</A>.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4477385342066275897.post-76665249807686041862008-06-05T16:53:00.000+01:002008-06-05T16:53:00.000+01:00Yes, I didn't know that either. The only thing I r...Yes, I didn't know that either. The only thing I remember about Cristina is related to an <A HREF="http://hawk-handsaw.blogspot.com/2007/06/catholic-tastes.html" REL="nofollow">early post</A> here, where she irritated me by claiming that the Catholic church has some sort of monopoly on "charity, compassion, self-sacrifice and modesty".<BR/><BR/>And I spelled her name wrong.Paul Wilsonhttps://www.blogger.com/profile/18101626906004768474noreply@blogger.comtag:blogger.com,1999:blog-4477385342066275897.post-12312038028439105132008-06-05T16:09:00.000+01:002008-06-05T16:09:00.000+01:00I never knew that Cristina Odone was related to Lo...I never knew that Cristina Odone was related to Lorenzo of 'Lorenzo's Oil'. Actually, I think the only thing I did know about Cristina was that she once had trouble editing her own entry on Wikipedia and had to send a copy of her passport to a Wikipedia Editor.Anonymousnoreply@blogger.com