Cort, this is a great blog. I am very impressed with this one. It is well-written. It reveals the obstacles, medical research system mismatched to a multi-system syndrome.
You started it with the main message in the first paragraph.
I see some of the thoughts come from Newsweek, but you do add some of the thoughts of how this problem affects CFS and the response to that.
From "Lorenzo's Oil":
Lorenzo's mom: "Our son has complied with this diet yet his levels of his saturated C24 and C26 have risen for two months."
Another parent in the audience: "That's exactly what happened to Jay Bird."
Lorenzo's Mom: "Perhaps, before talking about cook books, we should ask ourselves if the diet is working at all."
Another mom: "Damn right we should."
ALD patient group leader: "This is not the way we do things here."
Lorenzo's Father: "Excuse me, there are two families with this paradox, maybe there are more."
Lorenzo's Mom: "Shouldn't we open it for discussion?"
Another parent: "My boy's levels are rising."
Lorenzo's Father: "Now three families. Maybe we can have a show of hands and maybe we will see how many families there are."
ALD patient group leader: "You don't understand, this is a formal pilot study. It has to run the full 6 months. We're not scientists. We don't take it upon ourselves to interpret experiments. That's the solemn responsibility of the doctors."
Another parent: "Come on Ellard, let's at least have a show of hands."
Leader's wife: "No, no, that would be misleading. Now the medical folks call this kind of evidence 'anecdotal'."
Another parent: "What's wrong with a show of hands?"
Leader's wife: "It wouldn't have any meaning."
Recipe book lady: "Excuse me, may I say something. The only way doctors can get useful results is a strict protocol and statistical samples in a control group."
Leader: "And a proper time frame. Doctors have to be very careful. Clinical trials must undergo a tremendous amount of scrutiny."
Leaders wife: "This is the way medical science works. That's the only way scientists can get the information that they need."
Lorenzo's Mom: "So what you're saying is our children are in the service of medical science. How very foolish of me, I always assumed the medical science was in the service of the sufferer."
Leader's wife: "Yes, thank you. Now I think it's time to get back to our agenda."
Lorenzo's Mom: "Why? So we can discuss further salvaging our marriages and managing our grief? What about the children? No one here is discussing the children."
The Lorenzos later set up The Myelin Project, for research in many illnesses. The approach is different: To attain its objectives, The Myelin Project relies on three major strategies: prompting researchers to work as a team and coordinating their research efforts, promoting interaction between researchers and laypeople, and rapid financing of practically oriented experiments.
Tina