Wednesday, May 16, 2007


It's almost impossible to find statistics about success/failure rates on the MP. I have read elsewhere that as many as 3500 people are registered at the website as having started the MP. I also read that the washout rate is 50% because people have a great deal of difficulty with the "herxing." Also, according to the website, many people's intolerable herxing is due to the fact that they make modifications to the protocol, usually in the form of not following the dietary or sunlight requirements, or taking medications or supplements that are contraindicated, or even not taking the prescribed medications correctly.

I think that's perilously close to blaming the victim. If people are failing for those reasons, it's because the research team at the website hasn't done a good enough job at the website of explaining what the protocol is and how to do it. There's a ton of info there, and much of it is hard to digest. But it's not easy for newbies to figure it out. When you're sick, especially suffering from brain fog, that much information is overwhelming and intimidating. Plus it's just plain radical, and requires a significant paradigm-shift to "get" it.

They refuse to post statistics on the website. Sometimes they say that they don't have the manpower to process them, and are seeking grant funding to do that; sometimes they pontificate about how individual disease labels are irrelevant; sometimes they claim that there are hundreds of patients who don't post, and many doctors who participate (in a private forum or via telephone) who are treating hundreds of patients who don't post themselves. And sometimes they even suggest that newbies should quit asking questions like that and get started.

I think that's pretty outrageous. It is perfectly reasonable for someone who is sick, and who is facing a radical treatment that requires years of significant lifestyle changes, and is guaranteed to feel worse on the protocol before getting better, to ask a rational question like: "is there any non-anecdotal evidence that this protocol works for people who aren't diagnosed with sarcoidosis?" Because that's the disease that Dr. Marshall had, and the focus of all of his published research. He's claiming he was cured, which is wonderful, and also that his work on sarcoidosis applies to all of these other conditions. But when I show my doctor a paper called "Antibacterial Therapy Induces Remission in Sarcoidosis," I fully expect him to say, "what's that got to do with chronic fatigue?" If I could also say: ". . . and 350 people with CFS have made it into Phase 3 of the MP since 2002 and are in full remission," that would be significant.

The most recent statistics I've found are from May 2006, indicating that of 77 people with CFS on the MP, 40 have recovered. That's encouraging, but it's also over a year old and is supposed to be a "conservative" count. It's worth seeing though because, according to Dr. Marshall, "the 40%+ 'success rate' cited in my [June 2006] (Karolinska) presentation was regarded as exceptionally good by 'conventional medicine', where a 10% rate is regarded as 'success.' Only we ourselves have selected the objective of 100% success." (There is also a video embedded in the pdf showing the bacteria.)

I understand it's experimental. But the lack of up to date numbers is very discouraging. Most of the info available about patients with CFS on the MP is dated 2004 or 2005. I want to know if those people are better yet.

No comments: