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 Post subject: Re: MS/Infection
PostPosted: Mon Oct 02, 2006 10:22 pm 
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Bromley wrote:
Anecdote wrote:
Do you want to know why Stratton, Sriram and David refer to "A small subset"? It is because of a need to actually get into print in the first place. David did a small study of local people he treated who he saw regularly:

Seven out of ten people responded to treatment, two out of ten were doubtful as to whether they even took the antibiotics. That is quite a large subset to my mind. It was about eighteen months ago.

The first quote strikes me as bad science - or at least not having the courage of your convictions. If the authors think that Cpn is the cause in all cases of MS - then say it.

The second quote is odd. Basically, if people don't respond to a treatment say that the people didn't follow the protocol. Would Biogen get away with this to explain why some had seen no benefit on a treatment trial?

With respect to the first quote, it may have nothing to do with "good vs. bad" science at all. In order to get a paper published, it usually has to pass through the peer review process. Since the study was so small, it may have been a requirement of one of the reviewers that the phrase "a small subset" be added to the paper. It may have nothing to do the original authors having "the courage of their convictions." Of course, there is always a choice and sometimes compromises must be made. For example, it could be that their choice was to add the "small subset" language or not publish at all. In times like these, where the authors disagree with the reviewers, they could potentially appeal to the journal’s editor but it’s unlikely they would get very far with such a small study.

With respect to the second quote, there could be another explanation. The study may have been placebo controlled and two of the patients reported that they could not tell if they were on placebo or the actual antibiotics. Another possibility is that they may have not noticed any perceptible differences in their physical condition while taking the antibiotics and therefore questioned whether they actually were on antibiotics at all.

NHE


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PostPosted: Tue Oct 03, 2006 4:21 am 
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I guess I qualify as a "scientist" since I did a research dissertation, though it was years ago!
Scientists, no matter what they "believe" about something, always must say what they know and no more. Until it is proven that 100% of MS is caused by Cpn (or anything else for that matter) they are required by their ethics and peer review to state "a subset," as they only know for certain a number of people improve, and they don't know why others don't-- whether non-compliant with treatment, or that there are multiple causal pathways, etc.

A specific doctor looking at his own patients may have a better idea of the compliance of certain patients with a protocol, as he knows these patients personally. Therefore, he has observational data for his "subset" which a large study may not have for patients who don't improve.

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On Wheldon/Stratton protocal since December '04 for non-MS Cpn: CFS/FMS
Ohio, USA
www.CPn Help.org


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PostPosted: Tue Oct 03, 2006 5:28 am 
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Hi NHE, as Jim has noted, the second quote refers to one person keeping a record of one small set of patients, no placebo involved. He phoned up one patient to ask if he wanted another prescription, since he was well overdue, he said no, because he has found the rest of the last lot down the back of the sofa, two months after he should have asked for a new script. Nothing more complicated than that.

As for the first quote, I have had first hand experience of how the peer review process works with the paper which started this thread. Good vs. bad science doesn't come into it. If you disregard all the recommendations of the reviewers, you don't get published.

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.


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PostPosted: Tue Oct 03, 2006 6:03 am 
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It seems for every "MS theory" there is always a down side because no one theory suits every person; thus my (and so many others') theory that MS is not just one disease.

When my daughter was diagnosed, I came across Lyme Disease symptoms by a fluke one day. I found myself repeating--over and over--Oh my god, oh my god! She had about 28 of the symptoms. LD has many of the same MS symptoms but can also have many other non-typical MS symptoms. When she discussed these with her neuro, they were either ignored or she was told it was in her head. Like MS, the LD diagnosis is strictly clinical (see FDA criteria). There is no definitive test. In addition to lyme infection, they have found 2 more bacterial co-infections.

My daughter is currently trying an "alternative" treatment, diagnosis strep infection. The treatment is natural. Her continued improvements are nothing short of dramatic. PLEASE don't tell me this is anecdotal...I will absolutely SCREAM!

But here is how I feel...if an MS patients takes an antibiotic and experiences improvement, dramatic or otherwise, what difference does it make what "germ" is being effected? The important thing is "It works"..and it usually works a hell of a lot better than any of the CRAB options!

I have invested hours into researching this hideous disease and the hideous medical/research communities into whose hands we put our very lives. I am totally unimpressed! Waiting for them to provide us with something really positive is nothing short of a pipe dream! I call it the "Enron" mentality--it is all about money as we all know.

I continue to pray every day for my child and all of you! I wholeheartedly agree with my daughter's most recent comment: "We do not just wake up one day with MS. Something (definitive) is going on here!"

God bless you all!!


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PostPosted: Tue Oct 03, 2006 6:11 am 
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Just to clarify-- scientists may have convictions about things personally, but when acting as scientists they can only state what is known. That is what science is about. They don't state their convictions when they are reporting or reviewing on the actual data available. This is not just about getting published or satisfying a peer review. Rather, peer reviewed publications look for such things as overstating a case or going beyond the data known as features of poor scientific thought. Stating convictions is bad science, and review committees (and dissertation committees!) will mark you for it.

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On Wheldon/Stratton protocal since December '04 for non-MS Cpn: CFS/FMS
Ohio, USA
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