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It may interest you to know that patient reports are used as evidence for using off label drugs. Treatment of CCSVI syndrome by balloon venoplasty is a novel use of an existing technique so the same logic may be used.
The whole paper is available : http://www.jmir.org/2011/1/e6/

Conclusions in summary:
Patient-reported outcomes, like those entered within PatientsLikeMe, offer a unique real-time approach to understand utilization and performance of treatments across many conditions. These patient-reported data can provide a new source of evidence about secondary uses and potentially identify targets for treatments to be studied systematically in traditional efficacy trials.

There are some open minds in the medical world, however rare in MS neuros.

MarkW

Mark,

You are on the mark. Patients Like Me founder, Jamie Heywood, has been able to predict ahead of published reports when a medication/procedure is working/not working for majority of patients due to the patients updating their responses to said treatment.

Unfortunately, there were attacks by a few that are constantly on that site directed at those that were looking into/receiving CCSVI treatment. So the patient database for PLM doesn't offer much data for CCSVI. Dr. Hubbard was originally using as a location too for his patients to update their data. After he saw the way both he and patients considering/having CCSVI were treated by a few, he disabled his account and didn't require his patients to use. Other than CCSVI, it is a good site to look at data/responses to DMDs, Tysabri, symptom management medications, alternative treatment, etc.

Beyond that and one other sites attempt to gather post procedure information, the majority of patient's history still remains in threads/blogs. In an age of technology, alot of data has been lost on CCSVI treated patients. Although, I think conclusion will still begin to be reached in the next year or so by collaborating doctors treating in this area.

MarkW wrote:Conclusions in summary: Patient-reported outcomes, like those entered within PatientsLikeMe, offer a unique real-time approach to understand utilization and performance of treatments across many conditions. These patient-reported data can provide a new source of evidence about secondary uses and potentially identify targets for treatments to be studied systematically in traditional efficacy trials.

Thanks for this Mark...I love the paper's conclusion and notes, "patient-reported data can provide a new source of evidence about secondary uses and potentially identify targets for treatments..."

Given that the authors of this paper are all paid employees and/or stockholders of PatientslikeMe, its conclusions could be viewed as less than objective.

Not saying that patient reported outcomes don't have value, just questioning the value of this paper in particular.

PatientslikeMe make their money by selling the data volunteered by its members to the highest bidder, most often Big Pharma and medical device manufacturers. They have a vested interest in finding their data valuable.

Personally, once I learned of the business model of the site, I canceled my membership…

dreddk, last winter I brought up self-selecting bias and got mocked by Lyon for it! (It's ok, Lyon, I have gotten over it by now, mostly.... ;) ) My thought at the time was that here at the CCSVI subforum we might be self-selecting, that we might be more likely to pursue CCSVI treatment because of how it rings true with our own symptoms, so the very people going for it are the ones who turn out to have it. It was a way to reconcile the Buffalo numbers with the anecdotal reports here, back when I thought the Buffalo numbers might be more meaningful than I think now.

Marc, same here. (Echo, echo.)

Coming back to add -- Mark, I just attended a neuro talk sponsored by the MS Society and Biogen. The neuro himself mentioned that he stratifies similar patients using their own anecdotes and treats accordingly. Apparently open-mindedness about anecdotes is applied selectively!

..

I hoped that someone would notice that neuros use 'mind altering drugs' on pwMS when these drugs are not registered for such a use (called of label prescribing). However the same neuros say pwMS cannot use 'off label' balloon venoplasty for de-stenosis. Now that seems fair to me.

MarkW

MarkW wrote:I hoped that someone would notice that neuros use 'mind altering drugs' on pwMS when these drugs are not registered for such a use (called of label prescribing). However the same neuros say pwMS cannot use 'off label' balloon venoplasty for de-stenosis. Now that seems fair to me.

It is absurd. We're used to anything goes when it comes to what they'll throw at us.