1eye wrote:"The body" if that is what we are still talking about, certainly isn't basic or simple. Nor are most people. I have found many of them to be fairly logical, and fairly capable, even when it comes to understanding the complex.
I think the people on this forum are well qualified to understand and to act on the information they encounter here. No anonymous net denizen can stop that. If they want to do so, let them do it in public and stop all of this camouflaged gossip.
The difference is that doctors go through years of training to learn (hopefully) which information is/is not reliable, how data is interpreted, ...etc (again, we can't summarize YEARS in a few posts).
Here are three studies we have pored over in the last few weeks, what do you think of them? Reliable? The first two seem to have contradictory findings, what do we make of that?
Zamboni parenchyma hyperperfusion study:
Cece wrote:BNAC's conclusion that CCSVI does not cause MS has been controversial around here, to say the least.
The specificity and sensitivity explanation is informative.
It's helpful to know about the 80% mark. Also helpful to know that they checked for inter-rater reliability and that at 89% it was reasonably high but not 100%.
I looked up the zamboni criteria again, thinking #5 might be the deep cerebral veins reflux that has been dropped (there are now 4 Zamboni criteria after the consensus at the ISNVD conference), but no! That one is #2. #5 is the CSA of the IJV being greater when upright than when supine. #4 is flow not detectable in the IJVs or verts both upright and supine.
(If there is no flow at all, then is there no reflux? And if the theory is that reflux leads to MS, no flow at all could lead to hypoxia and slowed removal of wastes and insufficient cerebral glucose but not reflux and therefore contribute to other neurological diseases instead? SPECULATION ONLY since #4 was found to be more common in other neurological diseases than in MS.)
You did a great analysis, willowford, I hope you stick around.
I am looking forward to research studies done using plethysmography instead of doppler. Plethysmography seems simpler and more reproducible.
bluesky63 wrote: Willowford, I am curious how you envision the groups you label "patients" and "doctors." Do you have some distinct qualities you have ascribed to each of them to be able to put them in separate groups?
Instead of two groups, I see overlapping circles. Many "patients" have a professional background in science, research, statistics, medicine, etc. that equals or exceeds many "doctors."
And of course, many "patients" do not have such a background. But even without adequate information, "patients" have the ultimate responsibility for making their own choices and living with the consequences, and they deserve to have the most appropriate support in making that decision.
I would suggest that the most effective way to accomplish this depends on several factors: creating decent research in the first place, the accuracy of the research, disseminating the research results, evaluating the facilities, disseminating information about the facilities, evaluating the interventions and follow-up, and disseminating that information -- you get the picture.
But to me personally, with all that bundle of info, the absolutely most critical piece, if you are genuinely trying to help an individual at the point of making a life-changing decision, is this question: How do individuals make their health care decisions?
That is what you really are trying to find out. Is that why you're here, behind the scenes, as you said?
I personally find it extremely difficult to gather meaningful evidence on which to make any health care decision -- with my own specific background, I do not trust ANY data, period. I am cynical, and I believe ANYTHING can be designed and manipulated for any reason, positive or negative. So I do my own personal investigating, and I use a multitude of sources, and ultimately, after family and medical input, make a decision. It's a slow process.
Willowford, I applaud your earnest intent, your instinct to dive right in, and your use of the available technology to do on-the-spot research for yourself without waiting for secondhand info about "patients," or for some other expert to tell you what "patients" do. You are going directly to the source and finding out, directly, hands-on, what is happening.
This is precisely what is happening everywhere. People go straight to the available sources. And they see what makes sense, what seems ridiculous, what they want to throw away, what they will keep.
It's the people who do NOT have access to more information who have a harder time making informed decisions. And many people are not used to evaluating information. They could use a campaign, geared toward various decision-making styles. Everyone would benefit from that! Right now it can be chaos. But I believe it will be OK. It *will* settle down. It's a learning curve.
There is a large population of people with MS who have access to the Internet and are able to find reasonably well-rounded information about most treatment approaches. But a huge part of the MS population relies on their own personal physician and the info put out by various MS societies.
Again, kudos for trying, and use the search to see that there have been lots of interesting discussions here before. So, do you fish?
Cece wrote:willowford, what do you make of the concept of patient advocates?
The doctors themselves (Dr. Dake, Dr. Sclafani, and many others) learned of CCSVI when patients brought the information to them.
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