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What do you think of a neutral interactive "talk" on interpreting evidence for patients with MS without research background to aid in making decisions about health? (READ BELOW BEFORE RESPONDING PLEASE)

Might be helpful to me/my family.
Useless/ unhelpful (please post reasons/critiques in thread)
No votes
I already have university/college training in research.
Need more info about this idea to determine if it would help me (please try to post any questions you may have on forum as well).
Your post was too long. I lost interest midway, so I don't know.
Total votes: 11

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Post by willowford » Wed Apr 27, 2011 7:57 pm

Hi everyone,
Grad student here...(Never involved in CCSVI or any medication research). I have always been a strong proponent of solid research and established evidence guiding clinical care (in any condition) bc I have witnessed and read about how failing to properly interpret research/evidence can lead to detrimental effects on patients.

I have been looking into the views/forums of MS community and media reports on CCSVI. Most of you will agree that this issue has become controversial bc sometimes doctors, patients and media misrepresent the true results out there and sometimes, studies are misinterpreted. e.g., some conclude that CCSVI has already been established as a full "cure" and others have concluded that CCSVI has no basis/is not the answer/is too risky without having all the facts right. Both are clearly incorrect. Part of the issue is that it is difficult for us to determine what is/is not reliable, and how to interpret things we read (I'll be the first to admit that, since it took several years of training to begin to accurately appraise studies without letting my personal views get in the way).

I have been pondering the CCSVI issue for weeks. I would like to gauge your interests/opinions on a live interactive "talk" intended for MS patients (and perhaps other conditions)... THE GOALS OF THE "TALK" BEING: (1) scientific evidence - what/why...etc., (2) what to look for when reading studies or article or personal stories, (3) how to detect reliable info especially about new potential treatments/CCSVI, (4) how to avoid common pitfalls in interpretation, (5) how to easily put together the wealth of info out there to formulate ur own decision about treatment/etc.

All this may sound simple enough to read/interpret studies/articles, but ask any scientist, there's sooo much to it that we don't know till you get into it; even docs misinterpret their work occasionally!

The goal is to give MS patients the weapon of reliable/accurate interpretation/critique of all info to help them make treatment/other decisions, without having to take a dozen courses in scientific research (let's face it, who has the time to do this unless they're nuts like me ;) and it's their career goal). This would be interactive, using real-life examples related to MS or other historical examples (not the boring lectures scientists have had to sit through)

WHAT THIS TALK WILL NOT BE ABOUT: (1) anyone's personal opinions (presenter's, docs, other patients, media...etc.) because that is the opposite of objective science, (2) telling ppl what to do for their treatments (I believe we all have absolute right over our bodies and have to make our own choices - but must be able to get accurate info), (3) changing people's opinions about anything related to their health - only looking at how knowledge about things is obtained and what it means.

I thought this would be ideal for MS patients who are always trying to be up to date on their condition... more so than any other patient groups I've met... the only issue being that there's way too much info/misinfo out there about MS nowadays.

I believe that all people have the right to accurate information when it comes to their care and treatment. If they don't trust their docs or societies for now, then they deserve a way to explore the topics reliably on their own. So I thought it would help make them more comfortable with this, without having to spend years in a research program!

Obviously, the details are still to be worked out. But for now, PLEASE PLEASE PLEASE reply with your opinions in the thread... You are the first beings out there that I told about this idea - cause ultimately, it's your opinion that matters in this issue. Please give any constructive feedback, either way, and preferably anything about this idea that needs improvement/change or what else you may find helpful. (please also vote on the poll if you don't mind).

(so sorry for the length of this, but please read before responding to avoid misunderstanding of what this is about)


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Post by Cece » Wed Apr 27, 2011 8:14 pm

Welcome, willowford.

Rather than a talk, which might require being online at a set time (which is difficult as a mother and as a pwMS, I grab time as I can), why not post some of what you know right here in this thread? Or film a presentation and put it up on youtube? I think you might get further with low-commitment ideas such as these ones (commitment on our part, that is, of the time it would take to tune in for a talk and being there at the right scheduled time).

What you've said sounds interesting so far.

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Post by civickiller » Wed Apr 27, 2011 9:44 pm

I agree with cece, a talk would be hard to organize for everyone where as posting on a forum is easier for everyone. But I think it is a good idea, I would like to participate in this

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Post by Shueywho » Thu Apr 28, 2011 8:51 am

Is this idea kinda like a for research? If that's the case I love it.

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Post by willowford » Thu Apr 28, 2011 9:12 pm

Thank you for your helpful comments. And thanks to those who voted.
Cece, thank you for the welcome. Both you and civickiller are right - whatever this turns into, it should be more accessible to everyone regardless of their schedules. I was actually thinking of someone with more authority, who has been in scientific field for years - we have a med professor who has devoted his life and has pioneered "evidence-based medicine" that is taking over the field! Posting stuff in writing will be like any other blog... using visual aids and examples from medicine in history and MS in a video format I would think will be more effective.
Shueywho, thanks for the site - I had never heard of it but it seems very interesting after I checked it out! The difference with what I'm thinking of is that the while the site gives accurate info (from what I saw), their explanations are still not based on evidence - they don't give us the numbers/ studies/evidence. They just state things. Giving people the tools to interpret basic information on their own would be truly practical in my opinion.

Any further comments/votes would be greatly appreciated as I try to figure out! Thanks again!

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