OT: Research on "Anonymous Online Board"

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Stella Blue
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OT: Research on "Anonymous Online Board"

Post by Stella Blue » June 13th, 2018, 9:02 pm

I just had my work computer "upgraded" to Windows 10 so lost all my bookmarks and had to run a search to find the board this morning. My search picked up this link that I found interesting: https://newsroom.heart.org/news/online- ... eview=adfb Three researchers studied the messages appearing on an unnamed ICD message board over a two-year period and concluded that 25% of the messages contained "inappropriate" advice. Basic idea is that doctors need to make sure their patients are not receiving inaccurate information outside the doctor/patient relationship. I haven't been able to find the report itself or figure out if this is the board they were studying but it is interesting to speculate. I can imagine our members' occasional lack of reverence for the medical profession might seem "inappropriate" to someone used to being on the other side of the stethoscope.

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mrag
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Re: OT: Research on "Anonymous Online Board"

Post by mrag » June 13th, 2018, 9:21 pm

I suspect for every doctor saying this, I could find another saying that. Is one of them "inappropriate?" And then what do they mean by inappropriate? Telling a person to add some salt to their diet, telling someone that posts that they are having chest pains to take a Xanax and get 8 hours of sleep?

I guess we need to read the article, but I don't believe anyone here is giving "medical advice" let alone inappropriate advice. However, this is a good reminder to always add a disclaimer: not a medical professional, no charge for replying, see your own doctor.
"The greatest enemy of knowledge is not ignorance, it is the illusion of knowledge" S Hawking

Leedur
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Re: OT: Research on "Anonymous Online Board"

Post by Leedur » June 13th, 2018, 9:32 pm

Unless I've missed it, haven't noticed many here giving a lot advice like you would expect from a doctor. Most have shared personal experiences which should help anyone with a new ICD. Medical professionals still control our device settings and write the prescriptions....not online groups. If a member is having unusual symptoms, someone here always advises them to seek medical help.

This site would serve more to ease the fears of a new ICD recipient. After taking a variety of OTC vitamins, etc. most of my life, I gave that up 3 years ago for fear something might interact with my prescriptions. The body is just too complicated for anyone to "self medicate". Just my opinion.

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Ozchrissy
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Re: OT: Research on "Anonymous Online Board"

Post by Ozchrissy » June 14th, 2018, 2:49 am

I have never seen anyone on here directly give medical advice. They may give their own experiences, or pass on information found on another internet site, and discuss issues here, but I have never seen anyone tell anyone else this is what they have to do. However I have seen heaps of posts where people stress this is their PERSONAL experience and that they should go and see their own doctor. Also I have seen many posts where members are encouraged to go to the ER or their Doctors.

If it wasn't for this board, I would never have started on Entresto, Robbo first mentioned it, which has been brilliant for me and I knew about it and made enquiries long before it was even introduced here in Australia. As a result I was included in the phasing in trial, prior to it being put on our subsidised system. I would not have had my valve replacement, as I heard about the Mitra Clip on here and it was because I was asking about that, when I was offered the full valve. There have been many other times where I have been led to ask my doctors about things, which have turned out to be very beneficial to me. The valve alone is the reason I am still around, and the Entresto has increased my quality of life.

The support given on here, and the opportunity to talk over our issues and concerns with others who are also going through the same thing, is thsure major benefit of this group.

I would love to know who the researchers are and their background. What is their agenda. I know over here we really have a surge of consumer reps in all aspects of our medical care, and our opinions are valued. Are the researchers worried that some of our members may learn too much and start asking too many questions of them. It is the Doctors that people on here will go to if they have a query and need new meds. I don't know anyone on here who can write a prescription or organize a test or surgery. Obviously we may be a threat to their status quo.

I think most run of the mill Doctors don't like patients who question them about THEIR treatment. I have found that the more senior and experienced the Doctor, the more he will encourage me to do my research, to ask the questions.
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ROBO Pop
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Re: OT: Research on "Anonymous Online Board"

Post by ROBO Pop » June 14th, 2018, 9:28 am

You guys are assuming they're speaking about this board.
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Rough Rider
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Re: OT: Research on "Anonymous Online Board"

Post by Rough Rider » June 14th, 2018, 10:09 am

To Robbo-If this board or another, how would that change anything?

Members here should not dispense medical "advice." Unless maybe: they clearly state they are not licensed to give medical advice, they are not getting paid for giving any advice, they state see your own doctor. I mean really, who would accept and act on any "medical advice" they got from here anyway? Oh I know, those wearing hats that say Medical Advice Given Away for free. Has anyone spoken to Leah recently?

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TruckerRon
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Re: OT: Research on "Anonymous Online Board"

Post by TruckerRon » June 14th, 2018, 10:48 am

Y'all do know that part of being a moderator is watching for stuff that could get the board in trouble? I'm not just here to referee fights or stop political debates. I'm even watching for people trying to get us to buy products or sign up for a multi-level marketing opportunity.

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ROBO Pop
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Re: OT: Research on "Anonymous Online Board"

Post by ROBO Pop » June 14th, 2018, 11:21 am

Rough Ride ~ it's clear reading comprehension is not a strength since you didn't even get my name right. I hate having to do this, but let me spell it out...

In reading others responses to this thread, and I guess I should spell out by others I mean those who posted before I did, it is obvious they are interpreting "Anonymous Online Board" as being the ICD Support Group and are becoming defensive, explaining why we are not at fault, or cannot be the guilty party. I've seen other boards where the advice actually delves into medical diagnosis and crosses the line frequently, and frankly would be surprised if they were in error only 25% of the time. I was merely trying to point out that people shouldn't assume they are referring to this board...and as TruckerRex said he monitors for appropriateness on threads.
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ROBO Pop
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Re: OT: Research on "Anonymous Online Board"

Post by ROBO Pop » June 14th, 2018, 11:37 am

I think this is much ado about nothing.

How many studies have we seen that contradict previous studies such as the recent one about mammograms? Or what about the safety of caffeine, and think of it like this...We all know that ICD manufacturers give advice to ask for a pat down in stead of walking through the airport scanners, so when we say nah it's no big deal, it's safe these researchers are likely to interpret that as an inappropriate response. Or how about the infamous don't raise your arm after implant. Now frankly my new EP says that one is nonsense. Come to think of it, I think our accuracy rate is better than the medical communities. God it pains me ... Mrag is right
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TruckerRon
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Re: OT: Research on "Anonymous Online Board"

Post by TruckerRon » June 14th, 2018, 1:14 pm

ROBO Pop wrote:
June 14th, 2018, 11:37 am
I think this is much ado about nothing.

How many studies have we seen that contradict previous studies such as the recent one about mammograms? Or what about the safety of caffeine, and think of it like this...We all know that ICD manufacturers give advice to ask for a pat down in stead of walking through the airport scanners, so when we say nah it's no big deal, it's safe these researchers are likely to interpret that as an inappropriate response. Or how about the infamous don't raise your arm after implant. Now frankly my new EP says that one is nonsense. Come to think of it, I think our accuracy rate is better than the medical communities. God it pains me ... Mrag is right
I think much of what the device manufacturers and our doctors tell us is inspired by fear... not the fear of hurting us or even losing us as a source of income, but the fear of [gasp!] lawsuits! To quote Douglas Adams:
"It seemed to me," said Wonko the Sane, "that any civilization that had so far lost its head as to need to include a set of detailed instructions for use in a package of toothpicks, was no longer a civilization in which I could live and stay sane." - So Long, and Thanks for All the Fish
And then there's this:

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TruckerRon -- Received Minion I on 17 Sep 2009, Minion II on 26 Jan 2015

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ROBO Pop
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Re: OT: Research on "Anonymous Online Board"

Post by ROBO Pop » June 14th, 2018, 4:15 pm

now that was well said TruckerRon
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Colin Pearson
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Re: OT: Research on "Anonymous Online Board"

Post by Colin Pearson » June 14th, 2018, 4:35 pm

This is quite amusing as the docs themselves sometimes struggle to diagnose.

But when it comes to illness, there are two simple rules;

1, Never consult Dr. Google or any other kind of online Quackery.
2, Never take anything as gospel that any bloke off the internet says. It might be right for them but most probably not for you.

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ROBO Pop
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Re: OT: Research on "Anonymous Online Board"

Post by ROBO Pop » June 14th, 2018, 5:28 pm

I think this article on a popular diet drives home the point USA TODAY: Landmark Mediterranean diet study was flawed
Check out this story from USA TODAY: Landmark Mediterranean diet study was flawed

A major study published in the New England Journal of Medicine in 2013 linked a Mediterranean diet to heart health. But it didn't have an entirely random sample size, authors admit.

https://usat.ly/2sWntrg

I don't put much stock in surveys or even scientific studies
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