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JazzysMom

New member
This thought popped into my head during a slightly heated thread. Many of us share our experiences, opinions & thoughts on topics. Usually when we do its from our own trials, tribulations & obstacles. Some use their education &/or work experience in addition to their personal connection to CF. Every response should be taken as food for thought & not gosple. Experiences & opinions vary. Just like results of meds or reactions vary. Adjustments to ones way of doing things to fit a persons lifestyle or other needs isnt always the best choice if going by CFF guidelines or infection control etc. This doesnt make it "wrong" nor does it make the "best choice". What it does make it is the persons or families decision. Certain topics I tend to lean toward certain peoples knowledge because they have "experience/knowledge/education" etc such as meds. I connect that with Amy because of her Career. She isnt the only one that can be helpful nor do I take her word as the only word or the 100% correct word. Again so many variables come into play. This idea goes along with actual health care as well as social/life issues such as adoption (I would lean to Allie on this topic) or trying to win a disability case (I lean towards Julie on this one). Just because I lean towards someone doesnt mean they are the only one who can help. These are all just examples & by no means should be taken for more than my opinion. Just as said any posts should be used as food for thought.....this also applies. I just want everyone to realize that we all have ways to contribute that will be of use to someone even if it isnt "by the book!" Sorry for the long post. I tried to word it so my thoughts came out without sounding rude!
 

anonymous

New member
What heated thread are you talking about? I don't really think anyone gives anyone else a hard time about giving advice. We know that the people who post here are not doctors so we know it's just from their experience that they post advice.
 

Ender

New member
what a wierd topic.

I dunno, regardless of education, background, whatever, you gotta come up with your own decisions and be informed...and that means even with your doctor. He wants to prescribe you something, great, but don't just take it blindly.

I take everyones info equally, and then decide what to do with it based on my knowledge and experience. I'm sure pretty much everyone does the same here ;P

I was thinking about supplements though when you wrote this. How many people actually take some of the supplements we post seriously? Yes they might not be FDA approved, or recommended to your doc, but does that make them any less effective.

I often wonder if people research alternative stuff as much as i do. I don't really see anyone posting ideas about new treatments etc that isn't directly from a doctor. To be honest, i feel kinda sad for people that don't give some of these things a try, because they can really make a difference. Then again, it's not my problem in the end. I just hope some people out there actually try and think outside the box sometimes.

kiel
 

anonymous

New member
I dont think I know what you're talking about. I think everyone gives added weight to certain posters opinions. I don't think people get upset (or rarely) when opinions are given. I think the problem arises when opinions are presented as facts...not opinions. Just my 2 cents.
 

thelizardqueen

New member
My opinion is that knowledge is power. Regardless of who gives it to you and how much knowledge you're getting. I find that I like the vast knowledge and opinions on this board, because it makes me think and consider things that I never would have. I would hate to see everyone have the same opinion on this board - regardless of whether they agree with me or not.
 

anonymous

New member
Melissa

Can you be more specific about what happened. Everyone posts opinions and it is great.

Yes, knowledge is power. Yes, what a weird topic.

No one is an expert on everything but we all have things to contribute.

What are you bothered about exactly?
 

julie

New member
I do understand what you are saying Melissa, althought I don't know what recent situation you are talking about. Although I'm not sure it matters to mention it or you might have yoursef in a situation like I got myself into a few months ago.

Just because someone doesn't have CF, doesn't mean they don't know what they are talking about. Just because someone hasn't taken a particular medication for a few years, doesn't mean their experiences are outdated/irrelevant/wrong.... I don't think it's a big issue on this forum. I've only seen those attitudes that Melissa was referring to come about on rare occasions. But I think what you posted mel, was good food for thought for all of us. Just keep an open mind, take what works for you and leave the rest.

That's my take on her post anyways
 

lightNlife

New member
That's why there's a disclaimer to read when you join the site. Nothing here is intended to replace or substitute for medical advice obtained from a medical professional.

Those of us who have any experience with CF in any way shape or form are uniquely qualified to offer our OPINION about a certain topic. You can choose to agree or disagree.

If anyone feels mislead by something you may have come across in the forum, I encourage you to reread the disclaimer.
 

Ratatosk

Administrator
Staff member
When I offer advice, I usually explain why -- either this worked for us, our doctor told us this because, drug or equipment product info says this. I think people for the most part do that. It's great to hear different opinions. What other people do when traveling, go to the clinic, treatment times....
 

anonymous

New member
LOL, Melissa.
Well I just want to make it clear that I am completely unqualified to offer any advice. That my opnions are just that - my opnions. That they are based on my experience (which is unique and could be completely different from anyone else's) and my readings (which might be incomplete and misunderstood, but I'll try to post links) and my values (which could be completely different from another posters).


I'm thinking that there are NO experts here - even those with degrees and such are just one in a million with that degree and there's probably disagreement within that million. (At least there's disagreement in any field that I've been in - how else could people come up with all those unique Ph.d. thesis?)

People asking for advice should just follow the old guideline "Take what you like and leave the rest."

People giving advice should give it like any other gift - just give it and let it go. Once you've given a gift it's not yours anymore it's the recepient's to do with as they wish.
 

Scarlett81

New member
Maybe you could be more specific on what you mean?

As for me, I take pieces from here and there and I do what feels right for me. There are people I have asked for advice on specific things-like this mornign I asked Amy a drug question, b/c its her speciality. But, I included everyone in the responses. Would I listen to Amy every single time-no offense Amy, its not personal, I'm just using you as an example-no. I wouldn't listen to anyone 100% of the time. But I think that's being smart-you have to go with your gut. At the same time, I like to gather several opinions to get an outsiders perspective and i think that's why forums are great. You'll get all types of different opinions.

It goes without saying-you can't listen to just one person as the 'voice of God' in life.


As far as listeing to opinions, there are no 'experts' here possibly. But are there any real experts in life? Everybody messes up. Even my cf doc, who I consider a definate expert-will tell me she doesn't know all the answers, and tells me to look elsewhere for my answers sometimes.

I give advice when I feel like I have something to say. But I never give advice thinking, I know everything about this topic, and everyone else is wrong. If I have experience with the issue I'll say something. Or if I just want to give a helping hand.

As for what I think you might be saying here-I have seem some pronounce their opinion as if it is 100% fact, and come across as if everyone else is dumb and ingnorant. But people like that learn their lesson usually. So, if that is what you are talking about-I hear you Melissa.
 
I

IG

Guest
Really I think some doctors aren't qualified to give the recommendations they do.
And I think some people despite being educated are as dumb as bricks.
But just goes to show that people who have the experience and education does not necessarily mean they should give out advice.

Ferdinand De Lesseps the man credited with creating the Suez Canal said 'When something is needed genius comes along and invents it.' I'll paraphrase and say that just because genius comes along and claims to know absolutely that something should be done it doesn't necessarily mean we should follow it.

Well De Lesseps also attempted the first foray into building the Panama Canal and completely and utterly failed. An estimated 22,000 people died and the French failed to build the Panama Canal. So a man who was innovative and managed to connect the Red Sea and the Mediterranean when Napoleon Bonaparte advisors said it couldn't be done, managed the 'impossible' and yet manage to fail in his next venture.

So I guess what I'm saying is life is hit and miss. Sometimes it works sometimes it doesn't and when you think you know something sometimes it's best to listen to others around you who are more versed in matters of which you want to know about than people proclaimed to be knowledgable about a particular subject.

We have more experience with our own bodies, so why not offer what we know.
 

Jane

Digital opinion leader
Where have you guys been the past few months? There have been <b>tons</b> of heated threads along with hurt feelings. (transplant vs not, nanny vs stay-home mom, adoption, IVF or no kid, SD=good or bad,etc) As long as there's an open forum, they'll be differences of opinions. Some people share their advice with a bit more "assertiveness" than others. Some people take offense, other people let it slide.

If I can back up Melissa, she is only pointing out that everyone here is free to offer opinions. Take what you need, leave the rest. There is so much good information here. Not all of it is what I need for my family right now, but maybe its what someone else needs today.
 

Ender

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Jane</b></i>

Where have you guys been the past few months? There have been <b>tons</b> of heated threads along with hurt feelings. (transplant vs not, nanny vs stay-home mom, adoption, IVF or no kid, SD=good or bad,etc) As long as there's an open forum, they'll be differences of opinions. Some people share their advice with a bit more "assertiveness" than others. Some people take offense, other people let it slide.



If I can back up Melissa, she is only pointing out that everyone here is free to offer opinions. Take what you need, leave the rest. There is so much good information here. Not all of it is what I need for my family right now, but maybe its what someone else needs today.</end quote></div>

Ok I'm still lost?
 

Lilith

New member
I think I know what Melissa is referring to, judging by Jane's
interpretation.  Basically most of those issues are on-going.
 I don't see them ever stopping.  I guess it would be
nice if everyone respected each other's opinions, but that's not
going to happen.  Things get typed the wrong way, interpreted
the wrong way, etc., and a heated debate follows.  That's just
the way things end up.  Some people feel very strongly about
some things (such as transplants) and get offended when someone
comes behind them and disagrees, especially when its not a very
tactful response.<br>
<br>
But that's just the nature of the beast.  Things get lost in
communication, especially on the internet.  Best to just let
those things roll off your shoulders.  As Jane said, take what
you can, leave the rest.<br>
<br>
Of course, I could also be way off the mark from what Melissa is
referring to.  In which case, sorry for blabbing <img src="i/expressions/face-icon-small-happy.gif" border="0">
 

Scarlett81

New member
Ok, after I thought about this more I got it. Jane you summed it up really well, I think-but that's just my opinion.....<img src="i/expressions/face-icon-small-smile.gif" border="0">

J/K. Its a very good reminder that we all have a right to give our opinion on a topic, wether we are an "expert" or just a well-meaning interested person.

And I think its ok for people to feel strongly about an issue, and even debate a controversial topic. Like Jane mentioned-pregnancy, adoption, medicines, IVF ect. But you can debate and question and be tactful at the same time. You can be respectful of the other person's opinion.
 
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