Rant - Posting misinformation

I have been reading these boards for support, communication and guidance for almost four years.   It is not my only resource, as I am a researcher by nature, so I look at every post with a somewhat jaundiced eye.      Unfortunately, not everyone has that viewpoint, and many individuals use this forum as their sole source of information.    When I do post information, I do not post heresay or facts from non-reliable sources, and I always try to preface my advice with a "from my experience" or "this works for me, but your results may vary," or "don't take this as medical advice" caveat.   
I signed on this morning to check the posts and found, in one very quick review of the site, three posts that are not only non-factual, but could be construed as contraindicated advice.  I'm not going to single any of them out.   I become terribly concerned when this happens.    At a DS gathering last summer, we discussed how some people post with such misinformed self-authority that they are actually dangerous to the health and safety of others on this board.  Please don't be one of those people! 
I don't want to sound like the board den mother, but this is just a gentle reminder to be careful about stating information as the gospel truth.   As all good little DS'ers should - do your research!
Thank you - now back to your regular programming.  

But, but, but, I want you to be the Den Mother..... It's so nice to have people like you with the experience to keep things in perspective here. Please don't ever quite being you Julie!

Thanks, Julie!  Glad to know that you're looking out for us!  :)

I have to admit, I am naturally skeptical too, and just because somebody speaks with authority I don't automatically believe them.  I will admit that that's why I went with my doctor's recommendation of 65 g of protein a day, even though everyone on the board advocated over 100 g protein a day.  One thing I do know, if I aim for 100 g protein a day, I can't eat nearly as many carbs, that's for sure.

pp

That's been a common dilemma for me too, pp, because your doc is supposed to know what they are talking about, right?  But my time spent on these boards has taught me that experience does win out.    When you see labs coming back over and over on people that directly conflict what the DS docs say in regard to nutrition, I start realized that the stats will win out.  It's a tough call, for sure!  Most of my docs now freely admit I know more about calcium metabolism than they do, but I'm kind of lucky that way.   One dared not to the other day, and his wife, who works with him, kicked him in the ankle and told him to shut up and listen to me, LOL.  

Couldn't agree more with doing your own research. Like you said, there are people *****search and then there are people who go by word of mouth. Ultimately it is up to that person to scrutinize what they take in...hopefully they'll be equally keen to what they pass along as fact.
If your own health isn't the motivator in learning everything you can about the DS and what effects it, then there's not much anyone can do to make it so.

*insert in my opinion caveat here* Don't you think, being a DS veteran, that you should correct the misinformation...at the very least, let the poster know they are incorrect or using outdated data, possibly steering them to the correct information? A private message perhaps so as not to embarrass them on a public forum? C'mon Den Momma! *lol* Nope, it just doesn't fit ya Julie...you're too young and purty to be called that!

I will correct misinformation depending on the cir****tances, especially if it it's in an area I'm pretty well-versed in, such as calcium, D, oxalate levels, etc, and I'll usually make sure I have my facts straight when I do.   I'll jump in when I feel that something might adversely affect an individual or when common myths are being perpetuated, or if I feel people are using unreliable resources.  A few months back, an individual who posts on this board and claimed to be a professional in the biomedical field, made many claims about particular supplements purporting them to be fact.   One in particular stood out, because she claimed it had superior bioavailablity and absorbability.    It was kind of like "You should use this supplement because it has this, this, this and this, because it helps this, this and this.    I believe it was for calcium bisglycinate.    I googled this particular supplement, and the first site that came up was a health food site.   She had quite obviously cut and pasted the exact information from that site to provide the board with information, but represented it as coming from her extensive background in chemistry.  I was pissed!
The other area I'll jump all over folks about is commonly perpetuated myths, especially the one "If you have any deficiencies it's because you weren't compliant with your supplements and protein."   That's total bull****   I have an extensive blog posting on that topic as it relates to me,  so I'll spare you the gory details.  
As to the den mother thing - you are sweet, but it beats me being called "The DS Mother Superior" by my wonderful friend Kim from the MIDS group!   She posted that as the caption under my picture from our local gathering!  Bwah!

It's similar to how people view doctors. Since they hold that esteemed title people think they are not to question the decisions that effect their own lives. Bull**** I say. Question them. Question it. Hound them to bits until you understand it and research it for yourself. If you don't, you have no one to blame but yourself.

Oh yeah...definitely bests the DS Mother Superior :)

 I was an ER tech for seven years, and it has only been since my DS that I have been shocked - no.... stunned at how little doctors know about particular medical needs.  I suppose that's why we have specialists; however, I've seen specialists that have known jack squat.   I went to see an endocrinologist for my calcium and D deficiencies and osteoporosis.    I asked him about the role that Vitamin K plays in calcium delivery, and he said "Well, I know it helps with clotting - I didn't know it had anything to do with bones."    ARRRRGH!

Tell me you went to a new endocrinologist!? I've had a specialist tell me to stick out my tongue, which I did. He told my husband to stick out his tongue, which he did. He looked me dead in the eye and said "lose weight, quit smoking and you'll be fine." Bastid charged me $240 for that bit of specialization...and to boot it was a three hour drive to get there. After the tears I got mad. Damn mad. I swore never again and that is what made me diligent about questioning and researching. So on the flip side, it was worth every cent...it made me pro-active about my own health.