Epic but predictable “Fail”

Sunday, July 21, 2013

I’ve been lurking a bit the last few days. That may be a permanent condition, I don’t know at the moment. You see, I committed the unforgiveable: I shared personal experience and nutritional information I’ve gleaned from various sources with the open membership here at Spark.

I should have known better, and stayed sequestered in our “alternate” group forums. But I didn’t. I am interested to hear what people are saying in general. For those of you who are acquainted with me through my posts, you know I am very concerned for people who are seeking and failing in their past (and maybe current) diet plans. When someone asks a question, or expresses a concern or confusion which I have either experienced myself, or have some information to impart, I offer it to them. I never *recommend* a thing to anyone, or present it in a way which might be considered a directive… not “advice,” per se. If I am quoting a resource I’ve been able to corroborate from several (reliable) sources, I will give it a bit more weight… but I ALWAYS qualify anything by stating everyone should do their own due diligence, research it themselves, check it with their healthcare team, and NEVER just adopt my individual regime without taking responsibility for their own health.

Be that as it may, I got a smart “slap-down” on an open forum for posting a reply to a person who was concerned and asked a specific question that I also had, and have done some information mining upon, and thought I might be able to join in the discussion she opened. My mistake. I’ve cut-n-pasted a bit of the interchange here…

“I just got the results of a health screening back and my cholesterol levels were off. My total cholesterol was actually a little below the healthy/normal range... Any tips on what I can eat or do to raise my HDL without raising my LDL? “

I responded with my experience, and cut-n-pasted the exchange I’d gotten from the alternate site, since another respondent on the thread here seemed dubious about what I’d said. After I’d done that, yet another poster offered up a long commentary about what to eat, what will reduce or prevent this or that… a long list of what certainly felt like directives – at least to me. I don’t mind such things in general; I’m capable of taking information like that and following up on it to see if it holds water or if it’s just a knee-jerk reiteration of CW (which I think is more common and less wise… but that’s a topic for another day). So whatever others have to say is fine by me. I welcome alternative viewpoints. It gives me a reason to explore and find more “proofs” to bolster my own.

But then, I get this:

“There is some misinformation on this thread that needs a little clarification.
…there are several statements that are not backed by scientific research.

This site is not about being an experiment of 1.
The goal of this site is to help our 12 million members achieve and maintain a healthier body through evidence based, peer-reviewed published research on nutrition and fitness.
I am not aware of any research evidence the shows long term usage of coconut oil to boost HDL level.
I am not aware of any research evidence that shows that long term usage of a high fat diet boosts HDL level.

While you may share what you are personally doing; we do have guidelines here at Sparkpeople asking all members to use evidence based research data when sharing nutrition and fitness content.”

NOW I take exception.
In the first part… I never offered a statement which was unfounded by current science. I am a medical professional. I’ve been in my field for over 30 years. I know “fluff” from substance, and I don’t rely on ANYthing unless I can cross-reference it. Does it always agree with CW? No. Is that a bad thing? Maybe. Maybe not. If we never questioned CW, we’d still be afraid of falling off the flat plane of the planet (Those forward-thinkers were ostracized as heretics, too).
Very many of my researched topics come from Google Scholar™. I mention this to people occasionally and they don’t even have an idea what that IS, much less use it. I have subscriptions to several medical e-journals and research-reporting sites. A couple of them I pay for, even though I’m retired and don’t have to have them. I also use the standard Google™. I also use blogsites from groups aligned with whatever concept I’m trying to get information about – unless I get a feel that it’s biased or has conflict of interest, or else isn’t doing any independent thinking other than to reiterate what’s been “sold” to them. I can read that original from the original. I don’t want to just hear a repetition because it’s something to say without engaging any brain cells. I didn’t think forum posts had to conform to MLA standards, so I haven’t been citing or footnoting every word I put in a comment. Again, my mistake.
OTOH… I have to say that I’ve not seen anyone else writing in MLA style, either. Most everyone who has a link to share will do so, as do I. But citations? I’m not sure I’ve EVER seen a post with a citation or footnote. Perhaps I’m just oblivious.

On the second point…
This site is EXACTLY about “being an experiment of 1.” We’re all sharing our personal experiences. It’s in every single post, on every forum, and is considered by many to be the very most valuable asset they gain from SP. We share our trials, our successes, our fears, our hopes, our “experiments” with our eating choices… every person posting is “an experiment of 1.” Even those who aren’t prolific posters are still working toward their own particular goals singularly. We’re not a hive of bees.

On the third point…
I’m unimpressed to have numbers thrown at me. The fact that more people believe a thing carries absolutely no weight whatsoever with me… unless to make me more suspicious of it.
For the administration personnel to bow to that pressure is expected. Advice given from an “authority” is always subject to dispute or objection, and in that light, SP *officials* simply have to stay within guidelines. Perhaps they would still do so in an unconstrained environment – eg, personal conversations… or perhaps they might not. In any case, it isn’t possible in a public forum where they’re perceived as experts and could possibly be taken more to heart than even the members’ personal healthcare teams. I get it. But the line is drawn when it’s expected for that same membership to adhere to the business practice and standards guidelines that the administration has to follow. We’re sharing, not dispensing, information and experiences.

On the fourth point…
I can hardly be held accountable for the fact that a trained expert is “not aware” of information that is readily available to unbiased enquiry. Can they recommend it? SHOULD they recommend it? well, probably not. See point 3, above. Is it recommendable? *I* believe it is. I’ve seen enough repetition of some of those topics online, in print, via research, and from personal experience, that I feel confident enough about it to share it with others and to incorporate it into my own health plan.
As a credentialed medical professional, I am required to maintain my qualifications by attending continuing education to the tune of a minimum number of contact hours per requalification period. If I fail to do this, I will lose that credentialing and have to start “from zero” by sitting again for the examination. This puts a minor fear in me, naturally. But I also feel that if I’m going to give myself a title, I need to have competency in it. Not only that, I love my field. I WANT to know what’s happening, and to be cognizant of new thoughts and corrections in old ones. Keep in mind, I AM RETIRED. I don’t need to do this! And yet, every recertification period, I typically have twice to three times the number of requisite hours to submit to the authorizing committee. So… why is a similar medical professional “not aware” of the massive amounts of new information being promoted in the field? *I* am aware of it (and it’s not even in my field!). I actively search for it. And yes, I throw out a fair amount of it as simply not credible… or else having questionable science behind it. I’m not just swallowing every likely-sounding tidbit I happen across. I am discriminating, although I’m also not refusing to consider possibilities. “Not aware?” No. I don’t think I’m not aware. And I’m not sure I’d admit to it if I was.

And on the last point, I simply have neither time nor inclination to compose technical dissertations, complete with citations. I suppose that means I am barred from any posts, since members are admonished “to use evidence based research data when sharing nutrition and fitness content.” As a result, I suppose I won’t be able to join in as many discussions as I’d like to. I can’t reach out to others struggling for understanding or support. I guess I should say, “I shouldn’t,” because there are, no doubt, going to be times I simply can’t help myself. I offer some concern to you on the same subject. I guess we can’t just talk with each other. Get the MLA Style book.

I’m mostly despondent about the whole ordeal. I feel excluded and singled out. I feel strongly discriminated against. I had respect for SP and the service they provide. But now it’s overshadowed by the squelching of independent thought. I am grateful for the benefit I am having with the Nutrition Tracker. I suppose, since this is a free site, that they can simply block your membership any time the whim takes them. I don’t want to lose access to the one resource remaining to me here, so I have to find some way to break myself of sharing in the community give-and-take. It will make my journey much more difficult. I see no alternative.

Those of you who can still help others groping along here have my envy and admiration. Please put my good wishes alongside yours where you can!
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Member Comments About This Blog Post
    Glad to have found you today. Perfectly lovely--my doctor put me on this diet, and he has an MD and 34 years experience behind him. But what does he know??? !! emoticon

    Stand firm, and move forward.
    2554 days ago
  • SKATER787
    This site is not about being an experiment of 1.

    That's ludicrous. Stuff that are unique and have quantity of 1 are like fingerprints, DNA, iris. Other than that, it's not possible to get quantity of 1 on mundane activities that we do. You can't throw a stick without hitting someone who is doing the same thing as you. Thousands of people eat coconut oil. OK, so maybe it's an experiment but it's definitely not an experiment of 1. emoticon
    2605 days ago
  • LE7_1234
    "I am not aware of any research evidence the shows long term usage of coconut oil to boost HDL level. "

    I wasn't aware of it, either. But the first item on the list if you google "coconut oil hdl" is an article from Harvard about the potential benefits... Gee, that was hard to find....

    I didn't see it mentioned last time I was looking into it (DH has low HDL), so thank you. Coincidentally, I've been using more coconut oil recently. :-)

    Hang in there!
    2605 days ago
    SKATER.... it was from one of our administration team.
    2605 days ago
  • SKATER787
    "This site is not about being an experiment of 1.

    The goal of this site is to help our 12 million members ......"

    Was that from the site admin or another Sparker trying to sound like an admin?

    2606 days ago
    Please keep posting! I have enjoyed reading several of your posts, and appreciate that you so willingly share *your* insights. I don't always see eye to eye with what each and everyone posts here, but if everyone were in consensus this place would be a less interesting place to be.
    2608 days ago
    I am so angry right now that I can't string words together and create a coherent sentence! I am relatively new to SP and I don't fully "get" the ins and outs of how things work around here. But! What IS clear to me is your level of expertise, knowledge and sound judgment. From nothing more than reading what you wrote "here", I can "know" all that. You clearly are not a lay person just throwing your 2 cents into the mix. . . which pretty clearly is what happens 'round here most of the time. SP is made up of lay people. Hell if we had the answers - the "expert, scientifically proven" answers (which - as you so eloquently pointed out - are ALWAYS subject to change!), we wouldn't NEED SP, now would we? Who is this FOOL that gave you the slap-down? Just because "he" or "she" is "not aware of this or that", doesn't mean a damn thing to someone like me. What exactly are his or her credentials to be in the know about anything? I have dieted my way up to 220 pounds over the past 52 years following the advice of "experts". And if I know anything it is this: science is NOT exact! Rather, it is ever changing! Sorry, I am rambling here. Like I said, I'm so angry that I can't get it together enough to make a bit of sense. Whatever you do, Ex, please don't leave or quit or continue to lurk. You very clearly have much to offer and I for one am happy that there are folks like you here. If all this site had to offer was a bunch of "fluff" and "junk science" (which by the way, it is FULL of), it wouldn't be of any use to anyone serious about their health. That "my way or the highway" mentality of the FOOL who gave you the slap-down is reminiscent of a dictatorship. And I hope that, that's not what SP is really all about. For if it is? Then this entire thing is a complete wast of time. Some time has passed since you wrote your blog entry. From the bottom of my heart, I hope you are feeling better - more confident - less threatened. Part of our journey is to learn what we can, when we can. And though I can make no sense of it, maybe just maybe this experience has been something you "needed" in some way to move forward on your path. I hope so. I hope the day will come when you can look back on this and clearly "see" why it happened or had to happen. More than all of that, I wish you peace within. This incident may have triggered strong emotion in you and that emotion may cause you to slip into old, unhealthy patterns. Please don't let it. Don't surrender your power to the words of another. They aren't worth it. All that matters is YOU! Be good to YOU! And know that you have supporters out here who would stand shoulder to shoulder with you and fight the good fight. Guess what I'm saying is. . . you are not alone. Keep right on sparking my friend!
    2615 days ago
  • KERRYG155
    Don't feel singled out! There is always someone out there who "knows" more than anyone else and of course, they are right. As for the site's comment, someone must have filed a complaint-probably the one who knows everything, but I have noticed on retaking a lot of the quizzes and reading the articles that the site does not change their info even when data has come out stating the new studies that show the past beliefs to be totally wrong. So, who are they to come up with that statement. I have heard that coconut oil is good for you but not the hydrogenated type we used to use at the movie theater that made the oh so good popcorn!
    2618 days ago
    Don't give up Exotec. If you don't go out in public and say it, how will they hear it? And if they never hear it, how will they know what to try other than low fat / restricted calories.
    2618 days ago
    Thanks, everybody, for your support. It helps. I've been fretting and fuming myself into quite a state since this occurred. I suppose I'll get over it. I usually can let a thing go after I've beat it to death within myself for a while. I will be back to my usual self - at least on our specific forums, if not the open ones... but for the moment I'm just laying low and licking my wounds. And, unfortunately, my eating habits are showing the effects, too! boo

    I'm very glad to know I've been of use to you, and others in our groups. Now, if I could just find the right way to carefully touch those on the open forums who haven't heard the positive side and the possible benefit they might achieve. But I can see I'm going to have to be more than cautious *IF* I venture "off the reservation" again.

    Maybe the best I can do would be to just post an invitation to read our posts in our own environment, instead of trying to post to the open ones.

    Thanks anyhow, guys. It matters.
    2618 days ago
    I read this earlier this morning and have been steaming and stewing and swearing ever since...

    Honestly, if this site is not about being an experiment of n=1, then they need to shut down the message board completely, list the studies that they deem acceptable, and just have their "experts" answer every question by individual email. Since personal experience, especially when it's specifically noted to be just personal experience, and noted to have been discussed with a medical team to boot, is apparently not acceptable, then there is no reason for an open message board to exist.

    I want to thank you for the information that you have put up on the general message boards, and to thank you for how you present it. I don't do low carb, and yet I have benefited from the info that you've put up by getting sent in new research directions and making several tweaks to my diet that have worked well for me. I would not have done the research that I have without you leading the way, so know that you are heard and you have helped!

    I'm heading out right away, but just had to comment on this first.

    Take care, stay strong, and keep pushing --- it's those who push and challenge the "norm" who are needed to keep the knowledge base growing!
    2618 days ago
    Posting with an MLA citation -- I would like to see a few people do that -- there are probably a few 'experts' that put together a citation.

    One of the things I admire most about our LC groups is the wealth of knowledge. I greatly appreciate the links, discoveries and comments that are shared because it makes me think, question, try new things -- and ultimately figure out how my body works, how my mind works, and discover the tools that will make me successful.

    Please keep posting. I need your knowledge.
    2618 days ago
    It is the 4th point I'm having the most problem with. As you say, they aren't aware of any research- why the hell not? Isn't that what experts are supposed to do? Stay informed so their ideas and beliefs don't become outdated? This type of thing just galls me to no end!

    Anyway, I won't go into my own rant here. Stick with us in the LC group and we'll have your back. I for one appreciate your info and as an adult that can make my own decisions can choose to use that info or not.

    Hang in there and don't let the slap get to you, there really is no excuse for ignorance in this day and age.

    2618 days ago
    I'm so sorry to hear you went through this. I too had a similar experience, I was not "slapped" down by anyone very official, just several mean spirited diabetics. emoticon Therefor I had to leave the diabetes group. So I can only imagine what you ran in to. I too just wanted to help those who were continually "failing" to succeed in their eating plan.
    I agree, this is exactly about being an experiment of 1!!
    You are brave and courageous!
    2619 days ago
    I'll come back to this blog after I return from church and read the middle points you make, but as soon as I read “There is some misinformation on this thread that needs a little clarification...." I just nodded and muttered "Becky Hand". She generally only singles out those CRAZY AND DANGEROUS low-carbers for her ectomorphic scorn.

    I see that Russell jumped in right after you. Good man, Russell. I don't have enough psychic energy to spend on the main forums. It's taxing enough to me to help support the "locals", lol!
    2619 days ago
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