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The Patient’s Voice Project: Real Life Stories From Diabetics Needed

We need your help with an exciting new research project targeting people with diabetes (Type 1 and Type 2). Whether you, a friend or family member is dealing with this disease, it is imperative we have participation from as many people as possible for a critical evaluation and analysis of dietary trends regarding diabetes management. Full details on how YOU can get involved are below.

Just when you think the low-carb message has possibly hit a stalemate outside the friendly confines of the enthusiastic and cohesive members of the low-carb community on the Internet, along comes some encouraging news on the research front for those of us who are committed to this way of eating that has so radically changed our lives forever for the better. I’ve previously blogged about the trend that has been happening in the research realm using low-carb diets for treating obesity. But in recent years a shift in thinking has taken place moving the focus away from simple weight loss (which is merely a side effect of a sound nutritional plan like low-carb anyway) to more of a means for managing disease. This is an exciting new development that could catapult the cultural thinking about low-carb diets from a “quick weight loss fad” into a bona fide and effective means for treating real diseases that plagued tens of millions of people.

My friend and biochemistry professor extraordinaire Dr. Richard Feinman from The Nutrition & Metabolism Society has been working diligently behind-the-scenes in the research world to get more exposure and funding for the emerging evidence supporting the concept of carbohydrate-restriction as a therapeutic measure for dealing with various chronic diseases–most notably diabetes. In fact, he was able to get in touch with the Office of Research Integrity (ORI) earlier this year about making a series of presentations at their annual conference on the “Crisis In Nutrition” that exists in the United States today. This government agency is connected to Health & Human Services (HHS) overseeing all research being conducted and funded by agencies such as the National Institutes of Health (NIH), The Centers for Disease Control and Prevention (CDC), and The Food and Drug Administration (FDA), for example. Billions of dollars have been allocated annually to insure the veracity of the research being funded by the government.

The “Quest for Research Excellence 2011 Conference” from the ORI was scheduled to take place August 29-30, 2011 in Washington, DC, but it was postponed due to Hurricane Irene. They have since rescheduled the event for March 15-16, 2012 and Dr. Feinman has been asked to oversee the “Crisis In Nutrition” portion of the conference featuring multiple presentations on the utter failure of current nutritional research and policy. One of the lectures to be presented on is “Vox Populi” seeking out the “voice of the people”–THAT’S YOU AND ME! Working with me, Tom Naughton from FAT HEAD and Laura Dolson from About.com Low-Carb Diets, Dr. Feinman has been seeking insights into how a growing share of the population views the current state of nutrition science and the official dietary recommendations. The three of us bloggers have been scouring our respective sites for real-life examples of how people have sought out alternative nutritional information in light of the failure of the official recommendations from government agencies like the USDA. It wasn’t very difficult to find such examples from three of the biggest low-carb bloggers and we’re excited to be a part of this “Crisis In Nutrition” series.

The fact is all of the supposed benefits of the low-fat, grain-based diets promoted by the U.S. government are not based on solid science. As a result, many people no longer trust the government when it comes to the subject of nutrition. The tremendous benefits of low-carbohydrate diets have seemingly been deliberately squelched and it’s evident in comments like this one:

“The medical and pharmaceutical companies have no interest in us becoming healthy through nutrition. It is in their financial interest to keep us where we are so they can sell us medications.”

This distrust in the government’s dietary recommendations is not limited to patients–many doctors and those in nutritional academia are also highly concerned about the negative impact of nonsensical and poorly-designed studies on diet that lead to some rather dubious conclusions that are not even close to being grounded in any real scientific evidence. Here’s what one of them had to say about this issue in the comments section:

“Sometimes I wonder if people making these statements even took a basic course in biochemistry and physiology.”

As such, a lot of patients have chosen to give up on their doctors, dietitians and other health care professionals and instead turn to the Internet for help with their weight and health issues. Frustrated diabetics especially have grown weary of the low-fat, high-carb diet that is not helping them control their blood sugar levels. As one woman wrote about her experience with a diabetes center:

“I was so frustrated, I quit going to the center for check-ups.”

This is a serious problem that requires immediate attention from governmental research oversight committees like the Office of Research Integrity. They need to know that the patient community is not being well-served by an establishment that refuses to address its critics from within the general population as well as health professionals. That’s what we will be sharing at the March 15-16, 2012 meeting where Tom, Laura and/or me will be presenting the “Vox Populi” data at the ORI conference. But since we have a little more time before that happens, Dr. Feinman has come up with a way to collect even more invaluable information to be presented at that meeting.

Introducing The Patient’s Voice Project (PVP).

This is an online effort to solicit people with diabetes (Type 1 and Type 2) to share their experiences following a variety of diets designed to control or improve this disease. If you’ve tried the traditional diabetic diet (low-fat, high-carb) and then switched to a nutritional plan like the one promoted by Dr. Richard Bernstein for diabetics (high-fat, low-carb), then the researchers want to hear from YOU! Real-life examples from people with diabetes who have been able to successfully manage their disease with minimal medications simply by making changes in their diet are requested. You can be as verbose as you’d like to be in sharing your story in your own words. This will probably take about 15 minutes maximum to write, but feel free to be as thorough as you can be to provide the best results for PVP.

If you would be willing to share your experiences with diet as a therapy for managing your diabetes, then please e-mail your story to The Patient’s Voice Project Scientific Coordinator Michael Turchiano (mturchiano.pvp@gmail.com) and copy me on the e-mail as well (livinlowcarbman@charter.net). Be sure to include all the specific details of your situation, including when you were diagnosed with diabetes, what diets you have tried to deal with the disease, how long you were on each of the diets, whether you consulted with a doctor or other health care provider, what diet they recommended to treat your diabetes, how they responded to your nutritional choices, and any medical records relating to your diabetes diagnosis and treatment results you’d like to share. You control how much information you are willing to provide and the researchers will compile all the data from the submissions they receive. They especially want to hear from diabetics who have changed their diet from one to another and experienced a different outcome. They also want to know who or what influenced you to change nutritional plans for treating your diabetes. All of the information you provide will be kept confidential and will only be used for the purposes of this research.

The information you provide will be a critical part of future published research in scientific journals as well as at the Office of Research Integrity conference early next year. WE NEED TO HEAR FROM YOU! Help us make this effort successful by posting this information to Twitter, Facebook, blogs, podcasts…anywhere you can get the word out to diabetics–again, testimonies from both Type 1 and Type 2 are desired. Here’s a golden opportunity to send a message to those government agencies who have fooled the American public into thinking a “healthy” diet should be devoid of fat, heavily focused on grain and vegetable oil consumption, and eschewing animal-based foods–we know better, don’t we? Don’t delay. Send in YOUR story today. DON’T FORGET: E-mail Michael Turchiano (mturchiano.pvp@gmail.com) and copy me in (livinlowcarbman@charter.net) on your response. Let’s change the world and make a real difference for the sake of diabetics and non-diabetics alike.

  • Gretchen

    You might be interested that a WebMD slide show on cholesterol
    said:

    “Cholesterol Buster: Low-Carb Diet
    There’s growing evidence
    that low-carb diets may be better than low-fat diets for improving
    cholesterol levels. In a two-year study funded by the National
    Institutes of Health, people who followed a low-carb plan had
    significantly better HDL (good cholesterol) levels than those who
    followed a low-fat plan.”

    http://www.webmd.com/cholesterol-management/ss/slideshow-cholesterol-overview

    So some information is beginning to trickle down. (I’m assuming that patients are higher than the medical profession.)

  • Anonymous

    I added my voice to this, thanks Jimmy!

    • Anonymous

      THANKS for sharing your story.

  • User356811

    Well you are somewhat selective , I doubt that you would be prepared to look at people who have been successful with non low carb methods – you and your chronies always ignore the teal facts! Stories are very anecdotal and may not be true.

    • Anonymous

      We welcome any and all stories people want to share for this study. Low-carb, vegan, or whatever. Send it in!