The Patient’s Voice Project. Your Diabetes Story.

Posted: October 30, 2011 in American Diabetes Association, low-carbohydrate diet, The Nutrition Story
Tags: , , , , ,

Doctor:  Therein the patient must minister to himself.

Macbeth: Throw physic [medicine] to the dogs; I’ll none of it.

— William Shakespeare, Macbeth

The epidemic of diabetes, if it can be contained at all, will probably fall to the efforts of the collective voice of patients and individual dedicated physicians. The complete abdication of responsibility by the American Diabetes Association (sugar is okay if you “cover it with insulin”) and by other agencies and individual experts, and the media’s need to keep market share with each day’s meaningless new epidemiologic breakthrough leaves the problem of explanation of the disease and its treatment in the hands of  individuals.

Jeff O’Connell’s recently published Sugar Nation  provides the most compelling introduction to what diabetes really means to a patient, and the latest edition of Dr. Bernstein’s encyclopedic Diabetes Solution  is the state-of-the art treatment from the patient-turned-physician.  Although the nutritional establishment has been able to resist these individual efforts — the ADA wouldn’t even accept ads for Dr. Bernstein’s book in the early editions — practicing physicians are primarily interested in their patients and may not know or care what the expert nutritional panels say.  You can send your diabetes story to Michael Turchiano (MTurchiano.PVP@gmail.com)  and Jimmy Moore (livinlowcarbman@charter.net) at The Patient’s Voice Project.

The Patient’s Voice Project

The Patient’s Voice Project, which began soliciting input on Friday, is a research study whose results will be presented at the Office of Research Integrity (ORI) conference on Quest for Research Excellence, March 15-16 in Washington, D.C. The conference was originally scheduled for the end of August but there was a conflict with Hurricane Irene.

The Patients Voice Project is an outgrowth of the scheduled talk “Vox Populi,” the text for which is at the end of this post.  A major stimulus was also our previous study on the Active Low-Carber Forums, an online support group. The March conference will present a session on “Crisis in Nutrition” that will include the results of the Patient’s Voice Project.

Official Notice from the Scientific Coordinator, Michael Turchiano

The Patient’s Voice Project is an effort to collect first hand accounts of the experience of people with diabetes (type 1 and type 2) with different diets.  If you are a person with diabetes and would be willing to share your experiences with diet as a therapy for diabetes, please send information to Michael Turchiano (MTurchiano.PVP@gmail.com) and a copy to Jimmy Moore (livinlowcarbman@charter.net). Please include details of your diets and duration and whether you are willing to be cited by name in any publication.

It is important to point out that, whereas we think that the benefits of carbohydrate restriction have been greatly under-appreciated and under-recommended, the goal is to find out about people’s experiences:both benefits and limitations of different diets. If you have not had good success with low-carbohydrate diets, it is equally important to share these experiences.

  • Indicate if you saw a physician or other health provider, what their attitudes were and whether you would be willing to share medical records.
  • We are particularly interested in people who have switched diets and had different outcomes.
  • Include any relevant laboratory or medical results that you think are relevant but we are primarily interested in your personal reactions to different diets and interaction with physicians and other health providers.
  • Finally, please indicate what factors influenced your choices (physician or nutritionist recommendations, information on popular diets(?) or scientific publications).

Thanks for your help.  The Patient’s Voice Project will analyze and publish conclusions in popular and scientific journals.

The Survey of the Active Low-Carber Forums

The Active Low-Carber Forums (ALCF) is an on-line support group that was started in 2000.  At the time of our survey (2006), it had 86,000 members and currently has more than 130,000.  Our original survey asked members of the forum to complete a 27-item questionnaire and to provide a narrative on any other health issues.  Some of the narrative answers included in the published paper were as follows:

“I no longer have diabetes, high blood pressure, sleep apnea, joint pain, back pain and loss of energy.”

“I started low carbing for diabetes. My 3 month blood sugar was 8.9 when diagnosed. It is now 5.4. My doctor is thrilled with my diabetes control and as a side benefit, I lost all that weight!”

 “I’m controlling my diabetes without meds or injecting insulin (with an a1c below 5), my lipid profile has improved, I’ve lost weight, I’ve gained both strength and endurance, and I’ve been able to discontinue one of my blood pressure meds.”

 “I have much more energy, fewer colds or other health problems. I was able to go completely off oral diabetes medication.”

The survey covered a number of topics.  We found that most respondents had the perception that they ate less food than before their low-carb diet, and most felt that the major change in their diet was a large increase in the consumption of green vegetables and a corresponding large decrease in fruit intake.

Physicians Attitudes in the ALCF survey

The Patient’s Voice Project is likely to tell us as much about physicians, or at least their interaction with patients, as about the patients themselves. We found in the ACLF survey that slightly more than half of the people who responded said that they had consulted a physician. We were surprised that about 55 % said that the physician or other health professional was supportive of their diet. Another 30 % or so fit the category of “did not have an opinion but was encouraging after seeing results.” Only 6 % of responders indicated that “they were discouraging even after I showed good results,” which may be a surprising result depending on your feeling about the rationality of doctors vs hostility to the Atkins diet.  Perusal of patients’ opinions on diabetes websites, however, suggests that the story on people with diabetes will not be as encouraging. 

The Survey on Sources of Information

Given the contentious nature of the debate on diet in diabetes therapy, it is not surprising that a  group following a low-carb strategy would  not put much stock in official sources. The table below shows the breakdown on sources of information from the ALCF survey.  Of the half of respondents who said that they relied on original scientific publications, 20 % felt they had generally inadequate access (important articles were not accessible) whereas 61 % felt that access was adequate and were able to see most articles that they wanted.

Voices of Dissatisfaction.

Posts on the ALCLF itself reinforced the idea that official recommendations were not only a limited source of information but that many were perceived as misleading. Typical posts cited in the paper:

“The ‘health experts’ are telling kids and parents the wrong foods to eat. Until we start beating the ‘health experts’ the kids won’t get any better. If health care costs are soaring and type 2 diabetes and its complications, as are most of these expenses why are we not putting a ‘sin’ tax on high glycemic foods to cut consumption and help pay for these cost? Beat the ‘health experts’ – not the kids!”

 While I am not a fan of sin taxes, the dissatisfaction is clear, and…

 “Until I researched it three years ago – I thought the most important thing was low fat. So I was eating the hell out of low fat products and my health continued to get worse.”

Similarly, the recent article in Diabetes Health by Hope Warshaw  http://bit.ly/mYm2O3 with its bizarre recommendation for people with diabetes to increase their carbohydrate intake elicited a number of statements of dissatisfaction:

“Respectfully, this column is not helpful to diabetics and probably dangerous. I am going on 6 years of eating 30-35 carbs/day. My A1c has been in the “non-diabetic” range ever since I went this route and I feel better than I have in years. I am not an exception among the many folks I know who live a good life on restricted carb diets.”

“…carbohydrates are a very dangerous and should be consumed with caution and knowledge. i had awful lipids and blood sugar control on a low fat/high carb diet. now that i have switched to a lower carb diet – all my numbers are superb. and the diet is easy to follow and very satisfying!”

 Summary:

The Project is intended to bring out the patient’s perspective on diet as therapy in diabetes.  The goals are to document people’s experience in finding the right diet. In particular, we are interested in whether switching to a low-carbohydrate diet provided improvement over the recommended diet typical of the ADA. Or not.  We are looking for a narrative that can bring out how people make decisions on choosing a diet and sticking with it: the influences of physicians, the media and personal experimentation. Your diabetes story.

Text of Abstract for the Original ORI Conference

 Crisis in Nutrition: IV. Vox Populi

 Authors: Tom Naughton, Jimmy Moore, Laura Dolson

Objective: Blogs and other social media provide insights into how a growing share of the population views the current state of nutrition science and the official dietary recommendations. We ask what can be learned from online discussions among people who dispute and distrust the official recommendations.

Main points: A growing share of the population no longer trusts the dietary advice offered by private and government health agencies. They believe the supposed benefits of the low-fat, grain-based diets promoted by those agencies are not based on solid science and that benefits of low-carbohydrate diets have been deliberately squelched. The following is typical of comments the authors (whose websites draw a combined 1.5 million visitors monthly) receive daily:

 “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.”

 Similar distrust of the government’s dietary recommendations has been expressed by doctors and academics. The following comments, left by a physician on one of the authors’ blogs, are not unusual:

 “You and Denise Minger should collaborate on a book about the shoddy analysis put out by hacks like the Dietary Guidelines Advisory Committee.”

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

 Many patients have given up on their health care professionals and turn to Internet sites for advice they trust. This is particularly true of diabetics who find that a low-fat, high-carbohydrate diet is not helping them control their blood glucose. As one woman wrote about her experience with a diabetes center:

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

The data suggest a serious problem in science-community interactions which needs to be explored.

Conclusions & recommendations: Our findings document a large number of such cases pointing to the need for public hearings and or conference. The community is not well served by an establishment that refuses to address its critics from within the general population as well as health professionals.

Comments
  1. Paula says:

    Hi Prof. Feinman,

    I just posted on a couple forums, telling them briefly about this initiative and directing them to this most recent post of yours for more information.

    One place I posted is to http://www.diabetesforums.com and the other is the low carb diet section of http://www.forums.about.com dealing with diabetes. I will babysit my posts at these forums to give respondents the info they need.

  2. bsc says:

    As a diabetic, I have followed low carb diets for more than five years with great success. I am sympathetic and would be pleased to help, but I am a private person and I have some questions. What exactly is being sought, what analysis will be performed and how will these resuts be used? Is there a charter for the project? Is it funded and subject to an IRB? If you seek my personal health information, will it be protected?

    thanx

    • rdfeinman says:

      The current implementation of the Patient’s Voice Project is as a pilot for a larger project that we will seek funding on. We will probably have a follow-up with a questionnaire which can be analyzed statistically. We expect to be able to ask the important questions based on the narratives that we receive. There is an option for anonymity — comments will be tied to sender by third party but because it is internet based, there is limited expectation of privacy. The rationale was originally based on willingness of people to share things on the internet. You can decide the extent to which you are comfortable making private data available or which medical records you want to keep private but might share if your narrative is challenged. For the moment, you can indicate answers to be anonymous. The IRB committee at Downstate did not require formal application for the Low Carber Forums study and we anticipate similar approval in the initial phase of the project. If some of this sounds a little vague, we are trying to find the best method as well as collecting the data. We have been very critical of the nutritional establishment which holds to arbitrary and formal methods which have the effect of not “listening to the patient.” We are grateful for any help in bringing out the facts of the problem.

  3. Peggy Holloway says:

    I have submitted my story, which is actually a family story. After seeing my grandfather and father die after horrific struggles with Type II Diabetes, following conventional medical advice, my generation and my children appear to have successfully changed our family history with low-carb lifestyles. It is a dramatic and telling story, and I hope that it may contribute positively to this exciting project.

  4. Paula says:

    This quote reminded me of what we’re (barely) living through with this gov’t-got-it-backwards diet mess:

    “The history of our race, and each individual’s experience, are sown thick with evidence that a truth is not hard to kill and that a lie told well is immortal.”

    Mark Twain, from “Advice to Youth”

    A lie, inadvertent or not, is a lie.

  5. […] group of us started talking about this a few months ago, spearheaded by Dr. Richard Feinman, with Jimmy Moore, Tom Naughton, and I (the links will tell you even more about the project). We […]

  6. Dr. Feinman,

    What do you make of and how do you explain doctors like Michael Greger and McDougall who advocate a carb rich, starch-based diet for their patients?

    http://www.drmcdougall.com/misc/2009nl/dec/diabetes.htm

    • rdfeinman says:

      You could ask him. Certainly, if he can get patients to lose weight, they will get better. You can send him papers from Nuttal and Gannon, that show how well you can do even without losing weight.

      • I did ask them. No response of course. Lot’s of the usual angry nonsense from their acolytes. All I wanted was a single, well done paper that showed better outcomes for diabetics on a high starch/carb, low fat diet than from a high fat, low carb diet. They claim that a high starch, low fat diet is best. The burden of proof lies upon the claimant, no?

  7. Alfonzo Luz says:

    Dear Dr. Feinman,

    I found this on the www:

    Journal Article: Carbohydrate Restriction has a More Favorable Impact on the Metabolic Syndrome than a Low Fat Diet
    Jeff S. Volek, Stephen D. Phinney, Cassandra E. Forsythe, Erin E. Quann, Richard J. Wood, Michael J. Puglisi, William J. Kraemer, Doug M. Bibus, Maria Luz Fernandez, Richard D. Feinman
    ABSTRACT: We recently proposed that the biological markers improved by carbohydrate restriction were precisely those that define the metabolic syndrome (MetS), and that the common thread was regulation of insulin as a control element. We specifically tested the idea with a 12-week study comparing two hypocalo… [more]
    04/2012; 44(4):297-309. · 2.38 Impact Factor

    Perhaps this study sheds some light on regulation of insulin:

    Ascorbic acid is essential for the release of insulin from scorbutic guinea pig pancreatic islets.
    W W Wells, C Z Dou, L N Dybas, C H Jung, H L Kalbach, and D P Xu
    Author information ► Copyright and License information ►
    This article has been cited by other articles in PMC.
    Abstract

    Pancreatic islets from young normal and scorbutic male guinea pigs were examined for their ability to release insulin when stimulated with elevated D-glucose. Islets from normal guinea pigs released insulin in a D-glucose-dependent manner showing a rapid initial secretion phase and three secondary secretion waves during a 120-min period. Islets from scorbutic guinea pigs failed to release insulin during the immediate period, and only delayed and decreased responses were observed over the 40-60 min after D-glucose elevation. Insulin release from scorbutic islets was greatly elevated if 5 mM L-ascorbic acid 2-phosphate was supplemented in the perifusion medium during the last 60 min of perifusion. When 5 mM L-ascorbic acid 2-phosphate was added to the perifusion medium concurrently with elevation of medium D-glucose, islets from scorbutic guinea pigs released insulin as rapidly as control guinea pig islets and to a somewhat greater extent. L-Ascorbic acid 2-phosphate without elevated D-glucose had no effect on insulin release by islets from normal or scorbutic guinea pigs. The pancreas from scorbutic guinea pigs contained 2.4 times more insulin than that from control guinea pigs, suggesting that the decreased insulin release from the scorbutic islets was not due to decreased insulin synthesis but due to abnormal insulin secretion.

    I am impressed by your ability to manage all of this data.

    AL

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