As I research diabetes and the related
occupations that treat those of us with diabetes I keep making small
discoveries that are upsetting to me at least. I read several
medical blogs by doctors and read some of the blogs by diabetes
educators and a few other blogs by other professions related to the
treatment of diabetes topics. With a few notable exceptions, many
doctors, all diabetes educators, and all dietitians want us to be
complaint and stupid, letting them tell us what to do and what not to
do.
I am reading about more people on
diabetes discussion boards and diabetes forums who think like I do
and are tired of being treated this way. Even those in my local
diabetes group are now echoing these feelings. Although we tend to
all go our own way and have differences of opinion on many topics, we
are all in agreement that the current atmosphere for people with
diabetes is a lose – lose situation. While we are doing
exceedingly well as individuals, all of us have learned to ignore
anything from the USDA and the medical groups that promote and
advocate following this way of eating and nutritional advice.
Yes, we all want nutritionally balanced
meals as much as possible, but we know that we cannot depend on our
medical and related diabetes professionals to give us good advice.
They constantly repeat the same thing – whole grains, low fat, and
they will not budge from this mantra. This is what the USDA
preaches, the American Diabetes Association trumpets, and the
American Association of Clinical Endocrinologists follows. Then you
add the American Association of Diabetes Educators and the Academy of
Nutrition and Dietetics and you are hammered again and again and
again with the same boring meaningless mantra.
Fortunately, some of us have friends or
relatives that are nutritionists that are not under threat from the
Academy of Nutrition and Dietetics (AND), and they will work with us
at various carbohydrate, protein, and fat levels to help us balance
our nutrition. Their only concern is seeing that the balance of
nutrition is present. For this we listen and thank them. We also
promise to support them and stay in touch with our state legislators
to prevent the AND from slipping something through without a fight.
And they have tried, but thankfully nothing came of it this year.
The other common item most of our group
agrees about is all the studies that insist that we eat certain foods
if we have diabetes as we have decided that most of these studies are
misleading and not for us. Most of the time these studies have a
specific agenda and nothing to do with balanced nutrition or even
fair nutrition. We are tired of studies claiming red meat is bad for
us, that a specific vegetable or fruit is a super food that benefits
people with diabetes. What they do not even consider is that more
and more people with diabetes are figuring out that what works for
one person does not always work for another person. We are downright
tired of this one-size-fits-all advice that we know probably does not
work for us.
Another common agreement is the studies
that are done to prove that one medication on top of another
medication, plus additional medications added to these is the only
way to treat type 2 diabetes; we know this is not for us.. We are
disappointed that our researchers have a very limited ability to
think for themselves and that they jump to the tune of Big Pharma
every time the bell jingles. We are disgusted that our researchers
are incapable of thinking outside the box to give us something to
hope for and solutions not requiring medications stacked one on top
of another. This is one of the reasons most of us are using insulin.
We obtain better diabetes management results and have none of the
side effects associated with the oral diabetes medications.
When the researchers start calling the
tune and telling Big Pharma that their ideas are unworkable, then we
may see some innovation and meaningful studies where study
participants are everyday people and not those that fit the strict
criteria to slant the study in the direction desired. We understand
age ranges and people with other chronic diseases being eliminated
from some studies. What we disagree with is studies where people
that might be concerned about testing their blood glucose on a
frequent basis are automatically eliminated because the researchers
and the funding agencies are looking for people that do not care
about testing so that they can show a reason for limiting testing
supplies for those that want to test and maintain excellent diabetes
management.
When we think about all the money
funneled into poor and useless studies, we have to think about how
much closer we might be to an actual cure if the money had been
utilized more efficiently. Efficacy in our studies and their
usefulness should be a priority. Another topic that is a sore point
with us is universities that have results from research that is on
the cutting edge of a breakthrough and this is purchased by a
pharmaceutical corporation and that is the last we hear about it.
These are things that need to be exposed and if the research is
useless, the American public should be told. While we may not always
believe the results, because we are suspicious by nature, we deserve
to know whether it was purchased to be buried and nothing more done
with it or if it was indeed only a minor piece of the puzzle.
To this, I would say that if nothing
was forth coming in three years (or maybe longer), but no more than
five years, then rights would return to the originating university
for continued research and development. Only if some checks and
balances are put in place can we be sure that good research will not
be put in mothballs because a large pharmaceutical company wants to
make larger profits by burying promising research.
It was a little surprising that while
we have been discussing the above; a study would be published adding
to our perception of what happens. This study published in the
Journal of the American Medical Association on May 1, 2012, declares
that the majority of clinical trials are small. The study points out
there are significant differences in methodical approaches including
randomizing, blinding and even the use of data monitoring committees.
This is the largest comprehensive analysis of data in
Clinicaltrials.gov and finds that clinical trials are coming up short
of producing high-quality evidence needed to guide medical decision
making in a clinical setting.
This evidence points out the problems
we a patients will continue to face in obtaining informed information
and proper treatment of medication usage, clinical care with
application of the latest techniques and possible best treatments.
If our doctors are unable to rely on proper evidence, how are we
going to have confidence we are obtaining the best in care.
Our group does agree that there needs
to be an independent agency (or committee) that oversees all of the
study applications before they receive a penny of funds. This agency
should be independent of any pharmaceutical company, university, or
government. Where they would obtain their funds to make a modest
living is a point we have not solved. We do agree that the number
should be an odd number, but no more than fifteen members, and that
if someone is absent, an alternate could be selected. We also agree
that the members should be from retired researchers, patients, and
some non-pharmaceutical or related CEOs. Term should be limited to
five years and some replaced every year on a rotation.
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