A Concrete Diagnosis for CIDP
AnonymousMay 30, 2007 at 12:17 pm
[B][I]It would be in my opinion tantamount to insane that a patient would wish to have this troubling condition I have learned to be known as CIDP. At first it was pulling teeth to acquire the much less expensive ivy and oral antibiotics but yet a hefty sum of money for an individual without any form of insurance all because the medical community is divided in its opinion over certain diagnosis. Today I am having the same problem with regard to getting IVIG prescribed.
For all of us who fall into that grey area of diagnostics I came across an article by Dr. Norman Latov from the weil school of medicine Cornell university. I wish that the medical community would take a long hard look at itself and recognize that it is time to move back to basics and make it about the patient and what is best for the patient not for the colossal egos and lack of consensus within themselves and certainly medicine is not about driving Bentleys but rather about attending to the care of those that are sick. I hope in all consciousness the following excerpt gives the courage to some of us out there to stand up to those that come between you and your treatment.[/I][/B]
EBGsvs. BestAvailable Evidence
Evidence-Based Guidelines: Not Recommended
Norman Latov, M.D., Ph.D.
18 Journal of American Physicians and Surgeons Volume 10 Number 1 Spring 2005
Traditionally, medical practices were proven through
reproducibility and predictability, rather than by controlled
trials, which are relatively new to medicine, complex, and
costly.Aphysician would report a new observation and, if it was
reproduced and confirmed by others, it would become general
practice. This allowed rapid progress; even physicians with
limited resources, working alone or in small groups, could make
Such “anecdotal” evidence is responsible for most human
scientific progress, including the discovery of the wheel, fire,
rotation of the planets, gravity, the medical examination,
anesthesia, penicillin, aseptic technique, and just about everything
else. If controlled trials were required in every instance, it would
have slowed progress to a trickle. It would be particularly foolish to
require that all current procedures or treatments, even if their
benefits are obvious, be subjected to controlled trials. We would
waste valuable resources merely to justify EBGs, and probably get
no new or important information.
Controlled trials would also be unethical in situations in which
they would deny patients available care. Requiring that such trials
be conducted for rare diseases or generic drugs is also unrealistic, as
there is no one to pay for them.
For practice guidelines to be useful, they need to consider the
best available evidence, including that from controlled trials, case
series, and case reports. They must also allow for clinical
experience and judgment, and the opinions of others, to help the
physician decide the best care for the individual patient.
As EBGs are based on controlled trials, they are more restrictive
than is practical in routine clinical practice. In making a diagnosis,
for example, controlled trials require strict inclusion criteria, with
few confounding variables. In clinical practice, however, patients
have varied presentations, and the physician has to decide the most
likely diagnosis, even if research criteria are not met.
With respect to treatment, a physician considers all the available
therapeutic options, based on information from controlled and
uncontrolled studies, as well as experience and clinical judgement.
EBGs, however, offer too few options; they may be suitable for
clinical research, but not for clinical practice.
Agood example of how EBGs distort the decision process is the
recently issued practice parameters for the Guillain-Barré
syndrome. The guidelines recommend treatment with intravenous
immunoglobulin (IVIg) for nonambulatory patients, but do not
recommend earlier intervention in progressive cases to prevent loss
of ambulation, even though the treatment can limit the disease and
prevent permanent damage. This is akin to withholding antibiotics
from patients with worsening infection until they become septic.
Other recommendations could not be supported, as the trial only
included nonambulatory patients, and although timing of treatment
was not examined, strict EBGs allow neither common sense nor
Lacking adherence to the evidence-based rules, the process of
developing practice guidelines becomes haphazard, with some
therapies recommended, and others rejected, based on political
correctness or sheer frustration, rather than agreed-upon criteria.
EBGs Restrict Care and Distort the Medical Decision
The Impetus forEBGs
This drive toward evidence-based medicine probably
represents a convergence of influences, including Managed Care
Organizations (MCOs), which need to develop practice guidelines
to control costs; the growing emphasis on clinical trials in
academia; and the diminishing role of practicing physicians in
shaping medical policy. More than ever, it’s important for national
physician organizations to represent the needs of practicing
physicians, as well as those in academics.
Proponents of EBGs argue that the guidelines are meant to be
educational: that they do not restrict physicians options, that
many reputable organizations have adopted them, and that expert
opinion depends on who is asked. However, it is foolish to think
that the guidelines don’t restrict options, even as MCOs use them
to decide coverage.
If EBGs are only meant to be educational, why promote their
adoption? Unquestioning adoption of EBGs by many professional
organizations proves that we must be more vigilant in monitoring
their policy decisions. The zealousness of EBG advocateswith
their apparent willingness to abandon our hard-won knowledge and
heritage in favor of a dysfunctional methodology that defies
reason is particularly troublesome.
EBGs are a divisive force, creating uncertainty and mistrust,
and undermining confidence in physicians and our medical system.
EBGs can be used either to accuse physicians of withholding
therapy, or of prescribing unnecessary or unproven treatments.
Behind the façade of EBGs, MCOs can determine medical policy
Our professional organizations need to lead the way in
asserting the need for physicians to exercise independent
judgment on the basis of the best available evidence in real clinical
situations. Managers must not be permitted to define what
constitutes evidence, or to brand any method other than a
controlled trial as “unscientific”.
AnonymousJune 20, 2007 at 10:03 am
I was just catching up on reading some of the older posts that I have missed on the Forums, since I have been off of the Forums a lot lately.
I just read your recent posts, about how much trouble you are still having getting treatment. I don’t have solutions to the obstacles you are facing, but wanted to encourage you and give you some moral support.
I really commend your tenacity and positive attitude. You have taken a very intelligent approach to tackling problems one by one, and I have no doubt that you will succeed in getting medical attention and treatment. I’m just so sorry to hear that it is taking so long for you to get what you need.
The article you posted is profound. I’ve printed it and will be saving it to give to any practitioners I encounter who need to see it.
You will be in my prayers. Please keep us updated on your progress.
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