A Concrete Diagnosis for CIDP

    • Anonymous
      May 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
      important contributions.
      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
      clinical judgment.
      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
      Making Process
      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 advocates–with
      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
      with impunity.
      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”.

    • Anonymous
      June 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.