Who Can We Trust?

For most of us, medical care has been taken for granted, and the authority of licensed medical practitioners unquestioned.

When you or I go to our family doctor who correctly suspects some type of infection, the medical protocol is for the licensed doctor to consult the accepted procedures as outlined in the enormous IDSA’s (Infectious Disease Society of America), and then follow the protocol with confidence.

Unfortunately for those of us with chronic Lyme disease; all of our symptoms, the intense unbearable pain and the clear evidence of disease – the IDSA does not acknowledge the existence of chronic Lyme disease. The IDSA guidelines are clearly no longer appropriate for handling Lyme disease due to the mounting evidence of the morphic and antibiotic-resistant disease. Well, it took the medical community a long time to figure out Lyme’s cousin, syphilis, too.

So after mounting political pressure in Connecticut, the Attorney General, as most of you are aware, required the guidelines to be re-written due to obvious conflict of interest amongst the ruling committee.

A quote from the Attorney General Blumenfeld:

“The IDSA’s Lyme guideline process lacked important procedural safeguards requiring complete reevaluation of the 2006 Lyme disease guidelines — in effect a comprehensive reassessment through a new panel. The new panel will accept and analyze all evidence, including divergent opinion. An independent neutral ombudsman — expert in medical ethics and conflicts of interest, selected by both the IDSA and my office — will assess the new panel for conflicts of interests and ensure its integrity.”

Blumenthal’s findings include the following:

The IDSA failed to conduct a conflicts of interest review for any of the panelists prior to their appointment to the 2006 Lyme disease guideline panel;

Subsequent disclosures demonstrate that several of the 2006 Lyme disease panelists had conflicts of interest;

The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA’s oversight committee;

The IDSA’s 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group’s position on chronic Lyme disease to achieve “consensus”;

The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded;

The IDSA portrayed another medical association’s Lyme disease guidelines as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.

IDSA has reached an agreement with Blumenthal’s office calling for creation of a review panel to thoroughly scrutinize the 2006 Lyme disease guidelines and update or revise them if necessary. The panel — comprised of individuals without conflicts of interest — will comprehensively review medical and scientific evidence and hold a scientific hearing to provide a forum for additional evidence. It will then determine whether each recommendation in the 2006 Lyme disease guidelines is justified by the evidence or needs revision or updating.

However, the deadline for these revisions has already passed, and insiders are warning not to expect any major changes. We all want to hope, but there is little reason for hope in the face of reality.

As Voltaire once said,

“Doctors are men who prescribe medicines of which they know little,

to cure diseases of which they know less,

in human beings of whom they know nothing.”

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Posted on January 15th, 2010 under Chronic Lyme Disease, Discussion, Lyme News, Research and Development • Tags: Chronic Lyme disease, IDSA, IDSA Treatment Guidelines, Treatment for Lyme Disease. • RSS 2.0 feed • Leave a response, or trackback

Felipa

(1 comments):
November 6th, 2010 at 12:15 pm

Doctors are quite a different species of medical providers, especially specialists. They have had to fight long and hard to get to where they are, in most cases, and they are prepared to defend their castle regardless of the consequences. They get so entrenched in their distorted rationalizations and viewpoints that they effectually crete a “reality” bubble around themselves, quite impenetrable and harsh and cold. It is a pity that our educational process continues to endorse such ineffective, grandiose, and unreal viewpoint of medicine, and that it is engrained in these people’s soul. This attitude not only affects LD, but permeates their viewpoint and therapeutic approach to any chronic illness, especially those that they understand well or didn’t learn about in their training. The bottom line is that doctors must remember that they are not treating disease, but people who happen to have certain diseases, some with a name, some without a name, some clearly understood, some not understood at all. The art of listening to the patient, of true scientific curiosity, of open-mindedness, of humanity and compassion, of admitting that we don’t know it all – these are crucial in medical training of physicians. Otherwise, they should perhaps be called “pathologists” who treat disease and illness. There is an enormous gap between treating disease and healing. And medicine needs to do some inner soul search, and return to job of healing, no matter how humbling the process may be.

Doctors must have the courage of RE-starting their evaluation and viewpoint of LD, putting away all preconceived notions, all prior lack of and mis-information about LD, and as true scientists “look” in an unbiased way at LD. Why has there been such a negative and un-professional approach to LD? This didn’t even occur with AIDS and HIV. Could it be because patients with AIDS didn’t live long, so in the long term, they were more “cost-effective” than chronic LD? What an unethical, gruesome thought! But “cost-effectiveness”(both time and money), “evidence-based” (on what?), and “productive” are nowadays the goals of medicine, NOT healing, supporting, and listening.

Doctors must do some self-inventory if they wish to survive in the medical system. Their god-like pedestal is not a god-given right, but a privilege! It must be earned, and maintained. Doctors are expensive, don’t have time to listen, don’t listen with an open-mind (or compassionately), rely on their preconceived notions of health and disease, don’t continue to learn about emerging health issues (like the tremendous increase in vector-borne illness in the US and worlwide), and refuse to admit their lack of knowledge.

So imagine a patient already in pain, with PTSD from the abusive medical system, feeling unvalidated and mistrustful, going to see such a medical provider. Obviously, this is not going to work. It’s much like speaking in different languages, unable to understand each other, but worse yet, as the desire to understand is not there! There are no “language, interpreting lines” for the patient to use to communicate with the doctor. The laws about providing equal access and treatment do not exist for LD. The concept of “informed consent” does not apply to LD.

In effect, medicine has decided to intentionally and purposefully ignore LD, to NOT treat it as any other illness or health matter, to maintain its prejudicial viewpoint, to effectually, deny proper care to this population of patients. There is NO medical care for LD! It’s denied to LD patients! This is beyond unethical, unprofessional, and frankly, illegal. Why is it being tolerated?

In the meantime, LD patients must be armed with a thick protective wall when they have any contact with the medical system. They are submitted to discrimination, abuse, neglect, malpractice, and are denied proper care. It’s time to expose this corrupted system, and expose it as it is. Doctors are not gods; they don’t know it all, and above all, just the fact that you are a doctor, doesn’t mean that you are a healer. Healers listen, admit their lack of knowledge and mistakes, are open-minded, are compassionate, treat everyone as a unique individual with unique needs, and are honest.

Although doctors are just one arm of the medical system, namely that of “treating disease” as they have evolved, they have been placed in a very high pedestal as the leaders of health. What a predicament! Health is not just the absence of disease, but a state of wellbeing that is unique to every person. Did medicine forget about health? Did it forget about illness that is not classified as such by an antiquated, corrupt system with multiple conflict of interests?

So, for all of us who deal with LD and its devastating life effects, don’t give up. And prepare yourself before each medical encounter. Be strong, and don’t let them have the power. You have the power! You are the patient, around which all your medical care, must revolve, not the doctor! We need to remind and educate doctors about this. We have equal rights as any other patient with any other illness or health condition. We must be heard, and if they are unwilling to do so, then they have the responsibility to provide us with alternative resources and access to other providers.

Health care is our right, not our privilege. And being a doctor is not a right, but a privilege. So it’s time to look into the eyes of the beast.