Edited for accuracy, I hope

The official webcasts, transcripts, and supporting documentation from the IDSA Lyme guidelines testimonies are now available on the IDSA website. If the little I looked at is any indication, the webcasts are quite understandable, but the official transcripts are awful.

I read the first page of the first speaker (Tina Garcia) while listening to the webcast, and found at least 10 errors on the first page of the transcript. Some of these errors affect the meaning of the presentation, and other times they affect its impact. On 3 occasions on the first page of the text, the transcriptionist decided the speech was "indiscernible," yet I had no trouble understanding what was said in all three instances, while listening on my computer without watching the video and without wearing the hearing aids that correct my mild-to-moderate hearing loss. In Tina's transcript, the transcriptionist could not discern the words "egregious," "I awoke feeling as though" and "bicillin."

Later in the document (p. 3), the phrase, "that bring them close to death's door" became "that bring then close to death store." On yet another page (p. 2), her description of what infectious diseases doctors were saying about long-term treatment was taken out of quotes, making it look as if she herself thinks that long-term treatment is "of no benefit and may be harmful."

My observations are based on just one text. I hate to see what is in the rest. Someone at IDSA should review the transcripts for accuracy. I think we all would expect nothing less of an 8,000-member organization representing the scientific and medical communities. Let me be clear: I am glad for the webcasts, but disappointed in the "official" transcripts.

There is plenty to disagree about when it comes to tick-borne disease, but reasoned discourse is not possible when misrepresentations abound. I truly hope this post becomes obsolete as IDSA notes their error and takes steps to correct it.

Whose evidence is it based on?

One of the arguments that continually came up in the IDSA Lyme guidelines hearing was that of using evidence-based medicine (EBM) in the treatment of Lyme disease. Part of EBM requires the healthcare professional to be apprised of the most authoritative studies for the treatment of a particular condition, in order to give the best patient care. This is laudable in all of healthcare, including Lyme disease. But it is only part of what EBM is. According to the Centre for Evidence-Based Medicine, EBM is a fusion of:

• best research evidence, especially that derived from relevant patient studies
• clinical expertise, emphasizing the healthcare professional's experience with the disease and with the patient
• patient values, which may include variables such as personal preference, lifestyle needs, religious convictions, literacy, compliance, and cost

Dr. David L. Sacket, one of the fathers of EBM, and his associates had this to say about the practice of EBM:

The practice of evidence based medicine means integrating individual clinical expertise with the best available external clinical evidence from systematic research. By individual clinical expertise we mean the proficiency and judgment that individual clinicians acquire through clinical experience and clinical practice.... Evidence based medicine is not "cookbook" medicine. Because it requires a bottom up approach that integrates the best external evidence with individual clinical expertise and patients' choice, it cannot result in slavish, cookbook approaches to individual patient care. External clinical evidence can inform, but can never replace, individual clinical expertise, and it is this expertise that decides whether the external evidence applies to the individual patient at all...

When it comes to an emerging diseases such as tick-borne illness, true evidence-based medicine would be welcome, but it should be noted that the current few studies using too few patients with only a few treatment options might not pertain to the many ways in which a patient may manifest the disease or respond to treatment. According to EBM, in such cases, the clinician's judgment and the patient's values should be allowed to prevail.

Sacket, D.L., Rosenberg, W.M.C., Gray, J.A.M., Haynes, R.B., and Richardson, W.S. (1996). Evidence based medicine: what it is and what it isn't, British Medical Journal 312, 71-72. Retrieved September 7, 2009 from http://www.bmj.com/cgi/content/full/312/7023/71 (free registration required).

See also Dr. Daniel Cameron's testimony at http://idsociety.org/Content.aspx?id=15026 and his article, "Generalizability in two clinical trials of Lyme disease" in the October, 2006 edition of Epidemiologic Perspectives and Innovations.