More on the Patient-Clinician Partnership

Lyme patients aren't the only ones being given short shrift in medicine. They also aren't the only ones reaching out for medical advice on the Internet. Dave deBronkart found out about an experimental treatment for his cancer by speaking to other patients online, and he talks about it on Ted.com . Yes, the treatment was successful.

In The Widening Circle, Lyme pioneer Polly Murray wrote,

The preponderance of support groups and of patients acting individually as their own advocates is symptomatic of a health care profession that has become so stressed and fractured that the opportunity for a successful doctor-patient relationship has been compromised.

She goes on to quote Dr. Howard M. Spiro:

The more medical science advances, the more the art of medicine seems to decline...

And finally, she cites Dr. Richard J. Baron:

We must learn to hear our patients as well as their breath sounds; after all, what are we listening for?

When the diagnosis is bleak, and when perhaps there are more cutting-edge treatments out there than one's local doctor or hospital knows, reaching out to that great Internet "cloud" can reap rewards, if only to lend an ear of sympathy. If clinicians aren't providing that service anymore, then they should not be surprised that patients will look elsewhere to find it.


Murray, P. (1996). The Widening Circle: A Lyme disease Pioneer Tells Her Story. NY: St. Martin's Press, p. 289.

Spiro, H.M. (1986). Doctors, Patients, and Placebos. New Haven, CT: Yale University Press, p. 28.

Baron, R.J. (1985). An Introduction to Medical Phenomenology: I Can't Hear You When I'm Listening, Annals of Internal Medicine 103, p. 609.

Patient Advocacy, Micro and Macro

Michael Lockshin, MD and his patient Alida Brill wrote a book about the physician-patient partnership -- how it feels to be a clinician and a patient working together in empathy to decide on patient care. In this case, the patient (Ms. Brill) was suffering from the autoimmune disease Wegener's Granulamatosis. I recommend their book as a good one to understand how to engage in a dialogue, not a monologue, over treatment.

But Dr. Lockshin also spent some time working at the National Institutes of Health on policy, and he had something to say about how the dialogue with patient advocates can help or hinder the advancement of their goals:

I also learned the politics of policy. I should have known, but did not at the time, that in policy decisions, when convictions are deeply held, truth does not matter unless it can be cogently sold. I repeatedly watched people present their cases truthfully but poorly and thereby lose arguments that they should have easily won. I saw people who were untruthful and wrong speak fervently and compellingly and win, and I saw that, as a result of these false arguments, misdirected policy would ensue. During my stay in Bethesda Lyme disease, breast implants, fibromyalgia, and animal research advocates and detractors found themselves unable to negotiate positions civilly. The resulting policy was at times incoherent and often ignored. (page 141)

Whether it is a dialogue between doctor and patient, or between advocate and legislator, we must strive to work together in partnership, or we might be left out of the collaboration altogether.


Brill, A. and Lockshin, M.D. (2009). Dancing at the River's Edge: A Patient and her Doctor Negotiate Life with Chronic Illness. Tucson: Schaffner Press.

Chronic Fatigue, Major Discovery

Please take the time to read the blogs from Pamela Weintraub on Psychology Today's website (she is the author of the 2008 Lyme book, Cure Unknown), and Hillary Johnson's blog (she is the author of the book on the investigation into chronic fatigue syndrome, Osler's Web). They talk about a recent discovery, published in the October issue of Science magazine (reported online at Medical News Today, that pinpoints a retrovirus as a major cause, perhaps the cause, of chronic fatigue syndrome (also called myalgic encephalomyelitis).

Remember chronic fatigue syndrome? It was called the "yuppie flu" 20 years ago. People who had it were called malingerers or worse.

Today, some researchers want to lump chronic Lyme, chronic fatigue, fibromyalgia, and Gulf War syndrome under one label: chronic multisymptom illness. As Ms. Weintraub points out, if chronic fatigue seems to have an infectious origin, might not these other conditions also? Could a retrovirus be a player in chronic Lyme? Yes, there is evidence that retroviruses can be tick-borne, though a link between Ixodes ticks and this particular retrovirus has not yet been made. It is just one more intriguing piece of the puzzle.

Dr. William Schaffner of Vanderbilt University told the New York Times,

"My first reaction is, ‘At last,’ ” Dr. Schaffner said. “In interacting with patients with chronic fatigue syndrome, you get the distinct impression that there’s got to be something there."

Upon hearing so many similar histories from chronic Lyme patients, I would tend to say the same thing.

Grady, D. (2009). Virus is found in many with chronic fatigue syndrome [Electronic version]. New York Times, October 8, p. 18. Retrieved October 11, 2009 from
http://www.nytimes.com/2009/10/09/health/research/09virus.html?_r=1&em

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.

To Each His Own Summit

I had the opportunity to speak with Ed Webster, who had climbed Mount Everest, including an assault without oxygen or sherpas, in the 1980's. We talked for awhile about his climbs, the last of which resulted in the loss of several fingers and toes, due to a moment of taking off his outer mittens to take a photograph. It called to mind how often the punishment does not fit the crime in life.

Ed is now living in Maine, and we got to talking about Lyme disease. He was truly moved to hear about a family member of mine who has struggled, and mentioned that he had two friends who have also been afflicted. This man, who has had to completely work around his own physical loss, and I'm sure is reminded of it daily, had compassion for others who struggled daily with a disease. We shook hands, we hugged, and I am a little more thankful for the things that I have today.

Happy Independence Day.

Webster, Ed. Snow in the Kingdom: My Storm Years on Everest. 2000

The Heart of Healthcare

With all the interest in healthcare reform these days, I found this quote from the Annals of the New York Academy of Sciences in 1994 most interesting. It was written by Robert O'Brien, CEO of Empire Blue Cross and Blue Shield of New York. He writes:

The art of medicine as practiced by the excellent physician is not just the recall of technical data from medical texts and journals. It is the synthesis of this information, the power of deductive reasoning, and the skill of active listening in a physician-patient encounter. The excellent physician has the intelligence, intuition, and interpersonal skills and respect for the patient that no battery of tests or detailed medical records or clinical protocols can replace. When the physician brings all these attributes to the encounter, medical quality outcomes can then be measured: early and accurate diagnosis, appropriate medical treatment, effective use of resources, and continuity of care after the initial encounter.

Cost-effective medicine is bound by excellent physicians knowing their patients. And superceding cost-effectiveness is successful outcome -- the patient is healed -- also bound by knowledgeable healthcare practitioners knowing the science and knowing the patient.



O'Brien, R. (1994). The doctor-patient relationship. Beyond the Crisis: Preserving the capacity for Excellence in Health Care and Medical Science, Annals of the New York Academy of Sciences 729, 22-26.