Who are the Denialists?

In the September issue of The Lancet, several authors known for their research into tick-borne disease attacked those patient advocates, researchers and clinicians who favor treating severe cases of Lyme disease with long courses of antibiotics. Equating them with those who deny that HIV causes AIDS, they used psychologist Seth Kalichman's words in Denying AIDS to describe them:

"'They are deeply skeptical of science and untrusting of government and big business. Some are surely misguided and others seem to foolishly believe that they understand everything there was to know...'.

Then they go on to re-define what Kalichman calls antiscience by including:

"we will define this antiscience outlook to also include the promotion of pseudoscience and science that has weak credibility or validity because of fundamental flaws in its design or poor reproducibility."

The article goes on to use innuendo, ad hominem attack, ad populum arguments, lack of citations for factual statements, and other logical fallacies to say that long-term treatment advocates must be wrong. But is this what Kalichman says?

1. He defines HIV denialism as a mutation of the first stage of mourning, denying the severity of the illness and the need for aggressive therapy. "The most extreme case of maladaptive denial is malignant denial, during which people completely ignore their physical condition, with potentially irreversible damage (p. 3)." This description does not define the Lyme disease advocates in the Lancet editorial. Rather, these advocates admit to a serious illness and seek therapy.
   
2. Kalichman encourages patient questioning. "Research has shown that patients who actively engage in their care and probe their providers with challenging questions actually survive longer than those who remain passive (p. 4)." "Science has made great advances when pushed by outside thinkers (p. 160)." Lyme advocates may not know everything about science or health, but many have spent years studying one subject: tick-borne disease. On the other hand, the articles of the Lancet article have also said that symptoms after short-term treatment are "the aches and pains of daily living (p. 1115)," largely a problem for women, and largely all in their heads. Who are the denialists here?
   
3. Kalichman points to the malignancy of the science/denialist debate as becoming personal: "The bickering goes on to this day....The exchanges are personal and bear no resemblance to scientific debate (p. 37)." As in the article in Lancet.
   
4. Kalichman's solution to the debate is not more debate (p. 161). Rather, it is trust. "Making science and medicine more accessible to the public will help people distinguish between real science and that which masquerades as science. Trust is also established when doctors, nurses, and other health care providers listen to their patients (p. 162)."
   

Certainly, there are extremists on both sides of the Lyme debate, as there are in almost every controversy. It is time to get past the rhetoric and on to settling some of the basic questions concerning diagnosis and treatment of tick-borne diseases. According to the Institutes of Medicine, there are still plenty of questions. Solutions will put the need for advocacy to rest.

Kalichman, S. (2011). Denying AIDS: Conspiracy Theories, Pseudoscience, and Human Tragedy. NY: Copernicus Books.

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.