LYMEPOLICYWONK: Perception is Everything—Is it Black or White: Who decides?
When science is uncertain, who decides what to do? Do patients get treated or are they abandoned and told to wait for research that, in the case of Lyme disease, may never come? I attended a conference in Spain this year at the Cochrane Collaboration. One of the speakers, Dr. Mary Docherty, pointed out that recommendations to deny care based solely on “insufficient evidence” could be inappropriate and harmful to patients. To illustrate the point, she used the example of an upper GI (gastro-intestinal) bleed. Suppose there are two treatment options, but there is insufficient evidence to support either one? Still, the patient with an upper GI bleed must be treated. To do otherwise, might risk death or serious disability for the patient. Such is the case with Lyme disease.
Studies show that patients are profoundly ill. Yet only 4 randomized clinical trials have been done and these had an aggregate of less than 105 patients in the treatment arm of the study. The studies were small, small, small. Sample sizes in the thousands or tens of thousands would be necessary to prove no treatment effect. And the studies conflicted. Some showed patients treated improved on some measures; while others showed no improvement. Some non-randomized studies show patients improve. What should we do in the face of this uncertainty? The answer to that question is not a matter of evidence, it is a matter of values. Whose values count? Whose voice matters most? In matters of science, let’s listen to the experts. But in matters of values, it is the patient’s voice that counts.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org, formerly CALDA. Contact her at firstname.lastname@example.org.
- November 18, 2011 at 3:01 pm
After 3+years with no diagnosis in Canada, I feel one of the other factors standing in the way of helping lyme patients is one simple word: EGO. Nicole is treated in the US by the best, most compassionate docs I have ever met. We are trying to educate our Canadian docs and one in particular from Nova Scotia values treating patients over lack of science. Kudos to the courageous lyme warriors!
- November 18, 2011 at 4:30 pm
At some point years ago a few highly placed and powerful men (no doubt) made a political decision that would set the course for what we now call Lyme. This was done probably as the baby boomers were just getting started.
The "decision of secrets" now haunts the children and grandchildren of those who made them. Bacteria and protozoa hitch hike back and forth, to and fro all around the globe. Sickness and pain is the burden millions now bare.
If one were to amass the education & experience of all the doctors who've simply been wrong and arrogant in their misdiagnosis of Lyme disease it would stagger mere mortals around the universe. Prioritizing business models over sworn ethics is no excuse. This too applies to the NIH and then some.
Studies mean evidence. Evidence means money. This in damages, treatment and precedent. Can we afford this?
Someone somewhere made a decision. That was to look the other way, ignore the consequences and cover their tracks. "A few little disease won't kill a country." Not on their watch anyway. So people continue to Steere the watch begun years before them. They may not know why or even that they are doing it. Lyme is not the crazy aunt in Seattle any more. It is next door and people know it.
- November 19, 2011 at 6:21 am
I am astounded that the medical profession with so much brain power can shove their heads in the sand, close their eyes, and be so ignorant to a disease that is so obvious.
I've lost my faith in the profession.
- November 19, 2011 at 3:17 pm
Chronic Lyme (serious spirochette bacterial infection, similar to Syphilis)is Borrelia/AIDS (bacterial acquired immunodeficiency disease syndrome) – leading cause of neurological, cardiac, neuromuscuskeletal and systemic complications including crippling pain and suffering, with –
1) Fraud and Deceit for (profit) "Managed Healthcare;"
2) Control population (biowarfare);
3) Concealment of accountability and transparency; for
4)Commercialism (BIG BUCKS!)
- November 19, 2011 at 7:44 pm
Thank you for being out there so ardently for those of us with lyme disease. Your article greatly encouraged me. I am so glad to hear that in Europe doctors are beginning to at least think out of the box and see long term antibiotics as a possible alternative. I wish I could say that about most doctors here. Lyme in the U.S. has become a political disease of sorts. If you even mention the word to a doctor, they think you are either malingering, psychotic or a drug user. I wish that doctors would see us as what we are, just really sick patients who need their help.
I was diagnosed with neurologic lyme disease in 2001. I am a Clinical Laboratory Scientist and have worked in the medical field for over 30 years. I still had to fight to be diagnosed. When I told my doctor what I thought I had, she refused to run even the most basic test. "There is no lyme disease in California," she said. I was finally diagnosed thanks to the wonderful doctor who did my spinal tap and ordered the test. I was one of the lucky ones whose test actually came out positive. I was so sick that I spent over three years completely housebound.
However, I am one of those patients who has greatly improved with long term antibiotics. I would say I have about 80-85% of my life back. My infectious disease doctor allows me to stay on antibiotics because when I stop them, my disease comes back with a vengeance. I must say I haven't had any major problems from the antibiotics. I now have a life! That is what most lyme patients want, the possibility to regain their lives. I think we all deserve that option.
As long as infectious disease doctors like Dr. Steere, are in charge of the Lyme Guidelines, I feel that there will be little research. They have shown us that they are happy with the status quo. I agree that for these doctors it is a case of EGO. They want to be in charge. They have turned a deaf ear on the latest research and chosen to leave the guidelines the same as before. Only now are they beginning to realize that this disease is majorly under-reported and it is exists everywhere. The cat is out of the bag now
- November 23, 2011 at 9:30 am
"I know that most men, including those at ease with problems of the greatest complexity, can seldom accept even the simplest and most obvious truth if it be such as would oblige them to admit the falsity of conclusions which they have delighted in explaining to colleagues, which they have proudly taught to others, and which they have woven, thread by thread, into the fabric of their lives."
– Leo Tolstoy
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