LYMEPOLICYWONK: Patient Centered Research and Lyme—An idea whose time has come?
A friend forwarded to me the audio link (at the end of this blog) of an interview with Dr. Iain Chalmers of the Cochrane Collaboration—a leading voice in evidence based medicine. Dr. Chalmers, who is interested in the patient perspective in evidence-based medicine, made a number of points that I think you will find of interest. First, he said, research agendas should be driven by patient concerns rather than by researchers’ preferences. There’s an interesting idea. Then he said that physicians have to make a decision today and cannot wait for the research. That sounds right, too. He went on to say that when you are looking at outcomes, the clinical experiences of those who receive the intervention or treatment are the key—these experiences are not the soft data, they are, in fact, the “hard” evidence. Finally, he noted the difficulty of getting “disappointing” results published. Disappointing results can be trials that don’t turn out as planned or that contradict what the researcher expected. His last quote regarding academic researchers in particular stuck with me and should resonate with the Lyme community: “If you have a cherished hypothesis which your career has ridden on for the past 20 years and someone does a really killer experiment which actually shows that you have been wrong all that time, the natural reaction, the human reaction is to say “there must be something wrong with it”—“I can’t have been wrong all these years”. It all sort of takes me back to the Embers monkey study and the complaints of Dr. Baker’s (formerly of the NIH and now the head of the American Lyme Disease Foundation, which many patients believe is a front for the Infectious Diseases Society of America).
You may recall that Embers and colleagues found persistence of the Lyme bacteria in monkeys following the Klempner “long-term” antibiotic treatment protocol (hotly contested by Dr. Baker who oversaw the research trial when he was at the NIH), persistence following the IDSA 28 day antibiotic treatment regimen, and faulty testing. If you’ve missed the fireworks, they’re here.
If you want to listen to Dr. Chalmers’ interview, it is here.
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 lbjohnson@lymedisease.org.
As a former researcher (ecology), I was always puzzled by the extent of denial within the medical community. It was my experience that if you designed and carried out a good study, and it went against prevailing paradigms, it was MORE likely to get published and in turn be picked up by other researchers for further study. It was true that some who had spent years arguing the prevailing theories would vigorously disagree with you (in the form of written counter point arguments, at annual meetings etc..).
I guess the big difference is that the people with the prevailing theories were not in charge of funding, were not in charge of the publication process, and did not try to convince the universities that scientists who did not agree with them should not be allowed to practice science anymore
. night sweats are SO fristratung ive had them for about the past 6 months. my lyme doc blames it on Babesia and it is common with hot flashes, but we have so much going on in our bodies its like it really could be anything. just focus on resting and doing whats right for you. it will get better. lots of love to you. you rock and this disease is making you so strong and when youre better you are going to be amazing xoxo
Am I surprised at this, no. Will this publication be of any help to us (chronically ill patients who have lost so many years of our lives), I hope it does.
Can these facts finally give us a class action law suit? If for no other reason then to bring down the wall of ignorance and disgrace that the IDSA has been hiding behind. It is long overdue.
I have lost all, and nearly lost my life. Hanging on to see the day when this mess is set right.
I have had Lyme for 3 years. Persistent and new neuro symptoms prompted me to join this group and my state’s support group. (Going to my first meeting next week, cannot wait!!) I noticed that the American Lyme Disease Foundation website Q & A section was total malarkey and echoed the IDSA as well. Loved this article; I am a Graduate student studying psychology, and the idea to approach research based on the patient’s concerns reminds me of the revolutionary idea by psychologist Carl Rogers. He proposed the concept of client-centered therapy, during which the therapists focus is the client, rather than standardized psychotherapy protocol. That idea parked humanist-based therapy, and remains very successful decades later. Perhaps this approach could work in some aspects of medical practice as well; I have been told by countless doctors that there is nothing wrong with me (because it is IMPOSSIBLE for me to have symptoms after my 28 days of doxy three years ago.)
IMO, Lyme Disease is the most COMPLEX disease that could pbsoisly exist. In my case (which is not that severe) I’ve seen a lot worse, I have quite a few illnesses that are most likely an effect of Lyme on my body: arthritis, sinusitis, anxiety and OCD, eye problems and there could be a few more but don’t have a diagnose. xx Alex