How does all that misinformation online affect Lymies?

February 5, 2011 at 8:15 pm (activism, research)
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I have been working toward this for two years now, and I can finally talk about the work we’ve done with the help of many volunteers. My paper, “Competing Online Viewpoints and Models of Chronic Illness” will be published at the premier venue in my field, the 2011 conference on Computer Human Interaction. For those of you with a medical background, in my field, this is equivalent to a journal publication in impact. Needless to see, I’m very excited to have finally gotten the work to this point, and extremely grateful to all of my co-authors, who helped me with every aspect of the research and writing, and all of the lymies who helped us to collect the data on which the study is based. I could go on for a long time about the personal accomplishment this represents and what it means to me (and I may in another post), but what I want to do here is say a little about what we did.

I am not a doctor, and however much I would have liked to do so, I am not qualified to conduct research that can identify a cure or otherwise directly affect the medical experience of individuals with Lyme disease. Rather, my area of specialty is information technology, and how people interact with it. Because of this, my work focused on how people with Lyme disease use online information in the course of their illness. I specifically wanted to understand how people negotiate the competing viewpoints present online (consider the contrast between the IDSA/Mayo Clinic/CDC/Wikipedia style information and that found on websites such as CALDA and ILADS). I knew that I personally had encountered both sets of information when I was diagnosed, and as a result I ended up putting my trust in doctors who did not treat me correctly. In my study, I wanted to document what happened to others, and identify possible solutions to any problems we discovered. My next step will be to begin to implement these solutions.

So what did we find? We found many examples of people who grappled with the mix of information online. Surprisingly, the kind of information that people trusted seemed to be affected by their diagnosis experience/initial beliefs about Lyme disease: Read the rest of this entry »

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Patient Stories

April 13, 2010 at 11:28 pm (research, thoughts)
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I’ve mentioned once or twice on this blog that I’m starting to do research in Lyme disease. I had presented very early versions of this work at ILADS 2009 (in an open forum) but Sunday was my first opportunity to present it formally, in the context of a research workshop called the Workshop on Interactive Systems in Healthcare (WISH 2010).

The work I presented was based on a survey of 128 individuals with Lyme disease, from across the country, along with interviews with 21 of those people. We have far more to say about the data than I can fit here, or in the summary paper and slides we presented. But what differentiated this work from much of the other work presented at WISH was its focus on the patient viewpoint, the patient use of data, and how we can facilitate that. A lot of related studies seem to focus on a broken patient process or simply about doctors.

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Chelation?

January 26, 2010 at 9:55 pm (my-son, research, treatment)
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So, as I mentioned, my 6 year old has been diagnosed with heavy metals. In particular, he had a very high amount of lead in his urine on a “provoked urine test”. As a result, I find myself in a similar realm of uncertainty as I did when the Lyme diagnosis arrived — except that I know less about lead and chelation than I do about lyme (now). As with Lyme, there is uncertainty in the testing and the treatment. Here is what I’ve been able to find out so far: Read the rest of this entry »

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A room full of people who care about Lyme disease

October 28, 2009 at 9:09 pm (research)
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Over the weekend, I had the privilege of attending the LDA and ILADS sponsored  conferences on Lyme Disease.  I left Pittsburgh worried that I would find the three days of talks I planned to intend incomprehensible, boring, or simply overwhelming. I returned having soaked up hour after hour of information. The material engaged me in so many ways. As a person with Lyme Disease I found myself learning to understand my own condition, hearing about how doctors actually make treatment decisions, discovering with scientists new knowledge and promising possibilities for tackling the beast inside me. As a researcher studying Lyme disease I was delighted to discover other social scientists studying its effects in the schools and in the workplace, and to make contact with possible collaborators in the activist and scientific communities. Perhaps most surprising was the power I felt from being in a room full of other people who all understood, cared about, and had been forever changed by their encounters with Lyme Disease.

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New hope for Chronic Fatigue patients

October 12, 2009 at 9:29 am (research, thoughts)
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When you live in the nether world of questioned diagnosis, you spend a lot of time wondering if perhaps those doctors who say the problem is in your head, your lifestyle, and your diet are right. In my case, I was lucky to have a variable enough illness that I was constantly reminded that I was not the cause — as soon as I felt better I did more, no matter how short a time it lasted. I never had to think about it, plan it, or convince myself to do so, I just DID.

Lyme disease patients at least have the existence of a known pathogen to hold onto when they fight the external discrimination, and associated internal questioning, that characterizes their disease. For those with Myalgic Encephalomyelitis (known popularly as Chronic Fatigue Syndrome), until this week, that did not exist. On October 8th, the journal Science published an article by Lombardi et al. titled “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome.” (also see this discussion by the author of Osler’s Web). Pamela Weintraub, in her blog Emerging Diseases reflects on the continued efforts of physicians and researchers to label diseases like Lyme disease and Myalgic Encephalomyelitis (ME) as pyschiatric illnesses. This is a form of discrimination and institutionalized myopia that has systemic negative affects on patients. It stifles research, reduces access to treatment, and forces patients who are already fighting a difficult disease to also fight for respect. Perhaps worst of all, they must devote mental and physical energy to all of this, while simultaneously fighting the internal battles necessary to keep believing in themselves despite a lack of definitive anything and constant encounters with naysayers. Read the rest of this entry »

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Sexual transmission of Lyme Disease

August 13, 2009 at 7:08 pm (infection, research)
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I’ve been wondering on and off for some time whether I need to worry about sexual transmission of Lyme disease. Now I’ll be honest, although I love my spouse very much, it hasn’t been that much of an issue in the last year or two. But I’m starting to feel a little better, and the last thing I want to do is create a husband who can’t get off the couch just when I’m able to enjoy him.

Humor aside, I decided to do a literature review for myself on the issue. Not being an expert in this field, I am trying very hard to avoid much interpretation these results, but here’s a raw dump of what I found (note: Bb, and Borrelia Burgdorferi both refer to the causative agent of Lyme disease, the spirochete Borrelia Burgdorferi and (in some cases) related strains that also cause Lyme disease). Read the rest of this entry »

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Hearing talks now available online

August 5, 2009 at 7:42 am (research, treatments)
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Quick update to my previous post: you can now view a video archive of the IDSA hearings online here: http://webcast.you-niversity.com/idsaArchives/

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Landmark hearing with excellent talks

July 31, 2009 at 9:36 pm (research, thoughts)

Yesterday was a landmark day for the Lyme community: An opportunity to try to sway the Infectious Disease Society of America (IDSA) toward a more generous description of Lyme disease and its treatment. The IDSA guidelines are curretnly used to guide the treatment decisions of many doctors from specialists (especially Infection Disease doctors) to family physicians. Insurance companies also sometimes use these guidelines to determine whether to pay for treatment. “Lyme Literate” doctors (termed LLMDs) and groups such as the International Lyme and Associated Diseases Society (ILADS) oppose these guidelines, and it gets pretty nasty at times. I’ve termed this the “lyme wars” in this blog and have a page full of links that illustrate both sides of the issue. Much of my first year with lyme disease was spent trying to figure out what to believe in the face of passionate researchers from both sides writing articles that argue for each perspective, passionate doctors from both sides telling me not to believe the other side, and passionate organizations from both sides fighting to teach patients and doctors alike what to believe so that they will not be mistreated.

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I’m giving a talk …

April 27, 2009 at 7:13 am (research)
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Having Lyme Disease has been a life changing experience for me, something I am sure I am not alone in. For me, this has meant many personal changes such as doing a better job of prioritizing those things that are central to my quality of life regardless of how I feel, managing stress, and sleeping more. It has also meant changes at work — specifically, I have begun to think about how I can leverage my work to improve our understanding of Lyme Disease. Now, I am not a doctor or microbioligist, so I cannot easily contribute some of the things I most wish for — research into the lifecycle of this disease, the best ways to kill it and so on. But as technologist, there are things I can contribute to understanding and supporting the patient experience.

My work in this area is just beginning, and has been facilitated by some of the readers of this blog (thank you!).  I have been given the opportunity to talk about some of what we are doing. I am going to be speaking at the Greater New York Lyme Neuroborreliosis Support Group on Saturday, May 2nd, at 12:00. The location is the NYU Langone Medical Center, NY, Auditorium B 550 First Avenue, New York NY.

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