We were asked on another forum who we are and what is our agenda. "Agenda" has become an almost negative word, hasn’t it? Even so, the question is one that gets you to thinking. Here is our reply.
We began as a group concerned about under-treatment of borreliosis, the infection of which the poorly termed "Lyme disease" is a subset. After hearing of hundreds, maybe thousands of people abused by the U.S. medical system, and thinking about root causes, we realized Lyme disease is but a small part of the big problem: a medical-industrial complex dedicated to the interests of insurance companies, drug companies, physician groups, and hospitals. The medical care of our citizens is often sorely neglected. This is more than an issue of responsibility, decency, morality, and ethics. It is profoundly stupid.
We don’t feel focusing on one condition is going to do much. Disease factionalism is a tool, used intentionally or not, that keeps those not wanting reform in control. So, if we have an agenda, it is to get this changed. But, here is where a goal can sabotage the most expedient tactics. Most people, reading something like the previous paragraph, will click onto a new website page before finishing the second sentence. A story about a sick child down the street who needs a $20,000 operation, on the other hand, captivates most people’s attention. Yes, some of us have family members with health problems. I have health problems. Yes, some of us have been treated for Lyme borreliosis and associated infections, with dramatic results. No, the treatments have not been entirely curative. Yes, we are convinced if our medical systems were not sleep-walking through a fantasy world we would be much better. A single person’s medical problems can be quite interesting, especially if you think you have the same thing. And, especially then, it often elicits a response. But, all these self-identifying condition and disease groups are not going to get most people’s, maybe not anyone’s, problems fixed. It will take unified action from all the medically ignored and mistreated.
We have heard individual accounts of stories almost identical to ours hundreds, maybe thousands of times. As we show on our website, there are millions with persisting conditions who probably could be helped by treatment for under-treated infections. As to how one gets the overwhelmed, unmotivated public interested, there probably is not a single answer except that it it going to take some courage, consideration, and hard work. Would we be doing what we do if family members had not gotten sick? I would like to think perhaps that I am such a decent, informed, and compassionate person that the answer is yes, but realistically, probably no.
I hear stories of how efforts of a few people can make a big difference. I think it was Malcolm Gladwell who wrote recently that a few high school friends started the lunch counter sit-ins that resulted in major civil rights changes. He also pointed out that it took an intense personal relationship to get them started, something increasing rare with our digital technologies. I am convinced that getting help for one person, one disease, one deprived group, maybe even one country, is not going to fix the disastrous state of medical care. We are quite interested in getting the best citizen activists available together to work on this.