New ME/CFS Diary at Daily Kos


A shadow of my former self

Welcome to the forum. I read this piece and some others you posted at Daily Kos, which are very good IMHO.

Someone posted on Freedman's piece in The Atlantic on Ioannidis, but few on this forum joined in the discussion of the very concrete implications and consequences this has had and still has for us.

After reading your pieces I was naturally curious about your agenda (I have become a jaded, skeptical person over the years, so forgive my forthrightness), especially because this was post #1 for you on this forum. Who exactly is/are in The Serrano Group? Was it yours or a family member's unfortunate personal experience with illness that led you to this line of inquiry? If so, I wonder, how does one get the uninterested, unmotivated public to consider the issues and take them seriously? Have you given these questions thought?

Would love to hear more about your experiences.
Sorry I missed your reply in the holiday rush. Asking about "agenda" is interesting. I had hoped that the information on our website would explain this.

As we say there, we began as a group concerned about undertreatment of borreliosis, the infection of which the poorly termed "Lyme disease" is a subset. As we try to explain on the website, after hearing of hundreds, maybe thousands of people abused by the U.S. medical system, and thinking about root causes, we realized borreliosis is a small part of the big problem: a medical-industrial complex dedicated to the interests of doctors, hospitals, insurance companies, and drug companies. There an astounding stupidity, leaving aside issues of decency, morality, and ethics, as to how the U.S. handles medicine. We don't feel focusing on one condition is going to do much. Disease factionalism is a tool, intentionally used or not, that keeps those not wanting reform in power.

So if we have an agenda, it is to get this changed. Here is where the tactics contradict the goal. Most people, reading soemthing like my previous paragraph, probably click onto a new website page before finishing (well, maybe not at this site, but in general). A story about a sick child down the street who needs a $20,000 operation captivates most people's attention. Yes, I have family members with health problems. I have health problems. Yes, we 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. 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 underrtreated infections.

As to how one gets to the uninterested, unmotivated public interested, there probably is not a single answer except that it it going to take some courage, consideration, and hard work. Would I be doing what I am doing 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 evenone country, is not going to fix the disastrous state of medical care.

So, let's see what we can do. I don't know much about this site, so I am going to do some looking around. Thanks for the inquiry.