http://seranogroup.org/index.php/site/ideas/ Ideas from The Serano Group en jspinhirne@seranogroup.org Copyright 2013 2013-05-07T23:36:41-08:00 http://www.seranogroup.org/index.php/site/entry/system_maintenance/ http://www.seranogroup.org/index.php/site/entry/system_maintenance/#When:23:36:41Z There is a planned system maintenance on May 21, 2013 at 4am PDT.This is only a routine maintenance. Read John Stokes’ book. A modern review of syphilis   Other resources: A journal article comparing T. pallidum and B. burgdorferi Books by Paul Ewald on persisting infections: Plague Time: The New Germ Theory of Disease Evolution of Infectious Disease 2013-05-07T23:36:41-08:00 http://www.seranogroup.org/index.php/site/entry/lyme_borreliosis_tests/ http://www.seranogroup.org/index.php/site/entry/lyme_borreliosis_tests/#When:17:34:12Z How good are they?Get sick and you are filled with uncertainties. Did I catch something? How long have I had it? How bad is it? Am I going to have more problems? How do I know when I am over it? The questions go on and on. It gets harder because, real-world, nothing guarantees every disease has to have a clear progression following a neat, concise course. Usually, the easy diseases are acute. You suddenly get sick. You get better in a week or two. The illness matches the textbook description. Your symptoms match those in the textbook. If you get an infection, both you and your doctor would like it to be one of the easy ones. But, real-world, some diseases are easy and others not. Lyme disease, more correctly, Lyme borreliosis, is one of the worst. Symptoms can come and go and may vary greatly from one individual to another. Some symptoms can go into a period of quiescence and reappear after an accident or operation. Other microbes can affect the course of the disease. Different individuals have varying responses to treatment. Unfortunately, nothing messes up a complex disease more than a bad case of politics. 2011-05-30T17:34:12-08:00 http://www.seranogroup.org/index.php/site/entry/maureen_dowd_is_going_to_talk_to_her_doctor/ http://www.seranogroup.org/index.php/site/entry/maureen_dowd_is_going_to_talk_to_her_doctor/#When:21:21:53Z There are hard things to talk about. Then, there are really hard things to talk about.On April 12, 2011, Maureen Dowd wrote about her brother who died a few years ago from what might have been  a hospital-acquired infection. She reflects on how hard it is to confront another adult who is doing something reckless, or just plain wrong, especially when they are a professional. It is particularly hard when that professional is a doctor. She quotes Elizabeth Cohen: “There are all sorts of reasons we default to being quiet,” she said. “It is general etiquette not to correct another adult, especially when this is their profession. But when the consequences are so grave, you have to summon up your courage.” Dowd talks mostly about getting doctors to wash their hands, not exactly a controversial or complex medical issue. But, if people are so reluctant to confront a doctor about something so simple and obvious, just how will the patient-doctor encounter go for a complex and less obvious subject? And, how much will the sick or injured pay if they don’t? 2011-05-04T21:21:53-08:00 http://www.seranogroup.org/index.php/site/entry/who_we_are/ http://www.seranogroup.org/index.php/site/entry/who_we_are/#When:19:02:29Z 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. 2011-01-15T19:02:29-08:00 http://www.seranogroup.org/index.php/site/entry/good_medical_news._now_what/ http://www.seranogroup.org/index.php/site/entry/good_medical_news._now_what/#When:19:05:47Z There was good medical news yesterday. Let’s take a walk through ME/CFS, XMRV and MS, CCSVI… In 1995, Paolo Zamboni, an Italian surgeon, did not accept common medical answers when his wife was diagnosed with multiple sclerosis. He reviewed the literature instead of relying on current rote guidelines and found promising, yet abandoned theories. One involved iron accumulation in the central nervous system. Zamboni, who specializes in vascular problems, realized that obstruction of blood flow away from the brain could be causing the iron issue. After radiological imaging showed obstruction in his wife’s jugular vein he performed balloon angioplasty—a simple, well-understood procedure— with remarkable results. Her MS symptoms rapidly resolved and did not return. The promise for MS sufferers did not go unnoticed. Chronic cerebrospinal venous insufficiency (CCSVI) appears to be an important, sometimes primary, cause of MS symptoms. Clinics providing surgical correction to CCSVI are being opened in medical tourism sites worldwide. In October, 2009, researchers published a paper demonstrating a correlation between xenotropic murine leukemia virus-related virus (XMRV) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). They found 67% of ME/CFS suffers were positive for XMRV and only 4% of healthy subjects were positive. Government agencies, particularly the Centers for Disease Control, would be expected greet news like these reports with their full support and resources. But something much different happens—almost invariably. 2010-08-25T19:05:47-08:00 http://www.seranogroup.org/index.php/site/entry/idsa_confirmed_as_useless/ http://www.seranogroup.org/index.php/site/entry/idsa_confirmed_as_useless/#When:22:27:16Z The IDSA reviewed their egregious guidelines for Lyme disease and found them just fine.In an expected move, the IDSA confirmed their inability to do more than offer cookbook solutions to a complex biological and medical problem crudely termed Lyme disease. Their ideology and dedication to self-interest prevents them from offering a modicum of logic or even common decency. Citizens need to remove the special privileges and funding we have granted their corrupt organization. Their subterfuge does not deserve your attention, but if you must look here. 2010-04-22T22:27:16-08:00 http://www.seranogroup.org/index.php/site/entry/under_our_skin_in_oregon/ http://www.seranogroup.org/index.php/site/entry/under_our_skin_in_oregon/#When:18:29:35Z The documentary film, Under Our Skin, had record attendance in Portland, Oregon.The Serano Group attended four screenings of the theatrical release of Under Our Skin at the the Hollywood Theatre in Portland, Oregon, September 26 and 27, 2009. A well produced documentary film can convey much in a short time, with great impact. The director, producers, and everyone involved with the film are to be commended. While staffing our table, yet again we were struck by the number and similar arc of people’s stories: health problems unresolved for years, a chance event that led them to the proper diagnosis of Lyme borreliosis, and successful treatment, usually out of state. Also, yet again we were struck by a disconnect: the CDC’s reporting of six to eighteen Lyme disease cases in Oregon each year and a movie house in Portland, Oregon on a sunny afternoon with over 250 people, most knowing several people diagnosed with Lyme disease. The world hears about the eighteen CDC Lyme disease cases in 2008 and nothing from the hundreds not meeting CDC criteria or process hurdles. We are encouraged by the people we talked to before and after the film that asked to participate in our census. Only by getting an accurate count of who has had L. borreliosis will proper diagnosis, treatment, and research be realized. Whether you have attended Under Our Skin or not, if you know anyone who has or had Lyme disease or unresolved condition possibly related, please help us get them counted. We particularly need to count those who have received treatment and improved. Our census uses a survey that most people can complete online in less than twenty minutes. (Other ways to take the survey are available.) We issue controlled invitations; just send an email message to info@seranogroup.org or click here. Those of you who provided your email addresses at the Under Our Skin showing should receive your invitation soon. Awareness of the size and severity of L. borreliosis is essential to getting the problem fixed. We appreciate your attention and help. 2009-09-28T18:29:35-08:00 http://www.seranogroup.org/index.php/site/entry/best_rebuttal_to_the_klempner_study/ http://www.seranogroup.org/index.php/site/entry/best_rebuttal_to_the_klempner_study/#When:00:26:08Z From an unassailable source… It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine. Dr. Marcia Angell, The New York Review of Books, Volume 56, Number 1. January 15, 2009 Drug Companies & Doctors: A Story of Corruption.  (Dr. Angell resigned as editor-in-chief of The New England Journal of Medicine in June, 2000. The Klempner study of a Lyme disease treatment was published in June, 2001.) Klempner joined the editorial board of The New England Journal of Medicine after Dr. Angell resigned. You can read our evaluation of Klempner’s study here. 2009-09-15T00:26:08-08:00 http://www.seranogroup.org/index.php/site/entry/great_book_on_lyme_borreliosis_published_in_1917/ http://www.seranogroup.org/index.php/site/entry/great_book_on_lyme_borreliosis_published_in_1917/#When:16:38:25Z Want to know about Lyme borreliosis? Learn everything you can about syphilis.Project Gutenberg is a wonderful thing. They take books with expired copyrights, use volunteers to convert them into electronic form, and then hope to have copies spread throughout the world. All for free. Knowledge for knowledge’s sake.    We don’t know why Audrey Longhurst, LN Yaddanapudi and the Online Distributed Proofreading Team pulled John Stokes’ book on syphilis off the shelf of Cornell University and put it into Project Gutenberg, but we are glad they did. Reading Stokes’ book, we were struck by several things:   In 1917, Stokes expected the general public to understand subtle and complex issues.   The level of discourse exceeds most of what is published today for doctors.   The parallels between Lyme borreliosis and syphilis are remarkable. 2009-06-29T16:38:25-08:00 http://www.seranogroup.org/index.php/site/entry/a_note_to_doctors_about_medical_journals/ http://www.seranogroup.org/index.php/site/entry/a_note_to_doctors_about_medical_journals/#When:16:14:27Z Blind acceptance of medical journal articles does not work any more.The first time I talked to a doctor about Lyme disease in 2001, he said, “If it is not in a medical journal, it is not real.” My immediate reaction was an obvious and literal one: there are a lot of things real that are not in medical journals. But I knew what he was saying;  he wanted his information validated and he did not want to deal with noise from unreliable sources. His entry bar was publication in a medical journal, preferably a reputable if not prestigious one. I suspect he tended to think that way before going to medical school and that tendency was reinforced once he got there. Although on that day my reaction was uneasiness with the doctor’s rigidity and close-mindedness, and despite knowing better, for the most part I used his standard for deciding what to believe about borreliosis for several years. If information was not coming from a journal indexed in PubMed or a similar source, for me it was questionable information. I was so biased that when shopping for a book on a medical subject, I generally would not buy it unless the author was an MD. 2009-06-09T16:14:27-08:00