Yves here. Wikipedia has become widely accepted as a highly credible source (I use it and even contributed in their recent funding appeal). It’s therefore important to know its limits and how they arise. Unfortunately, it appears, like most information sources, that it is subject to pressure, in this case, as Bob Goodwin contends, the medical-industrial complex.
I am sympathetic to Goodwin’s thesis because I can see a similar bias against minority medical perspectives supported by experimental evidence in the Wikipedia presentation on autoimmune diseases. The normal treatment program for many so-called autoimmune diseases (rheumatoid arthritis, the most common, is the one generally used for research purposes, but others like scleroderma hew to the same pattern) is that of symptom suppression, as in disease management rather than cure. The problem is that the drugs cease being effective after a period of time. The doctors then move to a different type of drug, with the successors having less efficacy and more side effects.
There is an another protocol, developed by a board certified rheumatologist who was also a board member of the national organization, Thomas Brown. He was frustrated by the long term poor results and looked into past research paths that had been abandoned. He was stunned to discover that “autoimmune” was a made-up theory with no clinical support to justify the performance of drugs launched after WWII that dampened symptoms. Research before the war had instead been on the track of finding infectious agents. Brown identified one, mycoplasma, that he believed to be the culprit. He was able to get a limited number of studies funded and got promising results as well as having success with patients in his office. The difficulty in proving his thesis to a “clinical trial” standard was that his protocol uses an old off patent drug (tetracycline) and there’s no money for that, and his protocol takes time (the first six months, patients typically don’t show net progress because they get a Herxheimer’s reaction, which is pathogen die-off). So it takes beyond that period for patients to show real progress. Most report being entirely or largely symptom-free after two years. But that is a hugely costly length for a former trial.
You also cannot get tested for mycoplasma in a normal lab (only a narrow range of pulmonary mycoplasma that are an opportunistic infection in HIV positive patients). When my father suffered from a so-called autoimmune disease, dermatomyositis, which he was told is fatal in 5/6 of the cases within a year, he got several years of relief from anti-malarials. When his symptoms got worse, I found out about the Brown protocol. But my father’s rheumatologist debunked it. So my father decided to get his blood tested to see if it had mycoplasma. An out of state doctor friend found a lab in Florida that could test for it. But it is astonishingly difficult to get your own blood transported across state lines (my father was too debilitated to travel at this point). It took six months to navigate the regulatory/mechanical issues. When the results came back, the doctor friend called my father and said, “Your blood is swimming in it [the mycoplasma]”. But he was too sick to fight his doctors (he was also getting horrible side effects from the drugs he was on, including lesions in his mouth, which meant he could not eat, and the prednisone and other meds were making it impossible for him to sleep) and go to a new one (I had found a board certified rheumatologist in the area who would administer the Brown protocol). He shot himself a few days later.
You will see no mention in the Wikipedia entry on autoimmune disease of the studies supporting the Brown treatment or of the possible role of mycoplasma.
Similarly, I have a very successful colleague (as in he has the means and connections to get the very best treatment) who became sick in the early 1990s: joint pain, severe fatigue, difficulty in concentrating. After ruling out what they considered to be obvious culprits, the various doctors he saw insisted his problem was psychological. He finally found one who thought his ailment might be Lyme disease (this was when it was barely recognized) and at that point, it was advanced Lyme disease. He had to administer himself IV antibiotics at home daily for months (he had a stent in his arm, which was painful) but it eventually cleared up his problem completely. Since my friend is extremely conservative in the sort of doctors he chooses (as in only very highly credentialed, affiliated with major teaching hospitals) I am very surprised to learn that the idea that there is “advanced Lyme disease” is deemed a fringe diagnosis by Wikipedia and thus unfit for inclusion.
By Bob Goodwin, an investor and medical device entrepreneur who lives in Mercer Island, Washington
I have a personal interest in studying Lyme disease and found the information on Wikipedia about Lyme disease unfairly represented a significant minority view across a wide range of articles. I tried to help repair this and ran into obstacles. My personal obstacles were inexperience, anger, and difficulty with finding neutrality, but quickly improved. The far more interesting obstacle was an aggressive culture within the editing community that I will try to demonstrate has been captured in the medical areas, and that this is not inconsistent with what Wikipedia wants and needs. I hope reader comments will dissuade me so that I can submit a retraction.
I will explain my motivations for the article, outline the Wikipedia culture, talk about my experience, give independent references, and then tie together the case.
Here is a link to an article I am still working on about the Lyme wars. It has 40 sections, and 100 references and links. I don’t think it will ever go onto Wikipedia, as you will understand later. (Note: Nothing at Wikipedia is deleted, and anyone can edit everything, and can comment on anything, including that article-in-process.)
This is from the Summary:
The “Lyme Wars” is an ongoing dispute since at least 1993 between mainstream medicine (especially Infectious Diseases Society of America and Centers for Disease Control and Prevention) and a minority set of doctors, scientists and patient activists (especially ILADS).
The two main points of disagreement are
- The mainstream view that Lyme disease is over-diagnosed, and is easily cured with short term antibiotics, and that persistent infection (chronic Lyme disease) does not exist.
- The minority view that the actions of Infectious Diseases Society of America were quasi-regulatory as they controlled research, insurance coverage and participated in enforcement of their Lyme guidelines as mandatory.
The short reason it will never be published is because Wikipedia avoids the promotion of “fringe” points of view. They do not want to see an article on Earth start with the sentence “There are two theories on the earth. The flat earth theory has a long history and is still passionately held by…” The “WP:Due Weight” rule tells us to discuss fringe ideas with extraordinary prejudice.
The Lyme Wars are open warfare between doctors, insurance companies, patient activists, researchers, universities, publications and medical societies. The war has hurt patients. I think both sides deserve blame and I like the Wikipedia experience and discipline of neutrality. In my research I did not find one single research paper, review, book, newspaper article or magazine story that was neutral. Every reliable source I read took one side or the other. This story will be prevented from going into Wikipedia because one side of the war is a fringe group, and they do not want articles titled “The flat earth war.”
The intellectual problem for Wikipedia, however, is that the Lyme wars are not about a fringe group, but a minority view of bona fine professionals with evidence supporting their view.
This story has some implications I had not originally seen. It became obvious that the Lyme wars are simply a proxy war. We know big changes are coming to our health system. The Lyme wars teach us to expect the prosecution of doctors, lawsuits against medical societies, capture of research and medical societies from doctors, narrowing and standardization of care, dismantling the doctor-patient relationship and clinical diagnosis, and the intrusion of the internet into the dynamics of healthcare.
In Sincere Defense of Wikipedia
Despite this charge, I believe history will judge Wikipedia very kindly. It was an experiment almost 10 years old that had a big impact at a still very early stage in the development of mass information. It was a bold and visionary idea that to a large extent worked.
On a personal level, every person I worked with on Wikipedia was a volunteer. Most were willing to discuss points in depth. All were tuned to the rules and culture. All were smart and passionate.
The hidden truth, however, is that the most interesting articles in Wikipedia are battlefields. A large percentage of the effort of more experienced editors is to go around and delete new crap. Despite the claim that articles are not “owned”, this thin collection of gatekeepers has by necessity created counties for themselves as sheriffs. The anonymous Internet is obnoxious, and the sheriffs are acculturated to bad intent. Wikipedia knows this, of course, and wants more editors with good intent, and so they give newcomers like me lots of ways to avoid getting discouraged by sheriffs.
Who would ever want to be a Wikipedia sheriff? I guess I would, if I put a month or two into my article and got it published. I would watch every attempt to remove, deflect of distort carefully constructed narrative. My county would probably grow in the thin world of editors, because articles rarely stand alone.
Wikipedia is in a bind. They need more editors. Casual editors are scared off by sheriffs and those with ill intent. So they must rely on people with passion, which rarely comes from neutrality. The solution Wikipedia has fallen to is to entice “experts”, and to maintain a strong commitment to “mainstream views”, which is ultimately defined by the sheriffs and those they debate with.
Try a simple web search (please use Bing, the results on average are as good as Google, but they don’t use your personal information to the same degree) of any subject. The top results are a pretty good approximation of which web sites are being used the most. Wikipedia is at the top of those lists for many non-commercial subjects. Wikipedia is nowhere near the top in most commercial subjects. Except medicine. Later I will provide more evidence of this connection.
My Experiences on Wikipedia as an Editor
I will not rehash my newbie mistakes, which could be rationally used against me in a court of law to undermine my credibility when I make any criticisms of Wikipedia. But they are, as they say, “public record” in Wikipedia. But I learned pretty quickly.
I tried to edit some errors on the “Lyme Disease” article. The main antagonist in the war is called ILADS, and the article about them was two pages long (and still is) and could be a description of the flat earth society. So I decided to rewrite that. Every edit was “undone” within an hour, with a cryptic message. I undid the undo and wrote a long inquiry in half a dozen places. I got back a message simple and clearly stating that “we do not give undo influence to fringe views. Especially in medicine. See WP:MEDRS”.
I decided to appeal, and looked at all of the editing history, and all of the complaints and anger, and reached out to some rational voices. My opponent also selected allies, I think. We then debated on a ‘talk’ page for days. My argument was that Wikipedia has a third category called “Significant Minority Opinion.” All I needed to do was find a “notable adherent.” Pages of debate ensued until I discovered the Catch-22. To be notable, you must have a mainstream opinion. In Wikipedia medical pages there may not be a single minority opinion stated. In some cases the mainstream opinion is to have a debate, and that debate is exposed. The sheriffs are very committed to good summaries of the opinions of the designated leaders of each field. The CDC Lyme webpage disagrees with ILADS, so ILADS is fringe.
I politely folded, and continued a long conversation with one of the good sheriffs on my personal page. I also continued the fascinating research.
Independent References on Wikipedia/Healthcare
Rising out-of pocket costs (here and here) will discourage medical treatment (here and here and here). Insurance companies need to rein in costs, which they accomplish by creating barriers (here) to treatment of chronic diseases which are the most expensive (here).
Medical research predicts more people will use the internet for medicine, (here, here, here, here, here) and there is a call to control the internet agenda (here, here, here). Some are arguing that public health care information can be unethical (here) or internet advocacy undermines public health (here and here). Internet inaccuracy is measured by adherence to established guidelines (here and here). Self-diagnosis happens when people can’t afford to go to a doctor, so internet medicine is bad (here, here). And my favorite, people don’t always believe mainstream medicine (here).
Mainstream medicine recognizes Wikipedia as the key tool for patient information (here). There is a call for people in mainstream medicine to become author Wikipedia (here, here, here) and for Wikipedia use to be expected by medical students and doctors so needs to be accurate (here and here). Wikipedia is also focusing a lot of recruiting in medicine (here). Here is a critical review of Wikipedia not having all drug insert data (here) and an instructive response (here).
Medicine has decided it needs to capture the internet message, and that medical searches are going to Wikipedia. For Wikipedia to remain vital, it needs authors, and is getting them from main stream medicine. Wikipedia rules and culture are unintentionally supportive of capture.
The Lyme Wars were a good dry run for how to transform medicine, and mainstream medicine lost the information battle the first time. In the words of Professor Durland Fish of Yale University, “This battle cannot be won on a scientific front. We need to mount a socio-political offensive; but we are out-numbered and out-gunned. We need reinforcements.” (here) In the real war, the same mistake will not be made again.