Like many people writing blogs these days, I use Google as my primary research tool. Recently, I’ve been reading a lot about claims of efficacy for treatments for retinitis pigmentosa (RP), the currently incurable disease that led to my own blindness. When I’ve googled, “retinitis pigmentosa acupuncture cure” this morning, I got, “about 7.4 million results” and, skimming through the top ten, the only skeptical content was found in discussions between potential consumers with RP and their families on various user forums. All of the “official” looking stories were selling what sounded to me like expensive treatment plans that will, given the failure of acupuncture in scientific studies to demonstrate efficacy, do no good for the patient.
Other treatment modalities I’ve been researching include “stem cell” treatments(1) and gene therapy as well as homeopathy for RP(2). Google results for homeopathy show an alarmingly large number of results but most seem to point to other, equally ineffective alt-med regimens for RP itself. Looking at the stem cell/gene therapy results, though, is much more interesting. [While this story was in progress, Steven Novella wrote a terrific article on entirely ineffective but very expensive “stem cell” therapies to correct blindness called “Selling Stem Cell Hype.”.]
Although googling for RP and stem cell therapy produces fewer total results, it is the only search that produced a lot of legitimate science. One who reads the Google results who doesn’t have a know how to tell real science from a fraudulent claim, though, may be more confused as the real science is demonstrating some pretty profound results and, right next to them, are businesses selling what they claim to be “stem cell” treatments for RP which have not, as far as I can tell, have been researched properly or approved in the US, UK or EU. In Novella’s article, of seven patients who received what was claimed to be a “cure” from one of these dubious stem cell clinics in China, in fact showed no improvement and five of the people studied actually contracted meningitis from the treatments.
In my first article for 21st Floor, I wrote about a couple I renamed Sid and Nancy. I recounted how Nancy had written to me asking for ways to dissuade her husband from spending thousands of dollars on a series of thirty acupuncture sessions over ten days to cure his RP. Like me, when Nancy googled looking for anything real regarding acupuncture and RP, she found nothing other than clinics selling their questionable services.
A week or so ago, another person, this time a grandfather, found me online and wrote to ask me about stem cell cures for RP. He explained that his grandson had spent more than $100,000 to travel to China and have a series of “stem cell” treatments performed to restore his sight. The good news is that these treatments did not damage any of the grandson’s remaining vision; the bad news is that nothing positive happened either. Now, the US front company for the Chinese stem cell treatment center has contacted the family again and are willing, for only $50,000, to give the patient more treatments that will work this time. Apparently, this second set of treatments is tearing their family apart. No one wants to say that the grandson shouldn’t try to save his remaining vision but no one wants to spend another $50,000 on another set of useless procedures plus pay for a trip for two to China.
So, what can we, as skeptics, do to improve this situation?
I asked Tim Farley of What’s the Harm .Net and, apropos to this discussion, Skeptools, what we as skeptical activists might be able to do to help families, patients and others who may be seeking information about disabilities, terminal illnesses and possibilities of alt-med where mainstream medicine can provide no satisfying answers. I knew a bit about search engine optimization from articles here and there but knew nothing about the mechanics of getting a page higher in a Google search than anything else. Tim sent me a pointer to a number of articles he had written for Skeptools on search engine optimization (SEO) and I started to read.
From reading Skeptools, I learned that we skeptical activist need to learn how to drop Google bombs. We need sorties for our stories, bombing missions of critical thought and with the compassion that may help families save large sums of money and, even more importantly, help people struggling with a disability or terminal illness avoid getting caught up in false hope that will lead to true despair. I’ve no evidence that chasing alt-med remedies for incurable diseases actually leads to despair in all or even most who go through such an experience but it is how it happened for me and for a number of people with whom I correspond and I suspect that it effects a lot of people this way., ,
Reading the Skeptools site taught me that we seem to need a whole lot of web masters to cooperate by placing links to skeptical articles about alt-med to increase their ranking in Google. We also seem to need to tweak text we use on the links so as to make it fit into the Google algorithm for ranking.
Tim sent me an email with some additional information on how to optimize a site for ranking in Google and other search engines. One important aspect of this effort will be, in addition to getting lot of links to our sites, to increase “link strength” of these links. As we develop a search engine strategy, we will write more about specific ideas on these matters. If you are interested in this technology, you can read a PDF that Google published on search engine optimization.
It is essential that we not get into a competition among skeptical blogs and publications and google bomb pages in a way that we’ll dilute our effort and end up with a homeopathic bombing campaign. I would love it if we could get one really good page that gives an overview of why some sort of modality is not efficacious with pointers to much more. We could then all point to said article and hopefully get it high in the Google rankings when someone searches on it.
How then can we maximize our efforts and provide valuable information to prospective patients and their families with a consistent skeptical message? It is essential that we have broad articles on topics like “acupuncture” and “homeopathy” but we will also want to have skeptical articles in the Google top ten results if someone, as I do above, searches on “retinitis pigmentosa cure acupuncture” or something like “diabetes cure homeopathy.”
As skeptics, we need to launch a bombing campaign that gets and keeps our content as high as we can so the people who need this information can get it easily. We need to figure out some way to coordinate this effort and maximize the impact of our efforts. If you have ideas on this, please leave comments. I’d be happy to work on this effort but we will need someone who knows what she is doing to tell me what to do.
(1) A Google search on, “retinitis pigmentosa cure stem cell” found 567,000 results.
(2) A Google search on “retinitis pigmentosa cure homeopathy” found 1,660,000 results.