Why the Internet is awesome: Rhys Morgan and the Burzynski Clinic
Sometimes I hate the internet. Some days, it’s just a space filled with nonsense and bilge.
And then there are days like today, where you do a quick morning round up, and end up learning something new and being inspired. That happened to me this morning, when I found a courageous young man standing up for sound science. It is a worthy story, and I thought I’d share the path.
On the morning blog routine is Bad Astronomer, where I read the post “‘Alternative’ cancer clinic threatens to sue high school blogger.” The story is about a 17-year old British high-school student named Rhys Morgan. Morgan suffers from Crohn’ Disease, and keeps a blog about his life, health, and treatment, among other things. One of those things is the Burzynski Clinic, a cancer treatment center in Texas that apparently offers very expensive cancer treatments that are not based on sound medical research. I’d never heard of it.
So Morgan posted about this place. He wrote a post in August titled The Burzynski Clinic, and cataloged the criticisms of the treatment, called antineoplaston treatment. Among them are: it has been in clinical trials for 30+ years, has no FDA approved treatments, and has been called “scientific nonsense” by the Allegheny Cancer Center in Pennsylvania. Morgan also points out the tragedy of taking money from desperate people in need of hope, even as he understands that attacking the Clinic could take away more hope. It’s an excellent piece, handling sensitive but critically important issues, written by a young man who can speak to the difficulty of illness.
Needless to say, this was not taken to kindly by the Burzynski Clinic. As Rhys Morgan chronicles in his latest post, Threats from the Burzynski Clinic. Read that one. It’s long, but worth it. In it, Morgan copies the exchanges between himself and a representative of the clinic, who is threatening to sue Morgan for libel. The exchange is remarkable if for no other reason than the tactics. It begins with a cease-and-desist and ends with the clinic’s threats attached to a photo of Morgan’s home from Google Maps.The ‘lawyer’ acts as though he is God, and that any opposition, especially from a high-school student, deserves to be ridiculed, bullied, and belittled.
But still, this is a threat of legal action, from a successful, if scientifically sketchy, cancer clinic. I was actually inspired (something that doesn’t happen often on the internet) by reading the back and forth. Morgan holds his ground, acts responsibly, and stands up for science and the law. Kudos to this young man, and shame on the Burzynski Clinic for their bullying, brutish behavior.
As a final note to the greatness of the inter-webs, I googled this story to see what else there was to read about Rhys Morgan. I found this story by BoingBoing, where they discuss other threatening claims from the clinic.
The BoingBoing article ends with a warning to the Clinic about an online feedback loop in which any attempt to remove content from the internet only generates publicity, and leads to the explosive reproduction, sharing and the spread of that content. Today, TRC and all the others picking up this story are proof that it works.
The effect is named after Barbara Streisand, who attempted to have a photo of her home removed from the internet. To show the true impact of this loop, there is a wikipedia page titled: the Streisand Effect. It features prominently the photo of Barbara Streisand’s home.
*NOTE: I’m not particularly interested in people’s opinions on alternative medicine. Like anti-vax and other scientific ‘controversies’, it’s an argument that cannot move in any direction, and thus is not particularly enlightening. Please save your anecdotes for another blog.