If you keep an eye on the UK skeptic media you will have probably already heard the story of 15 year old Rhys Morgan and Miracle Mineral Solution (“Bleachgate”). If not, let me share it with you.
Crohn’s disease is horrible. Being a teenager is horrible. Have a read through The National Association for Colitis and Crohn’s Disease pages for 16-29 year olds to get an idea of what it’s like when both happen at once. Welsh teenager Rhys Morgan was diagnosed with Crohn’s a few months ago. He did what a lot of people with similar conditions do and joined some online support groups.
It’s probably worth repeating that Crohn’s is horrible. I should also stress that it’s a complex and unpredictable condition, the details of which medical science is still unraveling. Such support groups are not only an emotional support, but can be great for sharing information, knowledge and experience. They can also be ways of spreading things that aren’t so helpful, and they can emotionally difficult places too (I can recommend this book for some discussion of issues surrounding this).
Rhys was sceptical of one of the treatment being pushed on a forum, something called “Miracle Mineral Solution”. Very sensibly he did a bit of digging, and sound found that the FDA describes it as industrial bleach. Rhys shared his concerns with the forum, and a whole story of internet community nastiness followed. Watch Rhys’ videoblog for the full story, as he tells it himself so well (or see transcript on his blog).
When the story first broke about a month ago, it was covered extensively by skeptics bloggers, but no where else much. This week, there was an overview of the story in the Guardian, via a column by skeptic-blogger Martin Robbins. It’s great that Martin’s connection there gets the story into such a high profile site (and, as Paul Bradshaw says, it’d be good if lots of people link to Robbins’ piece with the words Miracle Mineral Solution…). Still, I’d have loved to see it covered by, for example, reporters on education or health beats too. Not just for the extension of coverage, but because I think it’s worth reflecting on the story from more than just a skeptic perspective.
There has been a move in recent years to make UK science education more about public engagement, designing curricula that not only train the next generation of scientists, but equip young people to use and critique claims to scientific authority as part of their everyday lives (see this GCSE for example). However, a lot of this sort of work seems to see the process as preparation for later life, as if active engagement is something adults too whereas kids are simply passive. Similarly, I’ve heard activists in young peoples’ health complain that under 18s are too often seen as “human becomings” rather than “human beings” when it comes to medicine; that teens are simply taught how to prepare for a healthy adult lives as if they have little role in their current existence.
I can see why people have been celebrating and supporting Rhys on this issue, but he’s not the only teenager to take such a sensible and active role when it comes to their health (e.g. the trustee of Body and Soul featured in this podcast). I suspect a lot of young people hope to get the best possible information about health; that they will spend time looking for such information and will be sceptical about what they find. Also that the care that others get good information too, and so share it about, and that they will get into fights with other young people and adults while they do so.
That’s why, for me the tale of Rhys Morgan and Miracle Mineral Solution isn’t just a story for or about skeptics. It’s a genuinely interesting, concerning and illuminating story of inter-generational health communication in a digital age, and one I’d have love to see talked about more.
EDIT: 19/9/10 changed reference to Martin’s piece in Guardian which was initially down as a blogpost rather than a column. See my comment on Paul’s blogpost for context. Also, look – the story has been picked up by a Kenyan newspaper and on the PLoS blogs.
through the looking glass 