Remember that bleach that’s still on sale as a cancer cure?
The saga continues.
Specifically, it continues with the case of Rhys Morgan, who was diagnosed with Crohn’s disease a few months ago. I know nothing about Crohn’s disease except what I just read about it on Wikipedia, but suffice it to say that it’s a chronic condition with no known cure, and it sounds pretty nasty.
So not long after his diagnosis, Rhys joined an online support group, signing up to a forum where people would swap stories and sympathies of their experiences of living with this disease.
Obviously one of the things that comes up in discussion on a site like that every once in a while is the possibility of a new effective treatment, or possibly even a cure, being discovered. There may well be a number of promising new drugs and therapies being tested out there, some of which might yield potentially exciting results, and for people suffering from this disease, it’s not a vain hope.
But even without any medical qualifications or detailed awareness of the current state of the medical literature, I know one thing: bleach is no miracle cure.
Unfortunately, not everyone sees it that way.
I don’t want to be too harsh on any of the people in this story. I’ve never had a major chronic condition to deal with, or had anything so destructive become such a major focus of my life. I can’t judge how much harder basic aspects of life might become under such conditions, or how hard it might be not to seek reassurance and comfort and hope wherever you can.
And I can understand how people with a disease like Crohn’s might want to be able to talk about it openly, in a place where they can be sure of not being judged or criticised harshly for their decisions or their misfortune. A support group should be all about supporting people, and you want to trust that you won’t be attacked just for having a differing viewpoint.
But some of the people on this message board go way beyond any benefit of the doubt they might earn through sympathy. And even a group that focuses on supporting people should give everyone the chance to criticise ideas.
You should read Rhys’s full write-up of his experiences there. In short, his attempts to discuss the ways that quacks might be trying to take advantage of vulnerable people like themselves got repeatedly shut down, and he was told that his critical questioning was inappropriate and unwanted. He watched discussions in which people gave out dangerous and unqualified medical advice – and other people followed it to the point of drinking bleach, making themselves seriously ill as they hoped for a cure – and his efforts to inject some sense and safety into things were decried as disrespectful of other people’s choices.
It all dissolved into anti-scientific alt-med insanity with depressing inevitability. Apparently expecting evidence to back up medicinal claims is “antagonistic”. I think anyone who’s trying to get people to drink bleach deserves some antagonism.
I know they’re not my place, and I don’t want to step on any toes of people who spend a lot of time there, but I’d have thought that a discussion forum for sufferers of a disease is among the places where it’d be most vital to have a serious critical debate on what works and what doesn’t. These are the people most likely to be hurt by snake-oil salesmen – and where there’s illness, there will be snake-oil – and sufferers would benefit more than anyone from knowing who and what to trust, and what red flags to watch out for that might warn you when you’re being taken for a ride.
He’s 15 years old, too. Precocious little shit.
Edit: And he’s still more mature than me.