From InterAction 75, Christmas 2017
How can people with M.E. navigate the scary waters of internet cures, without falling for dangerous pseudoscience? Here are some excellent tips from science journalist and blogger, Julie Rehmeyer.
Five years ago, against practically anyone’s better judgment, I knowingly abandoned any semblance of medical evidence to follow the bizarre-sounding health advice of strangers on the internet. The treatment was extreme, expensive, and potentially dangerous.
But I was desperately, desperately ill. My chronic fatigue syndrome had gotten so bad that I often couldn’t turn over in bed. Top specialists had run out of treatments for me, and research on my illness was at a near-standstill. So I took a deep dive into the murky world of untested treatments. The incredible thing is, I found something that brought astonishing improvements, even if not quite a cure. I describe the entire journey in my new memoir, Through the shadowlands.
What helped me is no cure-all. But my experience taught me lessons about how to navigate the online world of data-less anecdotes, a place I still recognise as being full of potential scams, pitfalls, and harm. But it’s also a community that gave me my life back, and if it helped me, it could help other people – provided they take the proper precautions.
The five key principles
1. Above all: listen, but nurture your inner sceptic. Demanding scientific proof in a realm science has abandoned will go nowhere, so a kind of radical open-mindedness is essential. But because compelling personal stories can be dangerously seductive, especially when pain and emotion are part of the mix, scepticism is equally crucial.
2. Keep a beady eye out for possible downsides. Is a treatment invasive? Expensive? Potentially dangerous? Will following one course of treatment preclude others? The risks are not always obvious: dietary supplements, for example, aren’t necessarily benign just because they’re “natural.” The great injustice of following untested treatments is that their side effects are also untested. The calculus here varies greatly from person to person, and from problem to problem: someone facing debility or death who has no well-studied treatments left to try may find far greater risks to be acceptable than someone facing a short-term condition.
3. Evaluate your sources. In the case of recommendations from patients, that means evaluating the patients themselves – which typically requires getting to know them pretty deeply. Overall, how thoughtful and trustworthy do the patients seem? How similar is their situation to yours? Obviously, the more similar it is, the more likely their proposed treatment will help you. How much have they really benefited from the treatment? Do they have objective evidence to back this up?
4. Constantly look for contrary evidence and alternative explanations. Or, to put it another way, stay humble. The more you invest in a solution, both physically
and emotionally, the more likely you are to want it to work. That desire makes it easy to come up with ever-more elaborate theories to explain away contrary evidence. This is the best way to deeply delude yourself. If you’re not naturally sceptical, make yourself explain your ideas to a close friend and have them give you an honest reaction. Since you’ve invested time and energy and are motivated to think it works, checking in with someone neutral might help.
5. Don’t imagine you know more than you do. In particular, you don’t have to get too hung up on mechanisms. Without research, it’s often anyone’s guess just how a particular treatment works. But the only thing that matters is whether the treatment works. Even if it turns out that it’s ‘just’ a placebo, who cares? Placebos can work – that’s the whole reason they matter. (Again, it’s up to each person to assess how much a costly placebo is worth it.) Of course, the fact that patient communities sometimes find answers that scientists and doctors have missed doesn’t mean that all of modern medicine is misguided. In fact, it seems inevitable to me that patients will sometimes discover answers science hasn’t yet explored.
This article is an abridged version of a blog post Julie wrote for Slate.com.