Resource on why anecdotes aren’t reliable?

Verity

Verity

Senior Member (Voting Rights)
I hope this is the right forum. I wasn’t sure where to post this.

Does anyone have a good resource saved explaining why anecdotes are not reliable sources of information about medical treatments? I have a relative who will not stop bugging me about ME “treatments” that she’s convinced are effective because lots of people say they are. They’re always of the brain training/lifestyle changes variety. I don’t think it’s going to stop unless she understands why I’m unconvinced, and I get PEM from cognitive tasks easily so I can’t fully explain it to her myself. She has zero knowledge in this area, so the explanation would have to be from the ground up and accessible to a layperson. I found one good article, but it used too much technical language.

Any kind of resource would work, from an blog post to a post that already exists in this forum to a simple explanation that has worked for you in the past. Thought others might have had this problem before and saved something helpful!
 
I hope you find something. I’ve never had much luck explaining it to people that aren’t aware of it yet, but here’s another effort:

Perhaps comparing it to how superstitions come to be might be a way forward. People do something special and then they win a small sum in the lottery the next day. A superstitious person would do the special thing every time they play the lottery to create more luck, even though it’s obvious that we can’t influence the lottery numbers.

In the same way, people sometimes get better for no reason, just like the lottery. And sometimes, that happens at the same time that they tried something. That doesn’t mean that the something caused them to get better. It might have just happened at the same time.

We’ll always find coincidences like this. And if you want to say you have a treatment for something, you have to show that is wasn’t a coincidence. The people pushing treatments for ME/CFS have not done that yet.
 
Often information doesn't make much difference, to be honest. The real problem is that it's hard for people to believe they can't help; that they can't do anything to change the outcome for someone.

Nearly everyone who develops ME/CFS goes through a phase of believing there must be something, and it takes time to understand—and accept—that there isn't. It's the same for relatives and friends, except that they're a step removed. They're not the ones whose bodies obstinately refuse to get better, so they don't understand that their efforts aren't helping and might even be making things worse. Most of us wouldn't have understood either, if we'd been the person trying to help instead of the one who was ill. It takes time.

The best suggestion I can think of is to tell them ways that they could help. Maybe ask them to do small things for you, or mention helpful things that others do?
 
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