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?
 
@Kitty That is what I feared. It may not help, but I feel like I have to try because it drives me crazy!

They actually already help me a lot, considering they’re not local to me. I am not sure adding more would work if what they’re already doing hasn’t.
 
I just had another thought about how to explain what an RCT is supposed to do.

Imaging that you’re growing new flowers for the first time, and you want to figure out if the special fertiliser is making them grow faster.

If you put fertiliser on all of the flowers, you won’t know if it helped because you have nothing to compare it to. If you put fertiliser on just half of the flowers, you can compare those with to those without and see if it makes any difference.

But it’s important to make sure that everything else is equal.

If you put the flowers with the special fertiliser in the greenhouse or if you water them differently - how would you know what is actually making a difference? The ones without fertiliser (the control group) have to get exactly the same treatment except for not getting the special fertiliser.

Anecdotes are like putting a random item into one flowerpot, and then using that pot alone to claim that the random item made the flower grow faster. There is simply no way to tell if it did anything. For all you know, it might have made the flower grow slower than it otherwise would.

(If someone says that you usually know how quickly a flower grows so you can compare to that, then you can explain that that leaves more room for uncertainty and randomness, but it can be used if you’re certain that you know how those flowers grow in your garden. But if tou ask any farmer or gardener, they’ll tell you that things vary from year to year. And we rarely have that info for diseases because humans are a lot more complicated than flowers.)
 
Maybe tell the rituximab story? How some people improved, doctors got interested, they started a trial, we heard about remissions, some pwME sought it out and managed to get a doctor to prescribe it, yada yada...and then the trial showed it did not work better than an infusion of saline. So the people who improved didn't improve because of the drug. They improved (or looked like they had improved) for other reasons, like spontaneous improvement etc.

The other approach is to say something like "You've been so supportive since I got sick. It has been so nice to have you on my side. There's one thing that I find a bit difficult. Everyone tells me about something they heard helps ME/CFS that they think I should try. And every person has a different story or a different list of supplements or a different programme that they think will be the answer. It's so nice that they want me to be better, but I actually find it really unhelpful. It makes me feel panicked/isolated/[insert feeling here]. I like to work out my treatment with my doctor. And then with friends and relatives, I just want to enjoy the bit of time I can spend with you. When I keep them separate like that, I find I cope much better. So I'd prefer if we didn't talk about treatments." Or whatever makes sense for you.

The idea with the latter is to present them with the consequence for you - e.g. that it actually makes you feel crap -, hope that they see that as undesirable, and set a boundary. Then you have to stick to it, so if they bring up a treatment again, you reiterate "I don't want to talk about treatments. It makes me feel crap. Tell me, how did X get on in Y?..."

There are probably much more skilful ways of conveying the same message.

If the stream of recommendations is unstoppable despite asking for it to stop, another boundary you could set is that you've so little energy for conversation and you want to use that to talk about X and Y and Z. Ask that they send you an email if they want to tell you about a treatment people swear by. It is much easier to cope with an email, and most people don't make the effort. You can just send a one-line reply to each email, like "Thanks for thinking of me." They'll eventually dwindle.
 
Evergreen said:
Maybe tell the rituximab story? How some people improved, doctors got interested, they started a trial, we heard about remissions, some pwME sought it out and managed to get a doctor to prescribe it, yada yada...and then the trial showed it did not work better than an infusion of saline. So the people who improved didn't improve because of the drug. They improved (or looked like they had improved) for other reasons, like spontaneous improvement etc.
Click to expand...
Yes I like that. I would also emphasize that ME/CFS is not special in any sense and should not be thought of as different (besides some effects that are probably not worth describing in these situations). People think all sorts of things work when they end up not working. Remember when people thought bloodletting was the panacea for everything? The people thought so for no other reasons that other people now think x,y,z.
 
Evergreen said:
Maybe tell the rituximab story? How some people improved, doctors got interested, they started a trial, we heard about remissions, some pwME sought it out and managed to get a doctor to prescribe it, yada yada...and then the trial showed it did not work better than an infusion of saline.
Click to expand...
That’s true, the rituximab study is good example, albeit a weird one! It still baffles me.
 
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