Saturday, 17 October 2015

It Makes No Sense

Image, Purple flowers. Text: Lupus: it's a little different for everyone who has it.Sometimes, things that happen make no logical sense.

I read yesterday about an issue medical researchers are having with placebos.  Apparently, the placebo effect is becoming stronger, making it harder to test new drugs properly.

A placebo is an important part of testing any new medication.  People in medical trials are either given the actual drug or a placebo (fake - that shouldn't do anything).  If more people get better using the actual drug than using the placebo, it indicates the drug's doing something worthwhile.

There's always been an issue with the placebo working for some patients, even though it really shouldn't.  Now, at least over in America, the placebo is working for more and more patients, affecting the results of medical trials.

It has me wondering about other things I know work for some people, but probably shouldn't.

For example, there's no reason the Paleo Diet should make people healthier.  It's been criticised by nutritionists and scientists.  But I know someone who has lots heaps of weight using it, and her lupus is far better controlled than it was before she started using the diet.  She feels good. (And this particular lovely lupie had been extremely sick.)  For her, it clearly worked, whether there was any reason it should have or not. That doesn't necessarily mean it will work for everyone else, or even anyone else.  But it works for her, and for her that's fantastic.

Again, I frequently hear from someone who tells me how great low dose naltrexone is.  For that person it apparently worked.  It's not an approved treatment, and there doesn't seem to be any actual clinical studies to back it up.  But there's anecdotal evidence that for some people, it apparently works.

The one I most struggle to believe is the woman I heard of who "cured" lupus by giving up coffee.  I would never, ever try that.  It's a sacrifice I just am not willing to make.

So where does that leave us?

We all constantly hear about alternative treatments, diets, "cures", whatever else.  A lot of it is snake oil.  And much of it none of us would ever want to try.  But if you hear of one that does make sense to you, talk about it with your doctor.  (Remember, sometimes alternative treatments can have bad interactions with the medications you're already taking.)

If it's not got any way of making things worse,  maybe some of it is worth a try.  Who knows? You might be one of those people that something works for, even if there's no known reason why it should.

We're all different.  The medications that work for some lupies don't seem to work for others.

Maybe if the placebo effect keeps getting stronger, none of us will need actual drugs one day.  I suspect that day is a very, very, long way off.

Until then, I'll just stick to what my doctors have told me to do and to take, and not ask about trying anything else.  This is more than enough for me to handle.



Reference: Science Alert, The 'placebo effect' is getting stronger with time. http://www.sciencealert.com/the-placebo-effect-is-somehow-getting-even-better-at-fooling-patients-study-finds

Science-based Medicine: Low Dose Naltrexone: Bogus or Cutting Edge Science? https://www.sciencebasedmedicine.org/low-dose-naltrexone-bogus-or-cutting-edge-science/

ABC Science, Paleolithic diet doesn't weigh up. http://www.abc.net.au/science/articles/2013/09/10/3842158.htm

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