Tuesday, March 25, 2008

The Placebo Effect

As defined on thinkquest.org, the Placebo Effect is:

Placebo Effect
Healing effects which are based on the person's own self-healing capacity, but which is triggered by the belief that they are receiving an active medication.
Now, I realize that the clinical trial I am in, CFTY720D2302 aka TRANSFORMS, has no placebo, so there can be no true "placebo effect" for me, but the idea that this phenomenon has been documented and has a name fascinates me.

"Healing effects which are based on the person's own self-healing capacity..." Does the very definition concede that we have the capacity to think ourselves well just with the power of the brain?

It brings to mind cartoons of the coyote and the road runner...where the coyote runs off the cliff while chasing him. He treads air for a while, staying up there. It's only when he looks down and realizes that there's nothing beneath him but a thousand feet of air that he actually starts to fall.

Is that what a placebo effect is like? Do people in trials that have a placebo want so badly to be getting the real thing that they are treading air and doing great simply because they think they are?

What if I pulled apart one of my supposedly Fingolimod capsules and found out there was nothing inside, and then had my shot substance tested only to discover it was sterile water? What if I wasn't getting any real medication at all, but this experiment was all about the Placebo Effect?

A big, elaborate test where you have to convince the patient to be a willing participant who knows they have to be getting some kind of real substance, but in actuality it's all fake and they are recording how well you self-heal based on the idea that if you are made to believe you are healing or in remission, then you will heal or go into remission regardless of the substances you ingest or inject.

I have always been a very impressionable person. I remember once I had to have an injection of dye for a CT I was having. I knew that it could make me feel warm all over and had some other noticeable effects. I had my eyes squeezed very tightly shut so I couldn't see her poking the vein in the crook of my arm. But seconds later I said "I smell something funny...I have a weird taste in my mouth!" and I started to panic.

She said "That's odd because I wasn't able to get into your vein good enough in that arm and I'm going to have to try the other arm...you haven't gotten any of the dye yet."

That's just how it's always been with me. I can imagine very real, very scary side effects of imaginary things. So, what if all the benefits I am experiencing during this clinical trial are all of a self-induced, self-healing nature?

I'm sure the trial involves one of the two very real substances they said I would get -- either FTY720 or Avonex -- but what if all these great results are not really from what I'm taking but because of the power of wishful thinking? I'm so psyched up about this trial that I am not willing to let myself consider the possibility of having a relapse.

Kind of like Mitt Romney's wife thinks she's put herself into remission with Equine Therapy. That would never work for me because I hate horses. There, I said it. Yes, hate me if you want, but I don't like horses. I've ridding 2 and got thrown to the ground by the first, and the second one decided he didn't want to go up the hill on the path. Oh no, he wanted to run down the hill under every low branch he could in order to knock me off, so I'm a horse hater.

No, what works better for me is to give me a pill and say "take this every day and you won't have any more MS relapses." "maybe."

Oh, and be sure to scare me by saying "if you miss taking it for 8 straight days you will have to be observed by a cardiologist upon redosing." Wow! That did it for me. I have missed a total of 2 pills in the last 6+ months. Both times it was on a day I went out of town with my mother and sister on a rare family outing. I was an hour's drive away each time I said "Doh! I forgot my pill today!"

And the shot could be the real thing, but I have convinced myself so completely that I have real Fingolimod in my capsules that the shot has got to be sterile water. Pretty cool trick if I'm getting the real Avonex then because I have all the side effects from it that you'd get with sterile water.

I'm fascinated by this Placebo Effect stuff and the power of the mind. There's a lot of MSers out there who are sick of hearing "just think positive thoughts" when being told by well meaning folks how to control their disease. The truth is, there's no real controlling of MS...it does what it darn well wants to.

But if I can keep myself treading air just by taking these pills, then I don't want to look down because I'm happy believing I'm running on solid ground.


  1. The Placebo Effect is certainly an interesting topic. And the power of the mind is even more interesting. But when considering MS and it's truly unpredictable nature, it becomes more difficult to measure the effects of placebos (if that were even a responsible study.)

    There was a time which I was running low on neurontin and began rationing it to myself while waiting for a mail-order shipment. First there was a gradual increase in pain, visible to others my an accompanied increase in irritability. Then the pain became intensely obvious as I prayed for that shipment.

    This was not a controlled study, but good enough for me to know that neurontin does indeed limit my pain. It's just a matter of finding the threshold of effectiveness/side effects and staying right at that level. No placebo effect here - simply chemical reactions.

    Now I personally thank you for participating in the Fingolimod trial. Your being a guinea pig will indeed help the rest of us, and hopefully it is helping you as well

    Take care.

  2. This is a GREAT post! And right up my...er...alley! LOL

    I could go on and on (and you must thank me that I'm NOT) about the mind, but I have a different question for you regarding the mind...what if in exploring illness/placebo effect we were to discover that not only can the power of suggestion to HEAL illness become a measurable effect...but what if the power to create illnesss existed in our minds as well??? That's really the back door to exploration regarding placebos...I'm just sayin'! LOL MAYBE WE ARE ONLY AS SICK AS WE THINK WE ARE...

    Linda D. in Seattle

  3. Oooo!! Someone who thinks like me and dares to say That Which Will Not Be Spoken around here.

    The very worst times I have had with my MS seemed to get whipped into a higher state of "OMG This Sucks" simply from my reaction, which was to go into full out Panic Mode.

    I'm sure I make it worse with my reaction...just don't know if I brought it on in the first place, but with all the Yin/Yang stuff in the universe it stands to reason that if we can think ourselves well, we probably can think ourselves sick, too.

    I know if I mention I'm feeling "off", my mom will say "now, don't go thinking like that."

  4. My mom was the 'mind over matter' type when I was growing up. We weren't allowed to be sick. Simply not acceptable.

    There was one morning where I REALLY did not feel well. Her responsive was the 'put it out of your head' and get in the shower. Well, I did as told and ended up throwing up in the shower. Then fainting in the kitchen. OK-finally, she conceded that I was sick and would be staying home.

    Currently she deals with the effects of Lupus, Scleroderma, and related connective tissue disorders. She completely understands that it's not always 'mind over matter' but that attitude certainly makes a difference in the effect of dealing with disease, or wellness.

    The mind is an amazing thing. The body is an amazing thing. And the connection between the two is mysterious.

  5. I totally agree, Suldog! The mind is a fascinating thing and more powerful that we will ever know.

    I just wish I could find a way to truly believe I no longer have MS. Maybe if I deny it to my very core and wish my immune system well, then I can actually be well.

    The trick would be to picture Myelin as our friend. Put an image in my head of the My' Guy holding out a beer or offering up a picnic basket in a friendly, non-threatening way. Maybe the T-cells will catch on and buy into the imagery that I've created of the My' Guy being a friend, not foe....and quit eating him.

    Okay, now I see everyone taking a step backwards and reaching for the doorknob...I really haven't gone crazy, I just wandered away from the sane room for a minute.

    Anyhow, the expression "I wish you well" has taken on a whole new meaning for me.

    I wish you well. :-)


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