Jedi Mind Tricks? Or Placebo Effect?

Our brains are the most complex living machine on the planet. They receive coordinated feedback from all the senses in order to determine what is going on around the body. Sometimes they cope well, but other times, they’re pretty screwed up. Our brains are easily fooled, mostly when the feedback from all the senses is not coordinated.

You’ve probably heard of phantom limb syndrome, a really interesting phenomena that occurs after a limb is amputated. The affected person feels pain in the missing limb. Well, actually, it’s the brain telling the person that there’s pain in the affected limb. No amount of telling yourself there’s no limb, hence no pain, will change your feeling of pain. (In his book Phantoms of the Brain, Dr. Ramashandran describes a simple technique to relieve this common problem for amputees)
You’ve probably heard of false memory syndrome as well. Maybe someone has told you a story about when you were a kid that you don’t recall, but the more the story is told to you, the better you can remember it – even if it never happened. It explains the dearth of “I was abused by a Satanic ritual club” stories in the 80s.
People are biased. They see information and will interpret it based on their pre-existing views. “If we believe something about the world, we are more likely to passively accept as truth any information that confirms our beliefs, and actively dismiss information that doesn’t. This is known as “motivated reasoning.” Whether or not the consistent information is accurate, we might accept it as fact, as confirmation of our beliefs. This makes us more confident in said beliefs, and even less likely to entertain facts that contradict them.” (Joe Keohane, How Facts Backfire –Boston Globe, online edition, June, 2010) Why else would a mountain of scientific evidence and admissions of falsifying evidence still not cause people to change their minds about the vaccine/autism connection?

These are just a few of the many ways our minds can play tricks on us. Not all tricks are bad; some are pretty cool, actually (especially those visual illusion ones, you know, is it a vase or two people?). And we have an enormous capacity to learn. Those two things combine to allow us to deal with any number of difficult situations, physical or mental.

In the case of phantom limb syndrome, Dr. Ramashandran had patients sit with the intact limb facing a mirror so it appeared the patient had two intact limbs. Just seeing a “normal” appearing limb and feeling an unpainful limb where they knew there shouldn’t be one because of the amputation was enough to lessen or remove the pain from the phantom limb. The patients knew they still had a missing limb, and they knew that what they saw was a mirror image of their intact limb, yet their brain saw two intact, healthy limbs. Nifty, eh? So the patients had a relatively easy way to relieve a common and painful condition, just by fooling their brains.

There was an episode of MASH a number of years ago that left a big impression on me. In this episode, the medical unit was very low on painkillers for soldiers recovering after surgery. They were awaiting fresh supplies, but in the meantime, they had to ration what little they had and come up with a creative way of dealing with what was very real pain for the patients. The doctors had a meeting and came up with the idea of using a placebo. They would tell the recovering patients that they were trying a new painkiller medication, but it was so powerful that it could only be given in small doses. They were actually administering sugar pills, a placebo. It worked for most of the patients. I realize that this was a TV show but it demonstrated what has long been known about placebos. We can use them to fool our brains.

A placebo effect is an action unanticipated by theory or known scientific data. It is a well-documented and expected part of scientific research. They are many factors involved in the effectiveness of a placebo. The relationship between the patient and the caregiver and the patient’s expectancies of the effectiveness of the treatment are two of the more important ones. In university I recall a paper I wrote about the effects of LSD on human behaviour. People who had “bad” trips on LSD were anxious about their reaction to the drug before they took it or they didn’t know they were being given the drug. People who had “good” trips, had a different outlook before they took the drug. They were looking forward to the mind altering experience and expected it to be a pleasant one. This demonstrated to me (and others), that a person’s perception of what might happen was very important for the drug to be effective in a positive way. If perception was positive, so was the experience. If the perception was negative, so was the experience.

All of this to say that perception and attitude are two of the biggest determining factors in a placebo effect and in how someone will deal with what happens to them in life. You’ve heard the term “think positive”. You’ve met people whose mindset is one of positivity. They’re the ones who find the silver lining in every cloud, the ones who make lemonade when life hands them lemons. The ones who get on our nerves. (And yes, I am usually one of those people – but not always)
The positive ones trust the people they surround themselves with – because they surround themselves with only people they can trust. Like doctors or caregivers. Or spouses. You get the idea. They have a good relationship with their health care professional and they have a positive attitude. They are perhaps more likely to follow health care advice in general and do so with a smile on their face. They are compliant with medication and look at side effects as a minor inconvenience or perhaps a sign that the meds are working. They get better, or live longer, or seem happier than the patients with negative attitudes.

Remember all the hoopla around the book, The Secret? Positive thinking was all it was about. It was Norman Vincent Peale but without all the God stuff. Norman Vincent Peal was a little ahead of his time. He had described cognitive behavioural therapy (albeit on a religious level) long before the therapy was developed. CBT is highly effective for people motivated to change their way of thinking and their behaviour. By changing your thought processes, you can change your behaviour. Think positive! Sounds simple doesn’t it? It’s not. It’s a lot of hard work, but it can be done. One simple example: someone compliments you on what you are wearing. Do you smile and say Thank you? Or do you frown and say This old thing? The first response is the one that gives you a lift because someone noticed that new sweater and it gives the complimenter a lift when you acknowledge it. You have just exchanged gifts. The second response is a put down to the complimenter, suggesting their taste isn’t all that great and you have made them feel bad by implying it. See if that person ever compliments you again.

Let’s go back to the placebo effect. Surround someone with lots of people and outings for them to go to where they have been limited before because of their illness. They’re moving around, talking and engaging with people, they’re the centre of attention for a while, they’re the focus of a bunch of people fundraising for their “treatment” that the bad ole government won’t pay for. Have them watch videos on Youtube about others who’ve had the same treatment and see how well they are now. Now send them to a foreign country, give them a treatment and tell them it might “liberate” them, where nothing else has worked well before.

Many of these folks have been isolated because of their illness or their attitude about their illness. They are not active because of their illness or their attitude. A bunch of anecdotes showing them that this treatment will work increases their expectations that it will work. And so it appears to work. This is what the doctors mean by placebo effect. As you can see there are a number of things happening, from expectations, to simple want, to bias.

I spoke with a health care provider last year and she told me a neurologist she once spoke with told her he estimated 25% of his MS patients in wheelchairs, didn’t need to be in them. Their attitude is what kept them in the chairs. “I have MS. My life is over. Woe is me.” That’s what I mean by attitude.

I’m not sure if this post helps you understand the placebo effect and why some drugs or treatments can appear to work. I found an enormous amount of really interesting stuff on the brain and how it’s fooled, on the placebo effect in general, and why it is expected to occur as part of scientific studies. I could have written for a couple of more days about the topic, but instead, I’ll suggest you type How does your mind play tricks on you? into Google and do a search.

S.

A Mother's Love

Two weeks ago, several of us from the SRA carefully placed 63 salmon in two spots on the Sackville River. These were about 2-3 pounds each so they were a couple of years old. We had to transport them in a truck and then have them fished out of their tanks and ferried one or two at a time in a rubber sleeve to the river itself. Kind of like a relay race.

Last week we put 80,000 salmon fry all over the watershed in about a dozen brooks and streams. They were only about an inch or two long, having just exhausted their nutrition from their yolk sacs. This time a truck with one tank came with us. In the tank were several square shaped buckets with the babies in them. The driver would scoop out a bunch and put them in another bucket for us to carry to the stream and we’d let them go. Lots of fun.



We’ve had almost a month of rain in Nova Scotia. If it wasn’t pouring it was drizzly. And damp. And cold. That didn’t keep me from walking or hiking, but it did make it near impossible for me to take the bike out. Normally the weather won’t prevent me from biking, but I just couldn’t do it this time. The rain stopped today, we saw the sun for the first time in weeks and tomorrow should be all right as well, so the tires are filled with air (I pumped it myself) and I’m ready for a 4 k ride to start.

With the wet weather, the bugs have held off, too. Except for those blasted red lily beetles that enjoy my ornamental lilies. The moths have begun to emerge and the bees are flitting around like they’re on speed. Not on speed was this critter. Snails are kind of gross, but still fascinating. Sooooooooooooo slow…………..and with two sets of thingies sticking out of their head they look pretty alien. The longer tentacles have eyes on them, the shorter ones are for sensory activites, like smelling and feeling.



For some reason I seem to come across animal poop in all forms and places. Today was no exception. The snail proceeded to poop before my eyes. Looking up more info on these things, I discovered that when a snail lays eggs in the ground it covers them with dirt, mucous, and then POOP. A mother’s love, eh?



S.

The Importance of Clinical Trials

Bloodletting as a medical treatment has been around for over 2000 years. The ancients believed that the human body was controlled by and contained 4 “humors”. These were black and yellow bile, phlegm and blood. While we still do look at the colour and consistency of some of these “humors” to help diagnose conditions (think of your runny nose during a cold vs. during an allergy attack), we do not depend on Humorism as a method of medical practice.

For the 2000 years that bloodletting was common, sometimes it worked, most times it didn’t. The physicians of the day believed that relieving an ailing body of some or a lot of its sanguine humor(blood) would cure the patient of whatever ailed him. It wasn’t until the 1800s, when a French doctor conducted what is considered the first clinical trial, that the practice of bloodletting as a cure or treatment was disproved.

To be fair, for a few people who have an iron overload because of a genetic condition, bloodletting allows them to live normal lives. Leeches, used for years as a bloodletting tool, are used in some surgeries to prevent clotting of some tiny blood vessels. So there is a use for bloodletting, in controlled and very well defined situations.

Before there were clinical trials, belief and experience were the bases of medical treatment. Let’s look at this in the context of multiple sclerosis:

- We know that the natural history of MS is one of relapse and remission with and without treatment. That’s the way this disease works for the majority of us. (In my case, my first attack was treated with IV steroids, then pill form for two weeks – I eventually gained back about 97% of what the initial attack caused me to temporarily lose.)

- People seek help from their doctor when they’re at their worst. We don’t go to the doc for a tingly finger, but if the whole side of our body is numb, we go in pretty fast, even though both may be symptoms of a relapse. Sometimes we aren’t even aware we had a relapse(or attack) until months or years later when we recall “that time my finger was asleep for three days” - this is precisely what happened to me; two months before going to the doctor because of increasing weakness on my right side, I had a tingly finger for three days, but I didn’t recall it until two years later when wondering if I had earlier symptoms of MS than January 1998.

- People, both patients and doctors, have a strong sense of hope and look for positive results with treatment.

- Placebo response – this is such an important topic, I will be spending an entire blog post on it.

- The power of anecdotes is amazingly strong and it is the lowest level of evidence. Again, I’ll have to spend an entire blog post on this one.

One of the many early treatments for MS was strychnine (!) After all, in small doses, it was a stimulant; anyone with MS fatigue knows what a stimulant can help us accomplish. As well, application of severe and prolonged cold wraps then blasting with cold water (that’ll get me up and moving for sure, if only to get away from the treatment), inducing fevers to rid the body of toxins , other poisons like arsenic and mercury, and electrical stimulation were all treatments for MS at some point in time. After receiving any or all of these treatments, some people with MS got better and some didn’t. I would like to suggest that those who got better did so in spite of their treatment. That’s the natural history of MS. (Remember the adage for the common cold? A cold will last 7 days if you do nothing, a week if you treat it.)
Doctors, in general, want to help their patients. Both are invested in the patient’s improving condition. We all (docs and patients) hope that we’ll get over our cold if we go to bed with chicken soup and apple juice and acetaminophen for aches. We all hope a round of steroids will improve our current attack of MS or that by taking a long term disease modifying drug the attack won’t last as long or be as damaging. If there is some improvement we, both docs and patients attribute it to the course of treatment (and not the alignment of the planets that week).

The jury is still out on chicken soup as a cure or treatment for the common cold (is it the warm steam from the soup that helps clear your sinuses, is there some nutritional factor in the soup needed to fight a cold, would drinking any hot beverage do the same thing by keeping us hydrated), but some clinical trials have been undertaken to answer these questions. The jury is in on the current batch of disease modifying drugs for MS, though. Years of research and clinical trials have been undertaken that show these drugs are effective. Yes, some people don’t do well on these DMDs, others can’t or won’t tolerate the side effects or taking a needle every day or a couple of times a week or even once a week (MS patient compliance with treatment is a big topic for docs and researchers in this field). Some current research is looking at an individual’s genetic make-up and blood chemistry response to a DMD to find out who is most likely to benefit from a certain treatment (I should know, as they continue to receive samples of my blood for this reason). My point is that we wouldn’t be at this stage in the treatment of MS without clinical trials. 20 years ago, there was nothing to offer an MS patient except hope that something would be developed or discovered soon.

Hopefully you have a better understanding of the importance of clinical trials. Our limited and biased beliefs and experiences simply can't substitute for clinical trials. They are part of what we call evidence based medicine or evidence based practice. There are levels of evidence of which I mentioned anecdotal earlier. It is the lowest level of evidence. It has not been tested or studied enough. Ethics, cost, design of studies, and the number of participants are all factors that contribute to determining the level of evidence. And so, another topic in which to delve in greater detail in the near future.

S.
PS: Much of this blog post was inspired by the lecture by Dr. T.J. Murray earlier this week. So a tip of the hat to my good doctor.

Still Here

Hey everybody! I’m still here. I finished up my first year of studies last month and have been trying to catch up on sleep and rest. I’m afraid that it took more out of me physically than I had anticipated. Looking back, I sometimes wonder how I kept going.

There’s not a lot new going on. I will spend the summer on a few projects both at the building and at the Sackville Rivers Association (SRA) office. I’m looking forward to starting up again in September to learn more stuff.
I did accept a (volunteer) position on the Board of Directors for the SRA. I hate meetings of more than two people, but hopefully these guys have agendas. If not, they WILL have them from now on. I went into the office recently only to discover that our dear leader, Walter, had been ordered by the fire department to do some “clean up” of all the papers on the walls and in storage. So I’ve begun the daunting task, along with my new best friend, Melissa (from school), of sorting through 20 plus years of paperwork. We need a database of all the info we’ve gathered over the years related to the river, the watershed, acid rain, etc….Apparently there is some sort of one somewhere already, but it’s probably buried underneath all the paperwork. Now that I have the basics to do database on the computer, I think we’ll have a better shot of building something everyone can use and have access to.

And of course, the CCSVI saga continues. I went to a most interesting lecture the other night, presented by neurologists and a neurology physician assistant. Are you interested in learning about why we need clinical trials? How long it takes for a drug or treatment to reach the general public? Why we shouldn’t be jumping on the CCSVI bandwagon? Then stay tuned dear readers as I have the answers.