Saturday, September 20, 2008

Scientific Method

Scientific method is an accepted way to investigate events and to acquire knowledge about them.

From Wikipedia:
To be termed scientific, a method of inquiry must be based on gathering observable, empirical and measurable evidence subject to specific principles of reasoning. A scientific method consists of the collection of data through observation and experimentation, and the formulation and testing of hypotheses.

This method of observation and testing aims to get at the truth of something. Aside from gossip about Paris Hilton, we want the truth about things. And while some things may seem obvious to us, a scientific approach to them is what gets researchers and authorities to take note, perhaps throwing more money to causes to find out more.

Anecdotal evidence as defined in Wikipedia:
- information that is not based on facts or careful study
- non-scientific observations or studies, which do not provide proof but may assist research efforts
- reports or observations of usually unscientific observers
- casual observations or indications rather than rigorous or scientific analysis
- information passed along by word-of-mouth but not documented scientifically

When the results of scientific studies are released, the methodology of collecting data or conducting experiments is also released with it. That allows others in the scientific community to scrutinize the studies and allows for reproduction of the studies as well as statistical analysis of the results.

If a scientist publishes a study but does not fully disclose methods or is found to have falsified results, there is hell to pay. The scientist may be censured or lose funding.

We in the MS community "know" a lot of stuff about our illness. We "know" that heat can wipe us out, we "know" that stress can be bad for us, and we "know" that our hormones can exacerbate symptoms. I put "know" in quotation marks to indicate that while these statements hold true for many of us, they don't for all of us; that's why we need studies of the effects of heat and stress and hormones (and a number of other things) on the course of MS. We need to either prove or disprove things about MS in order to treat it.

In the early days after my diagnosis, a lot of well meaning people came to me with stories about friends or friends of friends with MS who took such and such and then miraculously recovered or had astounding improvements. That's nice, I would respond, and then try to figure out if the magical cure had any merit. Few did. Some involved participation in some sort of marketing scheme of the product. And the product would be expensive. Similar results could be gained from a not so expensive product, like a bottle of vitamins. I started asking questions of the people telling me the stories, like "what is the mechanism of action of the product?". After a while, people realized that I wanted scientific evidence so would stop trying to "sell" me on a product and they became more selective about what they told me, only referring me to scientific studies. They don't know it, but I was slowly educating those around me about the scientific method.

I like this one:
"non-scientific observations or studies, which do not provide proof but may assist research efforts". If an idea has merit, it will be studied. For a number of years, many people were touting bee sting therapy as a cure for MS. So the scientific community took notice and began to study it. The results of the studies are mixed at this point, but at least the idea is being studied. Other alternative treatments have to be studied as well. And when they are, and results are favourable and repeatable, and don't require me to market a product in some sort of pyramid scheme, I'll jump on the bandwagon.

The point of all this is that there was a big meeting of a whole bunch of international MS researchers in Montreal this week. I've been following the news and press releases and many of the studies may have some in the MS community shaking their heads and saying "Well, d'uh! I could have told them that!". But in order for the scientists and researchers to get to the bottom of MS they have to use scientific methods. And that takes time. (As well, they are researching some anecdotal events.)

Do you want the truth? Or do you want to spend time and money, possibly risking injury or death on something that hasn't been tested?

I want the truth.



Denver Refashionista said...

I too want the truth and I want data to back things up. That is part of the reason I am not currently on DMDs. I want more long term and compeling evidence of their merit.

Shauna said...

Copaxone has been used since 1986 and Avonex since 1993. Avonex has been shown to reduce the number of and severity of relapses. No, DMDs are not a cure, but they're currently the best we have at the moment. And no, they don't work for everyone. But neither do antibiotics or flu shots.

By the time a drug has reached the Phase 111, double blind stage, it has already been used by a target market for a couple of years, being tested for safety, tolerance, and side effects among other things, including effectiveness. If it hasn't shown any sort of effectiveness by that stage of the game, it's fair to say it's not going to make it to the double blind part.

Then it's a matter of continuing long term observation of patients. And so far, in the 10 years since my diagnosis the major DMDs are holding up to scrutiny.

Part of the problem with the DMDs is that some people seem to have little tolerance to them or the way they are administered. Other people, they are now discovering, are not genetically compatible with them, in much the same way that some folks are allergic to antibiotics. But statistics still show the efficacy of these drugs.

The other part of the problem with MS in general is its unpredictable nature. For some of us, sadly, there's absolutely nothing we can do to improve the prognosis.

We hear an awful lot about people's negative reactions to the DMDs on the net. Perhaps there are more bloggers who've had bad results than bloggers with good results. Don't let the anecdotal evidence keep you from trying a treatment that may work for you. Out of curiosity, how long term do you need?

It may sound like I'm pushing the DMDs. I'm not. Yes, I'm on Avonex, and in the 8 years I've been taking it, I've had only one relapse. There's my "full disclosure". If you have adverse reactions to a drug or you continue to slide downhill after starting on one, then I'd recommend trying something else. And your neuro would probably say the same thing.

In the meantime, continue what you're, meditation, researching, and communicating with the rest of us about our experiences. That's some of the best medicine for you.



Yes, the ACTRIMS (I think I got all the letters in there right?!?) conference generally does churn out some interesting ideas and research. It was held in Prague last year and I haven't heard where it will be in 2009...

Glad to see the Canadians hosting as I DO love those (you) derned Canadians!

Linda D in Seattle

Mandy Crest said...

I want the truth.

I want scientific evidence.

I want research... research... and more research.

I want to learn how to accept that well-meaning, but uneducated (in MS) people will never stop informing me about the latest cure they've heard about.

Bubbie said...

I also search for truth. My problem is my cynicism with the industry. There is so much money to be made on a product that "works". Clinical trials seem to be askew when they only include persons with very low EDS scores. If I had participated in one of these trials 20 years ago (before diagnosis) I would have given them great numbers to "prove" that I remained relapse free for 5 years.


Research and data, obtained by well-designed trials, based on solid hypotheses. That's what I'd like to see.

Shauna said...

I luv ya', too....

Some of those well meaning people are open to a brief MS 101 if you're willing to teach. Others I ignore, say thanks for the info, but it's not for me.

I, too, am cynical. Actually, I often say I'm an optimistic pessimist. I try to look for the "catch" with everything. And I analyze what data I come across, especially paying attention to sample size and length of the study.

I'll see what I can do! ;)


Shadowfixer said...

It is also important to remember that we can't prove things with the scientific method. We CAN disprove them though. So we start by assuming something is true, and then ask ourselves, how do I prove that it isn't?

Oddly enough, its the same approach we use in debugging computer programs:

1) Take a wild guess
2) Prove the guess is wrong
3) Use that information to take a less wild guess
4) Repeat....... :)