Cure for MS? Sure, if you get off your butt and enroll in a clinical trial!

So, here's the deal.  I realize I spend a fair amount of time ranting about stuff that I'd like to think I know something about but that you probably don't agree with.  I do it because I feel like being soft is not going to help anybody.  The stakes are higher for me and for you, so I'll do what I think works.  Don't read it if you don't want to hear it - but it may do you some good!

The real reason that I initially started this blog as you may recall, was to promote participation in clinical trials.  Clinical Trials: this I actually DO have some experience with, both as a participant and as a member/consultant on several IRBs (Institutional Review Board - the body charged with evaluating the research to ensure that it's scientifically sound, clinically relevant, and ethical - the IRB answers to the Feds).

I will post regularly on the different aspects of clinical trials and what they mean, how they're run, why they're important, and why they're pretty safe, but I'm going to start by making a general point (or two).  Clinical trials are the FDA's mechanism for testing, evaluating, and approving new drugs.  Guess what, folks - no clinical trials = no new treatments or cure.  This is the case with ANY DISEASE OR CONDITION.

Anybody know what the biggest bottleneck/source of delays in drug development is?  Anybody... anyone...  IT'S ENROLLMENT!  (the capital letters means I'm yelling it).  As I'll explain in a future post, it typically takes 10 years or more to take a drug from an idea to the pharmacy ("bench to bedside" in the pharma world).  we're all hoping for better drugs to make treatment easier, more effective, or even halt progression.  I've read that enrollment problems can lengthen the time-line by 30% or more.  The math isn't hard here - 10 years under ideal conditions is a long time to wait.  13 years is frustrating to say the least.  More than 13 years?  You can see why I feel so strongly about this.

Here's the other thing that I think most people don't consider, or understand, or... I don't know if they're even thinking "big picture" enough to care.  A failed drug trial (i.e. the drug trial that you're on that doesn't work and you think was a waste of time) is still a very big step for drug discovery and it brings us that much closer to something that works.  Here's why - What's the number one objective in a clinical trial?  To succeed, obviously.  As trial phases progress, you're talking more people and a lot more money.  The mantra of most companies performing clinical trials is "if you're gonna fail, fail early!"  This does a couple of things: 1) it saves money by not getting into the later stages of the trial, enrolling more volunteers and spending more money only to find out that it "almost worked."  2)  IT FREES UP A SPOT IN THE PIPELINE FOR A NEW INVESTIGATIONAL DRUG!

The objective here is to keep as many potential drugs in the pipeline as possible.  The more drugs tested - the more likely we are to find one that works... make sense?  DO NOT DRAG YOUR FEET!  Clinical trials are pretty darn safe and they are beneficial for a number of reasons besides the obvious - I'll get into that in future posts as well.  There are always risks, but there are risks associated with going outside, riding in a car, or taking a shower.  Don't be a baby about it - given your situation, don't you think that a little (perceived) risk might be invigorating?!  If it turns out to be a bad experience, you can always drop out.  They even draft that very language (i.e. "you may withdraw at any time") into ALL consent forms.  Give it a shot - PLEASE.  And do me a favor and let me know if you do.

*Remember, there are instructions for how to find a trial that's right for you on the right hand side of this page.

Opportunity or sentence? Your call, but I'm not going to waste it.

I can't stand pity.  I was diagnosed with MS during the summer of '08 and was pretty depressed about it for almost a year.  I was a marathoner and suddenly couldn't run, or even walk short distances, without feeling faint.  Of course, I thought my life was over - I was Superman before the diagnosis and suddenly was completely dependent on my wife to do anything that involved physical activity.  I was certain I would be in a wheelchair within 5 years.

I'm over that now.  I may or may not end up in a wheelchair.  I'd prefer not to be, but what the hell am I going to do about it?  It seems to me that the most logical move is not to whine about it, but to do what I can to push forward and use my knowledge of research and health to make a difference.  Sound too altruistic?  Maybe, but I know that I get annoyed by people like Montel Williams, who is probably a really nice guy, whining all of the time about having MS.  Seriously?  Use your celebrity to do some good and get people to work towards a cure... not to complain!

I am constantly experimenting with my own diet - what makes me feel better short and longer term.  I do it so often that I find it hard to say with any certainty that any one thing is making the difference.  I've learned a lot about myself that I might not have learned without the MS diagnosis.  That's not to say that I think it's a blessing, but you have to make the most of the cards you're dealt.  Stay tuned for more on that.

I am a strong proponent of clinical trial participation.  ENROLL IN ONE, YOU BIG BABY - IT WON'T KILL YOU!  I'll talk about clinical trials and why they're pretty darn safe - and why enrollment is the key to an effective treatment or cure in future posts.

Thanks for following.  I hope to make this fun and informative... and I would be nice if it became a forum of sorts.  I take criticism well, so let me have it.  If you don't have MS, great - I'd like to hear from you, too.  If you're my brother - you're allowed to make fun of me here, but not at family gatherings - what happens in this blog stays in this blog.