Fibro Daily

My Guilty Confession about Clinical Trials

Fibro Daily December 22, 2016

biolaboldmain1905_2 Would you take part in a clinical trial to find a cure for fibromyalgia, or to find a better way to manage fibromyalgia?

Without the backing of trials, few people take so-called treatments seriously. Many of us want treatment results on paper, results that meet certain testing protocols and projections. Testing also helps gauge and guarantee safety.

If a treatment remains untested or is tested incorrectly, no one takes it seriously, especially not doctors.

That’s bad news if you want a fibromyalgia cure, or at least a better way to cope with the pain, fatigue, and additonal debilitations brought on by this painful condition.

Therefore, in order for treatments to evolve, clincial trials involving actual patients must occur. We need them. I support well conducted ones, and I support them one hundred percent.

Which brings us back to the original question: Would you take part in a clinical trial to find a cure for fibromyalgia or at least a better way to manage fibromyalgia?

Some people just can’t take part in a study because they fail to meet the criteria. But what if you do fit the criteria, have an actual chance to participate, and don’t want to do it? It’s something to think about because the scenario poses serious questions that I’ve thought about often through the years. See, I’ve been asked to participate in medical testing yet haven’t done it because the timing didn’t work out or I ended up not fitting all the criteria.

But also, there were times I didn’t want to participate. Yep. Although I support well-conducted clincial trials, I don’t want to take part in them. There’s a lot of fear that creeps up when asked to join a study. What are those fears?

Well…

Worsened Health Or Death

I’m not anti drugs to treat sickness because many lives have been saved by drugs. For instance, type 1 diabetics live because of insulin. MS patients benefit from various types of drugs, depending on the type of MS that affects them.

Still, so much remains unknown about fibromyalgia and fibro treatments. Some type 1s and MS patients volunteer for risky trials, but fibromyalgia treatments seem so new to me that the whole thought of taking such new drugs for a trial freaks me out. And some trials involve what seems like painful treament methods. I would endure pain to get rid of pain, but not so sure I want to endure it if the outcome’s unknown. That’s a lot of time that could’ve been put toward relaxing yoga or projects not related to fibromyalgia.

Which brings me to my next dilemma.

Bad Timing

Researchers conduct trials under strict guidelines. One of those guidelines includes the availablity to stick to the trial schedule. That includes showing up for tests and results, talking to doctors, and more. Not only that, but participants must sometimes adhere to stringent lifestyle stipulations about diet, drinking, exercise, and more.

I am not so sure I want to devote my time because my life works pretty well right now. I workout frequently, my weight’s good, I work on several creative endeavors… the thought of changing any of what I’ve achieved upsets me. I feel bad for wanting others to devote their time, though. And because of that, i feel guilty.

Just how much should I expect to be helped when I can’t stand the thought of trying new drugs, new treatments or giving up my time?

It’s an awful catch-22. But even while struggling with these ideas, people are putting themselves on the line so we can all feel better. And for that, I’m more than grateful.

Trial Updates

Medical professionals continue working on fibromyalgia with patients. It makes sense to know what’s going on in that area. Health Rising recently posted an in-depth piece about fibromyalgia clinical trials and I think it’s a great source:

In this blog we look at the 40+ treatment trials that drug companies, device manufacturers and others, hoping that they’ll be the next big thing in FM, have invested a good bit of cash in. Plus, we’ll look at some other pain-killing possibilities under study now.—”Coils, Lasers and USB Ports to the Brain: the Fibromyalgia Clinical Trials Overview” by Cort Johnson for Health Rising

Read more:

Coils, Lasers and USB Ports to the Brain: the Fibromyalgia Clinical Trials Overview

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