Posts Tagged ‘research’

Want to participate in a research study?

October 3, 2009

You might be interested in participating in a research study about fibromyalgia. An online program is being studied/created to help fibro patients examine their fibro and their lives and potentially identify ways you personally can manage your fibro. It’s free, confidential (and anonymous, if you use a dedicated anonymous email address). It requires a little bit of your time, but that’s to be expected. It doesn’t require you to be a guinea pig for experimental drugs, or even to talk to anyone, but it does involve providing information about your health.

http://www.fmwellness.org/index.htm

From the website:

The Fibromyalgia Wellness Project, a research study sponsored by the National Institute of Arthritis, Musculoskeletal and Skin Diseases (NIAMS), National Institutes of Health. This project is conducted by Collinge and Associates, an independent research organization directed by William Collinge, PhD. The project is now inviting participation by people living with fibromyalgia.

Project Description:

Fibromyalgia (FM) is a long-term chronic illness that touches millions of lives. While there is presently no medical cure, different approaches to treatment and symptom management help reduce symptoms to different degrees in different people. One way the person with FM may be able to have significant impact is through the careful management of lifestyle and behavior factors that affect symptom levels. However, since each person is unique, management of FM needs to be highly individualized.

Because there are so many options and influences to consider, one challenge people with FM face is discovering what strategies work best for them. The purpose of the FM Wellness Project is to evaluate a completely individualized approach to symptom reduction. The goal is to empower users with uniquely personal insights into what strategies work best for them over time.

Fibromyalgia as a legitimate disorder

March 11, 2009

Last week, my husband and I were going a bit stir-crazy being cooped up in the house so much. We’ve been busy packing, and my husband has been busy with schoolwork, but it was getting us down. We decided to pack up and take a day trip to Chicago (well, a quick overnight trip). I figured it’d be a great way of testing out my new pain control.

And I did do pretty well, I have to admit. I walked and walked and walked, with minimal complaining. However, my fibro flared up and made my shoulders ache. My skin hurt all over. I spent 3 days after we got home just lounging on the couch and dealing with nearly unbearable pain in my shoulders and neck. Okay, fibro, I get it. You win this round. But I still get credit for covering so much ground on foot in Chicago.

A news story was published today saying, “A Massachusetts anesthesiologist has been accused of fabricating results in nearly two dozen published studies that claimed to show after-surgery benefits from painkillers including Vioxx and Celebrex.” Other drugs included Lyrica and Bextra. (source) The plot thickens when we find out that this doctor was funded by Pfizer for 5 years to study the effects of their own drugs for pain control. It sure does seem shady. I would like to believe that Big Pharma has only one noble goal: to cure people. But I’m bitter and jaded (and an ex-pharmaceutical employee), and I know that every pharmaceutical company has the same goal, and it’s not about curing people. It’s about making money. Obviously they’re making money by improving quality of life for some people who can afford it, but the bottom line is the almighty dollar.

Fibromyalgia is a vague disorder (more of a syndrome), diagnosed by excluding everything else. Those of us who have fibromyalgia have a lot of similar symptoms (including symptoms that are not in the diagnostic criteria but probably should be), but I admit we’re an exhausting bunch. Our symptoms change from day to day, sometimes several times a day. We may not know exactly when our symptoms started, because they’re so vague and creep into our lives slowly over time. We may not be able to articulate what hurts and how it hurts because the pain is so complex, deep and throbbing in the muscles yet the softest touch on our skin feels like we’re being stabbed with a serrated knife. And, let’s not forget, those of us who are fat are usually told our problems are due to our weight, because that’s much easier than working towards a diagnosis and treatment plan for a bunch of annoyingly ambiguous symptoms.

This makes it very difficult for me to trust the pharmaceutical companies. I’m not sure they have our best interests in mind. Fibromyalgia has had diagnostic criteria since 1990, but it’s been fairly vague (with the exception of the Tender Point Test, which requires doctors to be very precise and consistent when conducting). Then along comes Lyrica, with a vague list of indications. Lyrica, meet fibromyalgia, “a textbook definition of an unmet medical need,” according to Pfizer (source). Unmet medical need, or unmet need for profit? Lyrica pretty much cleared the billion dollar mark in its first year (source), as well as opened the door for a whole new chapter in Pfizer’s portfolio: fibromyalgia drugs. Since then, Lilly’s Cymbalta has also been approved for the treatment of fibro, and there are more drugs coming down the pipeline.

It’s almost like fibromyalgia was tailored to fit the drug, not the other way around. The fact is, fibromyalgia is a real disorder, with real symptoms, and real people suffering from it. The symptoms may be vague, but they’re there, and they’re predictable. Not every doctor has bought into the reality of fibromyalgia as a disorder, but they also used to treat homosexuality as a disease and practiced bloodletting to treat fevers, so I have hope they’re going to come around eventually.

Unfortunately, I think fibromyalgia is just a victim in the crossfire between the need for more government-funded research and the profit-driven privately-funded research conducted by pharmaceutical companies. If the government funded more research in this area, they could strive to fund less biased researchers, such as the ones at universities. Pharmaceutical companies could spend more time manufacturing less expensive drugs with more of academia conducting research instead of Big Pharma doing the work. I want to see more research being done with chronic illness, and I don’t want to hear about doctors funded by Big Pharma grants sitting in a room together creating some diagnostic criteria to fit the indications for a new blockbuster drug. I know my solution isn’t perfect, and I’m not claiming this is the only right way to solve this problem, but I’m getting sick and tired of reading about how fibromyalgia is a “murky” disorder, and I’m even more sick of hearing that it’s all in my head. (One more link on the subject, here.)

And my disclaimer: I’m not arguing that Lyrica and Cymbalta are not effective for people. I know these drugs work and have turned lives around for many people suffering with fibromyalgia. I want these drugs to stay on the market, and I want people to continue using them responsibly, if the drugs are helping them. But what I don’t want is another conveniently vague disease plucked off the shelf to extend the patent life of a drug. We should be researching fibromyalgia for the sake of understanding it better, not for the sake of selling drugs.