Fibromyalgia and chronic fatigue syndrome haven't been high-interest conditions. Now that they're starting to get more attention in the popular media, some people have charged that they're "made up" by drug companies just wanting more people to take their drugs.
I'm not going to debate whether drug companies would like to be able to invent illnesses, but even in our system of a weak, underfunded FDA and a strong pharma industry with a lot of money at stake, it's just not possible for drug companies to "make up" diseases. Plus, these illnesses have histories that long precede drug-company interest or involvement.
A History Lesson
First, it helps to know that these conditions weren't always known by their current names. Fibromyalgia has been called several different things, including muscular rheumatism and fibrositis. This set of symptoms has been studied since the 1800s. The first drug approved for it was Lyrica, which got the FDA stamp of approval in 2007. Now I know drug trials take a long time, but I've yet to come across testing periods that last more than a century!
The first name for chronic fatigue syndrome was neurasthenia -- a term that was coined way back in 1869, for a condition that had been around long enough to be on the medical community's radar. It was 119 years later that the CDC first used "chronic fatigue syndrome" to describe the same set of symptoms. The pharmaceutical industry still hasn't succeeded in approving a single drug for this condition, after 140 years. If they'd invented it, wouldn't they make sure they had something to treat it?
The Drug-Testing Process
The way the system is set up, there's really no way a drug company could start touting a product for an illness it had created. To even get approval to start testing, they have to show data suggesting that the drug could help an illness that's already established in medical literature. While I'm definitely critical of many aspects of the FDA, there's just no way a drug company could go to them and say, "Hey, can we test this drug for chronic XYZ disorder?" and have the FDA respond, "Well, we've never heard of chronic XYZ disorder, but what the heck -- go ahead!" It just can't happen.
The real problem here is that most people either know nothing about these illnesses or have gross misperceptions of them. Couple that with a growing distrust of big pharma and governmental drug regulations, and when people see an ad for Lyrica or Cymbalta for fibromyalgia, or a headline about Ampligen for chronic fatigue syndrome, they think: "I've never heard of that, it can't be real;" or "That just sounds made up;" or "I heard that was all in people's heads." They don't trust the messenger, so they don't trust the message. Our advocacy groups do what they can for awareness, but they don't have the money it would take to drum the reality of these illnesses into people's heads.
While there's no short-term solution to this problem, turning once again to history can help us see the probable resolution -- it wasn't that many decades ago that multiple sclerosis was considered a label for lazy malingerers or crazy hypochondriacs. Can you imagine someone saying that now? Slowly but steadily, fibromyalgia and chronic fatigue syndrome research is making progress, and someday scientists will find the smoking gun. The public will become more aware and more informed as information emerges, and eventually we will be validated.
Have you encountered someone who believes this myth? How has their belief effected you? What other myths would you like to see debunked? Leave your comments below!
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More Debunked Myths:
- Fibromyalgia & Chronic Fatigue Syndrome are 'Laziness'
- People With FMS & ME/CFS Need 'More Exercise'
- Fibromyalgia is an 'Autoimmune Disease'
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