May 12 is Fibromayalgia and Chronic Fatigue Syndrome Awareness DAy
Since today, May 12, is Fibromyalgia & ME/CFS Awareness Day, I thought it would be a good time for looking back to see how far we've come and looking forward to see what new and exciting things are on the horizon.
When I was finally diagnosed nearly 13 years ago, it was rare to find anyone who had even heard the word “fibromyalgia,” let alone someone who knew what it was. It had taken me seven years to get an accurate diagnosis. Once I had the diagnosis, I began searching for information about fibromyalgia but found little. Few doctors knew about it, and many of those who had heard of it thought it was largely psychosomatic. If any treatment was offered, it was usually low-dose tricyclic antidepressants and muscle relaxers.
Fast forward to 2009. Today you'd be hard-pressed to find someone who doesn't at least know that fibromyalgia is an illness that causes pain. By 2007, we had made quite a bit of progress in raising awareness of FM. But the FDA's approval of Lyrica as the first-ever drug for treating fibromyalgia and Pfizer's subsequent ad campaign was the quantum leap we needed to bring FM to center stage. Since that first approval, the FDA has approved two more medications for the treatment of FM, bringing the grand total to three – with several additional drugs still in clinical trials.
ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome)
A little over 18 years ago, I was diagnosed with what was, at the time, simply called chronic fatigue syndrome. Unfortunately my diagnosis came shortly after Newsweek magazine had featured a cover story on CFS, nicknaming it ‘yuppie flu’ based on the erroneous assumption that it mainly affected upper class women. While the article certainly brought CFS to the forefront, I think it did more harm than good by implying that it was a form of malingering or burnout. It definitely harmed me. Because of the negative image, I went into denial and just pushed myself harder to live a “normal” life. I have little doubt that my years of denial only served to worsen my condition.
Although there has been a great deal of progress made, the research funding for ME/CFS remains pitifully low; and patients are still fighting the negative connotations brought about by the poorly conceived name of chronic fatigue syndrome. (I'm currently involved in launching a campaign to adopt the acronym ME/CFS in place of chronic fatigue syndrome. You'll be hearing a lot more about that in the next couple of months.) Despite the poor name, dedicated researchers have been making some exciting discoveries. Cort Johnson, one of our ChronicPainConnection experts, has compiled a collection of the highs and lows in the ME/CFS field on his personal blog. If you're intersted in ME/CFS, you'll want to read this: The Best, Worst, Biggest, Least...2008 in a Nutshell
Fibromyalgia awareness and understanding continues to grow. As new educational programs to train doctors how to diagnose and treat FM take root and additional treatment options are approved, I think the future for FM patients looks bright and hopeful.
ME/CFS awareness is a two-sided coin. On the one hand, thanks to the CFIDS Association's year-long national media campaign to raise awareness, most people are familiar with the name chronic fatigue syndrome; but on the flip side, because of the name, too many people still think ME/CFS patients are just tired. Despite that gap in understanding, I think ME/CFS researchers are right on the edge of some major breakthroughs, including the identification of subgroups and the development of a reliable diagnostic tool. Also, the drug Ampligen is scheduled to be reviewed by the FDA this month for the treatment of ME/CFS. If approved, it will be the first official ME/CFS medication. Hopefully that approval will do for ME/CFS what Lyrica did for fibromyalgia. We still have some ME/CFS battles to fight, but I'm confident in the end, we'll win the war.
Happy Awareness Day!