Friday, 8 March 2013

Doctors Dropping the Ball: Why Fibro Patients Should Be Worried

People still tell me I was crazy. But way back in 1989, my wife and I, just married, packed up and left sunny California to move to Canada, the land of ice and snow. I had just spent a year working as a private Internal Medicine specialist, but now was returning to do two years of training to become a Rheumatologist, an arthritis specialist. Meanwhile, my wife was returning to school too, to further her training as a biochemist.

"But WHY Canada?" people asked us, thinking that this meant we were suddenly going to start living in igloos and eating whale blubber, and only speak some strange northern native language. To be honest, the main reason we were making the plunge (or should I say slide, since everyone knows Canadian waters are frozen 13 months every year) was that Donna and I both are Canadian, love Canada, and enjoy donuts. But another reason I looked forward to the move was that I heard that where I was going, they had specialized inpatient Rheumatology units, where patients with severe arthritis and sudden attacks of arthritis could be admitted for intensive treatment, including physiotherapy and pool therapy and so on. That seemed really progressive and patient-centred to me.  Soon after I arrived, I learned that, not only did they have a unit for arthritis patients, they also had 3 inpatient beds reserved for patients with fibromyalgia, to give them intensive therapy and education early in their illness, to help them feel as good as possible as quickly as possible.

But then things changed. I think it was about 1991 that University Hospital lost its three designated fibromyalgia patient beds. But no worries: to replace it, a nice new 2-week, intensive outpatient program was created. Of course, this made it difficult for fibro patients who lived out of town (just where do they stay during those 2 weeks?); but at least it was something.  Next to go, a couple of years later, were all the arthritis beds, so fibro patients could no longer even be squeezed into an arthritis bed.  But that was okay, because fibromyalgia patients still were being seen by most if not all the Rheumatologists in town. But then, that all changed. Sometime about five years ago, none of the Rheumatologists working out of the hospital were seeing fibro patients anymore.  A couple working in a community clinic and private office were. But at least everyone still had that wonderful and now well-established and perfected two week program.

I just found out that this program is now closing too. And this comes on the heels of a recently-published survey of Ontario (that's where I live) Rheumatologists, in which more than half (55%) said they felt fibromyalgia was MOSTLY a psychosomatic disease, and only one in four were even willing to see fibro patients anymore. This, to me, is both tragic and inexcusable. To begin with, as I clearly demonstrate in my book, Breaking thru the Fibro Fog: Scientific Proof Fibromyalgia Is Real, the evidence is now OVERWHELMING that fibro is a REAL PHYSICAL ILLNESS. In fact, it is a multi-systemic disease, which involves the central and peripheral nervous system, the autonomic nervous system, the immune system, the endocrine system (hormones), the gastrointestinal system and the cardiovascular system. In many ways, it is as complex as diseases like systemic lupus. 

The other way in which the disheartening results of this most recent poll are so horrific is that it was Rheumatologists who have been behind much of the positive research that has been done in this area. People with fibro and those who love them owe much gratitude to the likes of fibro pioneers like Hugh Smythe, Muhammad Yunus, Jon Russell, Robert Bennett, Dan Buskila and many, many others. Though they still advocate for those with fibro... what about all the other Rheumatologists? Don't they believe their colleagues anymore? Again, the research proving fibro is real should now be considered undeniable.

And so it is that next month I set off on tour again, starting in the UK where I have a series of talks. But I can't do this alone. Please send people to my website to learn more... there's lots of free information there, including a famous editorial I published in 2004 called Fibromyalgia: The Answer Is Blowin' in the Wind. In that article, I borrow two lines from the incomparable Bob Dylan's wonderful song:

How many times can a man turn his head, and pretend that he just doesn't see?
How many ears must one man have before he can hear people cry?

It's time for people with fibromyalgia and those who love and support them to fight back. It is time for everyone who sufferers from this tragically-misunderstood disease to be seen and heard.

Kevin White, MD, PhD, multiple award-winning researcher, author, teacher & speaker