Monday, December 12, 2005
CFIDS and Diastolic Cardiomyopathy
Since no one has died directly from CFIDS and because unremitting extreme fatigue is a hallmark, it is easy to make fun of people who say they have the disease. "Yeah, I get tired too but you don't see me in bed all day." Adding to the confusion is the fact that there are no definitive blood or lab tests which can provide an unmistakable positive diagnosis. This also made it very susceptible to misdiagnosis and over-diagnosis by doctors unfamiliar with the symptom guidelines or the necessity for eliminating other conditions before settling on a CFIDS identification.
Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome is a book chronicling some of the research into the causes of the disease and is a detailed and fascinating look at CFIDS. Its tone is very reminiscent of And the Band Played On by Randy Shilts about the development of AIDS research and theories.
Recent developments may have finally cracked some of the mysteries around the causes of CFIDS. Dr. Paul Cheney, a longtime specialist in CFIDS, now thinks the disease may be related to a heart condition called Idiopathic Cardiomyopathy (ICP). He thinks a variation on this condition causes many of the symptoms of CFIDS because the patient's body is attempting to compensate for the ongoing heart problem. He's dubbed it Diastolic Cardiomyopathy or sometimes Compensated Idiopathic Cardiomyopathy but he seems to have settled on the former term.
In ICP, the heart doesn't push out enough blood. The CFIDS variation does not preload enough blood into the heart, reducing circulation throughout the body, particularly extremities. This reduces the available oxygen and nutrients to all parts of the body. There is more to this theory but that is the bare bones of it.
A long video (three hours and twenty minutes) of a presentation by Dr. Cheney in June, 2005 has many details on his current findings. It's available for $18US.
The most promising course of treatment appears to be removing bone marrow from the patient and injecting the patient's own stem cells into their heart. A BBC report and a Science News report give some details on this treatment. Currently, this protocol is only available in Germany and not in the US.
CFIDS is not a joke to those who have it. To get an inkling of what it's like to have CFIDS, try to remember what you felt like at the end of an exceptionally active and physically tiring day. The kind of day that leaves you bone weary with aching muscles and practically unable to get up out of a chair once you slump into it. Perhaps you wonder if you can even make to your bed. This is what many CFIDS patients feel like all the time without having done any activity. They wake up like this; this is their starting point for the day. Even mild exercise, which in a normal person would increase stamina and strengthen the body, will actually damage a CFIDS patient's body. A little too much activity might actually leave them more weakened for days or even weeks.
I'm just hoping the current theory pans out. People with CFIDS could use a break after twenty years of investigation. Or non-investigation. The Center for Disease Control (CDC) was allocated millions of dollars over several years for research into CFIDS. They spent most of the money elsewhere despite specific Congressional budget mandates. Osler's Web provides some details on this misappropriation of funds.
Ugh! And with that light note, good night.