Saturday, February 4, 2006

What's in a Name?

How bad can a disease named Chronic Fatigue Syndrome be?  I mean, every overworked person in America is always tired.

Here are some comments from the experts -- doctors who have researched the illness, not patients who are exaggerating to get sympathy and disability benefits.

Testimony [to Congress on May 12, 1995] revealed significant information on the physical ramifications of the illness as well. Dr. [Mark] Loveless, [professor and Head of the AIDS and CFS Clinic at Oregon Health Sciences University] who has spent many years studying AIDS and CFS, states, "A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." This chilling commentary is supported by specific clinical data from research conducted at the Oregon Health Science University as well as the general opinions of other medical experts.

Professor Leonard Jason called CFS “actually more debilitating than just about any other medical problem in the world”

Dr Dan Peterson, who was one of the doctors to first identify the 1985 Incline Village CFS epidemic, when asked on CNN how many of his patients had fully recovered in fifteen years, chillingly stated "None".  Dr. Peterson’s Medical Outcome Study revealed that no other set of patients had ever measured so poorly. CFIDS patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses.

Patients with CFS have reported being too exhausted to chew -- they have to live on liquids.  The most famous current CFS patient, Laura Hillenbrand, author of Seabiscuit, reported periods when she was too exhausted to roll over in bed or even blink her eyes.  Clearly, this is not "fatigue" as most people understand it.

Personally, I've never run a marathon because of my asthma and bad knee, but I have walked the equivalent distance in one day, more than once.  I now wake up in the morning feeling more tired than I used to when I returned from a 25+ mile walk. 

CFS is not deconditioning -- Olympic-caliber athletes have succumbed to it.  In under a week, I went from being able to walk 4 miles a day to having to rest for more than an hour after walking 4 blocks.  It is physiologically impossible to decondition that much, that fast, and proves that you can't exercise your way back to health ... if that were the key, athletes who train daily wouldn't get CFS in the first place, and they wouldn't relapse when they start training again.

My first diagnosis -- before CDC imposed the minimizing name -- was Post Viral Syndrome.  That is what CFS really is: a virus that never goes away ... just like AIDS.  But they get the respect, and we don't.  Even though Dr. Loveless, who works daily with both AIDS and CFS patients, says it's the CFS patients who are sicker, most people think that AIDS patients are sicker, because they got better PR. 

It's obvious that people with AIDS aren't faking, because they die.  But, generally speaking, patients with CFS don't die ... they just endure a "living death", to use jazz musician Keith Jarrett's assessment.  And in most people's minds, people with serious illnesses are supposed to die of them, not linger in a debilitated state for decades.  Since we don't fit the stereotype of what effect a serious illness should have, the assumption is that we're faking.

Or maybe, just maybe, we have a disease that doesn't fit the stereotype.

Dr. Paul Cheney, the other doctor involved in the 1985 Incline Village epidemic, has been researching CFS for more than 2 decades.  His conclusion, based on 2000+ research studies worldwide, is that CFS is really Compensated Idiopathic Cardiomyopathy.  In plain English, the body wisely prevents the patient from pushing herself to the point of total heart failure, and it's that regulating mechanism that prevents us from dying.