Letter to Dateline/NBC
August 25, 1996
Is there some edict that has been passed down through the ranks at NBC saying that, in regards to Chronic Fatigue Immune Dysfunction Disorder Syndrome (CFIDS) and Fibromyalgia (FM), all journalistic integrity can be abandoned because, hey, we're just dealing with a bunch a feebs anyway?
Certainly, whether on Dateline or the Today Show, NBC has shown a notable lack of insight, research, and common sense in dealing with both this disease and the facts surrounding Dr. Kevorkian's criteria.
Let me tell you how I spent my 36 birthday. I went to Harbor General-UCLA Hospital where I spent a half hour sucking radioactive gas while my head was stuck in a huge scanner so that the oxygen level in my brain could be evaluated. I then went into the cardiopulmonary lab where the doctors hooked me up to a computer-driven exercise bike, an EKG and stuck a tube in my mouth through which I was supposed to exhale. I was then told to pedal as hard as I could for as long as I could to keep up with the resistance set by the computer. The EKG monitored my cardiac rate, and the tube through which I exhaled monitored my PO2 function. When I had reached my limit of pain and was gasping for air, I sat for 20 minutes to wait for blood levels to peak and then had blood drawn. I then went back into the scan room, sucked more radioactive gas and had another scan. The next day, I went back to the hospital for a third dose of radioactive gas and a scan. (I might add that prior to the onset of CFIDS, I walked 4 10-min miles four times a week, played racquet ball 2-3 hours a week and worked out 3-4 times a week - all before 6:30 a.m. so I could get a jump on my day. Now, changing the bed linen is a major exertion event for me.)
What was found was something that can't be found by any coroner on a dead body: areas in my brain that were low in oxygen to start with that became increasingly deprived of oxygen after the exercise, such deprivation lasting more than 24 hours after the exercise. That, ladies and gentlemen, is one of the hallmarks of CFIDS. That, ladies and gentlemen, is why CFIDS patients cannot exercise. In healthy people, including those suffering from "mere" depression, not only are brain oxygen levels higher to begin with, they INCREASE after exercise, such increases being sustained for 6 hours or so after exercise before falling to normal levels. People who exercise regularly feel good due to the rush of endorphins, increased oxygen and boosted metabolism generated by the exercise. CFIDS patients are forced back to bed for 24-48 hours after even the mildest of exercise due to their already oxygen starved brains being deprived still further, and the pain caused by the buildup of various chemicals in their muscle tissue. Other researchers have shown that merely thinking, such as that required to do basic mathematical calculations in the head, bring on the SAME reduction in brain oxygen and buildup of painful, even crippling, hormones and neurotransmitters in the body.
Ask any coroner whether this effect can be ascertained on a dead body. Ask any coroner whether the degree of muscle and joint pain can be detected in a dead body.
I went back again to Harbor-UCLA to participate in a joint USA-China study on neurasthenia, one of the other names by which the disease the CDC has so ineptly called CFS (Chronic Fatigue Syndrome - whose case definition, if your journalists or researchers had even bothered to read, shows that fatigue is merely one of a constellation of debilitating symptoms) is known. There I took the Minnesota Multiphasic Personality Index (MMPI) and interviewed extensively. Other researchers have found that the profile developed by the MMPI is markedly different for patients suffering from depression and those suffering from hypochondriasis. Patients diagnosed with CFIDS show profiles markedly different from both depressed patients and those suffering from hypochondriasis. Tell me, please, how many coroners can administer MMPIs to dead people.
Did the coroner in this case conduct tests for various thyroid functions? Measure the various CD levels? Interleukins? Check for the spuma virus detected only in CFIDS patient's cells (found by both US and Japanese research teams)? Check for the markers in urine found only in CFIDS patients (found by Australian research teams)? Did the coroner conduct IQ tests on the dead body? (Mine, like that of other CFIDS patients, has fallen almost 30 points since onset of CFIDS, thus documenting the cognitive dysfunction that is also hallmark of the disease.)
Please, ladies and gentlemen, if you are going to continue to display such gross negligence and callousness in your dealings with the seriously ill, then by all rights you should denigrate other disabling diseases and disorders. Here are a few to get you started; I'm sure your researchers can come up with more:
As for your "expert," Thomas Schwenk, medication and exercise may indeed work for people suffering from depression and/or a prolonged fatigue from a post-viral infection such as Epstein-Barr. What about all the known experts on CFIDS, however; did anyone bother to contact them? I have books and journals full of names of researchers all over the country. A simple Internet web search using "chronic fatigue syndrome" or "chronic fatigue immune dysfunction" would have brought your researchers hours and hours of literature references to research and contacts to pursue. It is painfully clear that NBC researchers didn't bother, nor did the coroner in the Curren case. Oh, and just for your researchers' edification, since they have so obviously failed to do the most basic research, Epstein-Barr Virus (EBV) is NOT CFIDS. In fact, many of us show no titers to EBV, meaning we never had it.
Then there is the matter of Dr. Kevorkian himself, the matter of the criteria he uses to assess the suitability of the desperate people who come to him. The press continues to state that he assists terminal patients despite the fact that he has repeatedly said that he addresses quality of life issues. As long as you continue to deride CFIDS and FM as being merely annoying, not the crippling, life-destroying diseases they are, this is a distinction that will continue to elude all of you.
Finally, someone please make some TelePrompTer notes for Mr. Hanson if he ever reports on this again. He may not have intended to make things worse by repeatedly mispronouncing "Fibromyalgia," but he did.
Maybe NBC should stay away from CFIDS unless, of course, your intent is to enrage an increasingly large segment of the viewing audience. If that is the case, you are doing a splendid job. Keep doing it and that audience may well start switching channels.
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