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Testimony before the
Chronic Fatigue Syndrome Coordinating Committee (CFSCC) of the
U.S. Department of Health and Human Services
Washington, DC
September 12, 2005

Mary M. Schweitzer, Ph.D.

On July 4, 2005, sometime between 2:30 am when his mother kissed him good night, and 6:30 am when his father came downstairs, Casey Fero died in his sleep. His heart simply stopped.

Casey Fero was 23.

Casey was a charming, friendly tow-headed kid with blue-green eyes. He was first diagnosed with CFS at the age of 9, then again at 15. He was plagued by headaches, cognitive difficulties, muscle weakness, and exhaustion. In addition to the symptoms of a serious illness, he had to endure doctors who did not “believe” he was “really” sick, and teachers who saw in him only a shirker. By the end of his short life, however, he was happy. He had just completed two years of community college and was looking forward to beginning courses at the University of Wisconsin, and he had acquired a summer job.

He had many friends, who came to his home for days after he slipped away to mourn the loss together. It was his friends who decided that he would have liked a tissue and blood bank as his memorial, and I will distribute flyers about that in a minute.

In his mother’s words, “Casey had bull dog determination. In his mind, he had overcome all illness and if he just worked harder he could do anything. … He died … with so much enthusiasm to live.”

Most people in this room are acquainted with Casey’s mother, Pat Fero, President of the Wisconsin CFS Association; you may also have met his father, Bruce, when the Wisconsin group hosted the October meetings of the American Association for Chronic Fatigue Syndrome. Pat testified before this Committee about a year and a half ago.

Pat has had CFS since before Casey was born. She has also been diagnosed with neurally mediated hypotension; Casey did not want to undergo the tilt table test. Without a doctor of his own – because even at the University of Wisconsin, there were no doctors who “believed in” the disease – Casey carved his own therapy out of over-the-counter and mail-order supplements such as ImmunePro and Co-Q-10.

Seeing the supplements, the coroner originally told Pat that this would be their first “steroid” death. That turned out to be mistaken (of course) – but it shows, once again, that nobody really believes that “CFS” is a serious disease.

Last Thursday, September 8, Pat received the coroner’s report. The University of Washington forensic pathologist found that Casey died of myocarditis – that is, he had heart damage. There was inflammation, and the tissue was full of viral infection. Casey also had old fibrosis, indicating that the viral infection was not of a new onset. The pathologist was “shocked” at this finding.

Casey Fero died of Chronic Fatigue Syndrome.

Why?

I turned to the literature for an answer.

Casey’s mother has NMH and passed out during the tile table test. But there is nothing in the literature about NMH or POTS about sudden death, and the researchers I asked said they knew of no cases where someone died of those conditions. There are cases where a patient’s heart stops during the tilt table test – to my knowledge, all were revived. That is why the physician must be with the patient at all times during the test. And yet, Casey was lying down on a sofa. From what I know about NMH/POTS, if a heart stoppage were to occur, it would be while standing up.

There is a small body of literature in the United States on the possibility of cardiac complications from CFS.

Using an ultra-sensitive type of electrocardiogram [Halter monitor, making note of even the slightest abnormalities], Dr. A. Martin Lerner of Wayne State University has found evidence that EBV and cytomegaloviruses in CFS patients has caused heart damage. I do not know whether this research has been replicated, but under the circumstances, it takes on a new importance.

More recently, Peckerman et al published an article “Abnormal Impedance Cardiography Predicts Symptom Severity in Chronic Fatigue Syndrome,” in The American Journal of the Medical Sciences 326:2 (2003): 55-60. Unfortunately, Peckerman did not speculate on what would cause the abnormal impedance cardiography.

However, if you turn to the M.E. literature in the U.K., there is evidence of deaths in both adults and teenagers from sudden heart stoppage. Ramsay wrote about such cases, and in correspondence with Dr. Malcolm Hooper I was informed that he, too, was aware of sudden deaths in adolescents because of heart stoppage. Dr. Hooper has long been studying the hypothesis that M.E. is caused by an enterovirus (such as polio and coxsackie), because the illness behaves like enteroviruses do – it hides out and then pounces. There is no comparable research on enteroviruses in the United States (unless you count the sparse literature on post-polio syndrome).

Is this the price we have paid for detouring into CFS instead of accepting – no, welcoming – the robust research programs and existing literature in the M.E. community? If we had built on these studies, instead of squandering our time on measure of “fatigue” and a plethora of studies seeking “somaticization”, where might we be today? Had we been looking at this as a disease, instead of a psychological disorder, twenty years ago, would we now know enough to have prevented Casey’s death?

And if we hadn’t hidden what we already know from the public, would Casey have had a doctor of his own, perhaps even one that would have looked into the condition of his heart?

Pat Fero came down with CFS before Casey was born. His entire life was lived under the shadow of this disease – a shadow of widespread ignorance.

Why?

The pathologist was shocked to find heart damage. Why?

What is the virus that the pathologists found? HHV-6? Lyme? An enterovirus? Cytomegalovirus? EBV? Something completely new? Why is there no money for researchers studying these very questions?

We need is the public to be told – NOW – that there is a serious disease out there, and that nearly a million people in the United States have it. They need to be told of the uncertainty about cause, prognosis, and cure. They need to be told of what they should be tested for to rule out other diseases. And they need to know that patients die.

Two months after Casey’s tragic, untimely death, most primary care physicians know little more about the disease than they did on the day Casey was born. That is criminal.

One year after this committee sent a list of suggestions (as is its task), to the Secretary of the DHHS, there has been no response. That is also criminal.

What does it take to impart a sense of urgency to this task?

Does it take the tragedy of a young man’s senseless death?

Carry Casey’s life and death like a banner. Take him to Congress, to the press, to the appropriate medical specialties. Let this be a turning point. Casey Fero died too young. Do not let his death be in vain.


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