ME attracts headlines for all the wrong reasons, usually due to ignorance, but
also often due to manipulation of facts. A sad indictment of our times is the
story of Casey Fero. Here we link to the the story of Casey's short life. Let's
coordinate our efforts to gain funding for biomedical research to avoid stores
By Mary Schweitzer, Ph.D.:
This testimony was given to the CFSAC (The
Chronic Fatigue Syndrome Advisory Committee of the U.S. Department of Health and
Human Services) on Monday, September 12, 2005.
Feel free to pass this along (uncut).
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 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. 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. The family and Wisconsin CFS Association will honor Casey with a
blood and tissue bank for CFS/M.E. victims. We will pass the flyer around at the
end of this talk. [The flyer was posted to Co-Cure yesterday, and can be found
http://www.co-cure.org/flyer_WI.pdf . To contribute to the Casey Fero ME/CFS
Tissue and Blood Bank go to <www.wicfs-me.org>]
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.... Interesting, how he died so well, 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; Pat
testified before this Committee about a year and a half ago. You may also have
met his father, Bruce, and his older sister, Mikol Susan, when the Wisconsin
group hosted the October meetings of the American Association for Chronic
Pat has had CFS since before Casey was born.
She and Bruce sought diagnosis and treatment for Casey, but as he passed into
adulthood, he no longer had a doctor of his own. Even at the University of
Wisconsin, there were no doctors who “believed in” the disease or, for that
matter, really believed Casey was sick. Casey carved his own therapy out of
over-the-counter and mail-order supplements such as powdered whey protein and
Seeing the supplements, the coroner originally
told Pat that this would be their first “steroid” death. Even in death, the
first response was that it could not be CFS, because CFS is not a serious
Last Thursday, September 8, Pat received the
coroner’s report. The University of Wisconsin forensic pathologist found that:
**Casey died of myocarditis that is, his heart
was infected with disease. 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? Specialists on NMH said they knew of no
cases where someone died from that condition nor had there been reason to
suspect carditis was involved in NMH.
Using an ultra-sensitive type of
electrocardiogram, 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.
There is evidence that HHV-6 can infect the
heart. Other possible culprits include Lyme Disease,
mycoplasma, and Chlamydia.
In 2003, Arnold Peckerman, Benjamin Natelson
and others published their research finding that most CFS patients suffer from
cardiac abnormalities [“Abnormal Impedance Cardiography Predicts Symptom
Severity in Chronic Fatigue Syndrome,” in The American Journal of the Medical
Sciences 326:2 (2003): 55-60]. The cause was left to further studies, but Dr.
Paul Cheney has suggested viral infection. Clearly this research could lead to
an answer to Casey’s death, but it has no federal funding.
The harsh reality is that research on CFS,
viruses, and cardiac abnormalities is under-funded, ignored, and at times
outright dismissed by those charged with informing the public of the dangers of
However, if you turn to the Myalgic
Encephalomyelitis (M.E.) literature in Great Britain, 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 premature deaths from heart failure. Dr. Hooper has
long been studying the hypothesis that M.E. is caused by an enterovirus (such as
polio and coxsackie). 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 because in 1988
we rejected, instead of embracing, the robust research programs and existing
literature in the M.E. community? Had we built on these studies, instead of
squandering our time on measures of “fatigue” and a plethora of studies of CFS
as a “somaticizing” disorder, where might we be today? For the past twenty
years, had we been looking at this as a disease rather than a psychological
disorder, 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 her son
Casey was born. His entire life was lived under the shadow of this disease a
shadow of widespread ignorance.
The pathologist was shocked to find heart
What is the virus that the pathologists found?
HHV-6? Mycoplasma? An enterovirus? Cytomegalovirus? EBV? Something completely
new? Why is there no money for researchers studying these very questions?
We need 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 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
[effective] 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
Hold Casey’s memory high, 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.
To contribute to the Casey Fero ME/CFS Tissue
and Blood Bank go to www.wicfs-me.org or you may also send a check to:
||The Wisconsin CFS Association
||747 Lois Drive
Be sure to specify "CASEY'S FUND" on the