Casey Fero stierf aan ME
Jan van Roijen - 16.09.2005 02:06
Zeer Geachte Volksvertegenwoordiger,
Enkele maanden geleden ontving ik van Pat Fero (ME patient),
met wie ik sinds jaren correspondeer, het hartbrekende bericht,
dat haar zoon Casey (ME patient) in zijn slaap was overleden.
Onlangs werd bekend, dat zijn dood een direct gevolg was van
ME/CFS. Door talloze chronische infekties was zijn hartspier
zodanig aangetast (myocarditis) dat zijn hart het uiteindelijk
begaf.
Casey Fero stierf aan ME
~~~~~~~~~~~~~~~~~~~~~~
Zeer Geachte Volksvertegenwoordiger,
Enkele maanden geleden ontving ik van Pat Fero (ME patient),
met wie ik sinds jaren correspondeer, het hartbrekende bericht,
dat haar zoon Casey (ME patient) in zijn slaap was overleden.
Onlangs werd bekend, dat zijn dood een direct gevolg was van
ME/CFS. Door talloze chronische infekties was zijn hartspier
zodanig aangetast (myocarditis) dat zijn hart het uiteindelijk
begaf.
Mary Schweitzer, Ph.D. legde op 12 september j.l. een
getuigenis af over deze zaak voor *The Chronic Fatigue
Syndrome Advisory Committee of the U.S. Department of Health
and Human Services*. (zie bijlage hieronder)
Voorafgaand aan deze verklaring voeg ik een fragment toe van
de bekende Engelse ME researcher Dr. E.G. Dowsett
(Honorary Consultant Microbiologist), uit in haar artikel "The late
effects of ME" van 31 januari 2003, te vinden op:
 http://www.ott.zynet.co.uk/polio/lincolnshire/library/dowsett/lateeffectsme.html
Moge degenen, die uit politieke overwegingen beweren, dat
ME/CFS een behandelbare ziekte is, die te genezen zou zijn met
Cognitieve Gedrags- en Graded Exercise Therapie, hun
gerechte straf niet ontlopen.
Jan van Roijen
acteur, 23 jaar ME patient
````````````````````````````
".....FINAL STAGE (1,2) After a variable interval, a multi-system
syndrome may develop, involving permanent damage to skeletal
or cardiac muscle and to other "end organs" such as the liver,
pancreas, endocrine glands and lymphoid tissues, signifying the
further development of a lengthy chronic, mainly neurological
condition with evidence of metabolic dysfunction in the brain
stem. Yet, stabilisation, albeit at a low level, can still be
achieved by appropriate management and support. The death
rate of 10% occurs almost entirely from end-organ damage
within this group (mainly from cardiac or pancreatic failure).
It has to be said that suicide in younger patients and in earlier
stages of the disability is related to the current climate of
disbelief, rejection of welfare support and loss of educational
and employment prospects. It is an additional and potentially
avoidable factor........"
Dr. E.G. Dowsett
``````````````````````````````
From: 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).
Mary Schweitzer.
````````````
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 at http://www.co-cure.org/flyer_WI.pdf . To contribute to
the Casey Fero ME/CFS Tissue and Blood Bank go to
]
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 Fatigue Syndrome.
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
Co-Q-10.
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 disease.
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 diseases.
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.
Why?
The pathologist was shocked to find heart damage.
Why?
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 senseless death?
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:
or you may also send a check to:
The Wisconsin CFS Association
747 Lois Drive
Sun Prairie, WI 53590
Be sure to specify "CASEY'S FUND" on the check.
Mary Schweitzer
mailto:  marymsch@comcast.net
~~~~~~~~~~
 E-Mail: j.van.roijen@chello.nl
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