From the WPI Facebook page-
Annette Whittemore's Testimony for CFSAC Meeting May 10, 2010
Whittemore Peterson Institute
Testimony of Annette Whittemore
April 25, 2010
The United States governmental entity responsible for alerting and
protecting the American public from threats to their health is the
Centers for Disease Control, better known as the CDC. The CDC's
mission is to collaborate to create the expertise, information, and
tools that people and communities need to protect their health –
through health promotion, prevention of disease, injury and
disability, and preparedness for new health threats.
Yet, one to four million Americans still suffer from a poorly
understood, debilitating disease which was first identified in the
United States in three separate recorded outbreaks over 25 years ago,
Incline Village, Nevada
Lyndonville, New York and
The individuals who became ill that year came from various economic
classes, different age groups, including children and adults and
affected people in a small rural town, a large lakeside community and
a huge metropolitan area. The individuals in those outbreaks all
exhibited the same complex symptoms, yet none of the patients were
examined by the government employees who were sent to investigate.
The doctors who alerted the CDC were not told of the other communities
in the United States experiencing the same phenomenon. Despite the
serious concerns about the severity of the patient's symptoms and
their rapid decent into disability, the CDC refused to investigate
further. The CDC concluded that this was a new form of EBV mono. They
convened a meeting, in which they decided to call this illness
"chronic fatigue syndrome" rather than adopt the name that was being
used in the UK: myalgic encephalomyelitis (M.E.). M.E. at that time
was already a well characterized infectious neurological disease
causing a similar complex illness.
Thus began a twenty five year battle between patients and doctors who
fully realized the severity of this illness and a government that has
yet to commit an appropriate level of financial resources to aid the
discovery process necessary to help individuals with this disease. Not
only has the lack of adequate resources been a major road block to
discovery, but the CFS scientific review committees are currently
ill-equipped to review many of the biologically complex scientific
grant requests. Attempts to engage in biological research by basic
researchers from virology and retro virology have generally been
turned down in favor of studies aligned with a psychological theory of
Years of misdirected research have resulted in a lack of a medical
specialty for this group of patients to rely on for expert care.
Doctors have been left without adequate knowledge and the tools to
effectively care for their patients. The sick have been turned away by
major medical centers, ignored by government, and their claims denied
by insurance companies who refuse to pay for diagnostic tests and
How could this happen to such a large group of sick people in this day
and age of modern medical technology? Who could possibly benefit by
this inhumane treatment of sick human beings?
My husband is fond of the quote made popular in the Watergate era:
"follow the money". His take on it is more specific: When something
doesn't seem right, "follow the money".
So if one follows the money in this case, we can perhaps begin to
unravel the mystery of this crime against humanity. We know that when
this disease was first reported to our governmental authorities,
another more deadly illness had recently been identified, HIV-AIDS.
Our nation was debating how to approach this new "gay man's disease",
until it struck a young child and a famous athlete, neither who were
gay. Countries around the world were struggling to meet the heavy
demands of HIV, when myalgic encephalomyelitis began to take its
equally heavy toll on the lives of the innocent.
But this disease was a disease that apparently could be ignored. It
seemed to impact mainly woman. There was no immediate organ damage
that could be detected. It did not kill the afflicted rapidly enough;
it only caused a profound disability that could last a life time.
However, a life time of disability requires a life time of disability
payments and huge medical bills; something no government or private
health insurance provider wants to be responsible for. The only way to
avoid medical and disability payments for the sick is to claim the
illness is due to a psychological disturbance or mass hysteria, blame
the patient for their illness and offer cheap psychological treatment
and exercise therapy. As long as no one discovers the true cause of
the disease, these entities are safe from any expectation of actual
medical intervention. A physical disease may remain in the psychiatric
domain if it is called a psychosomatic illness; "meaning a disorder in
which mental factors play a significant role in the development,
expression, or resolution of a physical illness."
Despite years of private research and thousands of papers describing
the physical deficits found in these patients with this illness, our
government and medical entities continue to ignore the evidence in
favor of those who espouse a simplistic psychological theory of
But those who stand to gain by misdirecting research funding can not
stop the truth from being revealed. What greater evidence is required
to support the request for responsible action than the finding of a
new human retrovirus replicating in this population of patients?
Knowing the significance of this discovery, why has the US government
not asked CFS patients to stop donating blood until the cause of this
disease is better understood?
Prostate cancer and XMRV research has been made a priority at the
National Cancer Institute and major universities as evidenced by the
publication of new findings. Yet, there has been no such commitment by
those at the National Institute of Allergy and Infectious Disease. Why
Are we to blindly and meekly accept that those who suffer from XMRV
(who have been inappropriately branded as having a fatiguing illness
called "CFS") are undeserving of the same medical care afforded others
infected with a retrovirus?
I believe this is not time to end the CFSAC but rather a time for the
CFSAC to exhibit its commitment by sending its strongest
recommendations to the Secretary of Health and following those
recommendations with actions:
• Educate the research and medical communities about the number of
individuals impacted and the severity of this disease. Recommend that
the CDC define ME by the immunological and neurological abnormalities
that exist, the many co-infections that are frequently found and the
physical complications of this long term illness. It is time to agree
on a proper name for this disease and to reflect the most current
scientific knowledge in the definition of this disease.
• Seek congressionally mandated research dollars that more closely
match the number of individuals impacted by the disease and the
severity of the illness. Millions of Americans are ill with ME and yet
the NIH allocates a mere $1.00 to $4.00 per year per person. The loss
in economic dollars is conservatively estimated to be $9 billion per
year. With that kind of economic loss to our society, why isn't this
disease funded at the level of hepatitis C which is currently at $93
million a year? Patients diagnosed with ME also suffer from
inflammatory bowel disease, cognitive impairment, fibromyalgia,
anemia, gall bladder disease, chronic Lyme disease, sleep disorders,
chronic pain, depression, hormonal dysregulation, frequent viral
infections, heart disease, and cancer. Yet these sick Americans are
forced to seek unproven medical treatments for symptomatic relief due
to the lack of scientific understanding of the underlying immune
deficiency that is driving this disease.
• Request that research be conducted on XMRV in infectious disease by
the NIAID and outside researchers to continue the valuable work begun
at the WPI. The human retro virus, XMRV, has been found by WPI
researchers in diverse disease populations, including cancer, autism,
fibromyalgia, gulf war illness and ME, in men, woman and children. Yet
four of WPI's most recent grants were denied funding on the basis that
not enough is known about XMRV to warrant further investigations.
• Create and fund Centers of Excellence in neuroimmune diseases to
care for patients with complex disorders caused by infectious agents.
Scientific medical criteria should be developed that hold these
Centers to standards of performance that include timelines and
effectively measure demonstrated outcomes. All such Centers should be
interconnected to provide medical consistency in care. They should
include research, clinical care and medical education components from
classroom lectures, to residencies and fellowships in neuroimmune
• Request a congressional hearing to determine why this disease has
been so poorly managed by the CDC and NIH, in order to assure the
American public that the failure to recognize a serious threat to the
nation's health will not be repeated.
There is no question that the CFSAC, as defined by its charter, can be
an important avenue to a meaningful discourse between those who care
about M.E. and those who are capable of initiating action from within
The question is: Has the CFSAC achieved the goals stated in their charter?
The charter states its purpose …..as established to provide
science-based advice and recommendations to the Secretary of Health
and Human Services and the Assistant Secretary for Health on a broad
range of issues and topics pertaining to chronic fatigue syndrome
Is this goal being aggressively pursued? Is scientific evidence being
reported to the Secretary of Health? What actions have been taken by
the Secretary of Health that would provide evidence that this
information is being acted upon?
The Function of the committee is stated below:
The Committee shall advise and make recommendations to the Secretary,
through the Assistant Secretary for Health, on a broad range of topics
including: (1) the current state of knowledge and research about the
epidemiology and risk factors relating to chronic fatigue syndrome,
and identifying potential opportunities in these areas; (2) current
and proposed diagnosis and treatment methods for chronic fatigue
syndrome; and (3) development and implementation of programs to inform
the public, health care professionals, and the biomedical, academic
and research communities about chronic fatigue syndrome advances.
The WPI took the earlier recommendations of this committee seriously.
In fact, we built our Institute on the premise that this disease and
others very similar to it, deserves "Centers of Excellence" that can
bring answers to patients and doctors, in the same manner as multiple
sclerosis and muscular dystrophy have successfully done. We believe
that to find answers to this complex disease we must combine the
translational efforts of basic and clinical researchers working in
collaboration with knowledgeable physicians. This is the dream of the
WPI: to bring discovery to a disease which has impacted millions of
lives, to develop effective treatments and to one day provide
preventative measures that will stop the spread of the disease.
This is not something that we can afford to do alone. If this
committee will confirm that it is more than a sounding board for
frustrated patients and doctors and that it can effectuate the
necessary changes in this field, then the WPI fully supports the
renewal of its charter.
Martin Luther King, Jr. once said, "The ultimate measure of a man is
not where he stands in moments of comfort and convenience, but where
he stands at times of challenge and controversy". I believe that
courage is the combination of knowing the right thing to do and then
doing it. Please show us you have the courage to make this happen.
Thank you for your time and attention.