*ME in the USA* -WPI Testimony for CFSAC

[Guest guest]

The CFSAC is the the *Chronic Fatigue Syndrome

Advisory Committee* (USA)

~jvR

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http://bit.ly/aBOVdz

Whittemore Institute's Notes:

Annette Whittemore's Testimony

for CFSAC Meeting May 10, 2010

Whittemore Institute

Testimony of Annette Whittemore

CFSAS

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, including:

Incline Village, Nevada

Lyndonville, New York

and Miami, Florida.

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 (ME).

ME 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 illness.

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 experimental treatments.

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 illness.

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 is this?

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

disease.

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 government.

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 (CFS).

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.

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.

[Guest guest]

I'm standing up applauding the Whittemore Family! I hope someone in power will

listen to them.

Anne

>

>

> The CFSAC is the the *Chronic Fatigue Syndrome

> Advisory Committee* (USA)

>

>

> ~jvR

>

> ``````

>

> http://bit.ly/aBOVdz