Issues: A Statement
To the first meeting of the Chronic Fatigue Syndrome Coordinating Committee
Thank you for the opportunity to speak on behalf of people with chronic
fatigue and immune dysfunction syndrome, also known as myalgic encephalomyelitis.
I represent WECAN,
Inc., an online nonprofit organization with 150 members, dedicated
to providing information and advocacy for people with CFIDS/M.E. Here
are some priorities which our members would like to share with you regarding
your historic mission.
We would like to communicate a strong sense of urgency with regard to
research priorities, diagnosis and treatment of all citizens with this
disease, disability income, and caregiving. There are people out there
who need help now -- not in three or five years when a marker will make
it more convenient.
2. THE NAME.
We really need the name changed. Chronic Fatigue Syndrome is too easily
confused with the general feeling of fatigue. It does not communicate
the range and severity of the symptoms, nor does it communicate the neurological,
endocrine, metabolic, and immunological aspects of the condition. Frankly,
we also need a name that is not fodder for Jay Leno jokes on the Tonight
Show (as occurred last week).
3. CHILDREN AND ADOLESCENTS.
A year lost in the life of a student is irretrievable. WECAN wishes to
add our support to those who are here to advocate for the needs of this
critical group of patients.
4. The Issue of CONTAGION.
While no causative agent has yet been found, there is some evidence of
contagion at some stage in the lifecycle of Chronic Fatigue Syndrome.
We believe that until we can definitely prove that the disease is not
contagious in any way, the prudent response of government agencies would
be to take the precautions necessary if it turns out to be contagious.
5. INCOME and SOCIAL SECURITY DISABILITY.
The application process for SSDI takes too long. Precisely what IS a person
supposed to live on if he/she is honest and genuinely unable to work?
What do you do for two, three, four years?
Understand that when a person collapses from this disease, they are
horribly ill. In many ways, "disability" is a misnomer for the situation:
we are dealing with people who are invalids. They were not injured on
the job; they are terribly, terribly sick. We need shortcuts through the
red tape to deal with the reality of being a productive individual one
day, and an invalid the next. One of the major symptoms of CFIDS is severe
cognitive dysfunction. The phone calls, appointments, multi-page application
forms, multiple visits to doctors, required in the SSDI application process
is as impossible for some people with CFIDS as requiring someone who is
wheelchair-bound to make it up two flights of stairs for a required appointment.
We need accomodations for our cognitive disabilities.
6. INCOME and PRIVATE LTD INSURANCE.
Although private insurance is technically regulated by states, our hands
are tied because of the ERISA law. A patient cannot sue a company for
breach of contract and receive anythin g more than the sum they should
have received in the first place -- no matter how deliberately the insurance
company acted to defraud them, or what extra losses they have suffered
because they could not pay their bills wh en their income stopped. No
lawyer will take these cases on because there are no damages to share;
few patients can afford the process.
It is a perverse economic incentive: the market rewards the insurance
company that cheats. The problem is a federal law, ERISA; the recourse
must therefore be federal. The purpose of ERISA was to protect pension
plans from corporate raiders; the law must be amended to protect clients
from current uni ntended abuses.
Most patients with active CFIDS are not "disabled" -- they are invalids.
They need care -- some need housekeeping care; others need more formal
nursing care. In this fragmented society, far too many hav e no family
to care for them -- which means that we, as the richest society in the
world, as a democracy that believes in the worth of each individual, MUST
step in and see that they do not suffer in their isolation.
Those families who are able to remain intact find themselves in need
of social services to hold them together in this time of severe stress
and crisis. The services are not there; we need them if we value the family
8. DIAGNOSIS and TREATMENT.
We need a clear, streamlined set of instructions for a first-pass diagnosis
for HMOs, family physicians, public health workers, and emergency room
workers -- and they need that information now. HMOs in particular must
be instructed to permit the necessary testing to rule out other diseases
with similar symptoms. Medical professionals also need instructions for
treating and caring for patients after diagnosis. Perhaps Public Health
could identify or establish regional regional centers that can specialize
in the diagnosis and treatment of CFIDS for referrals from front-line
We need attention paid to those patients with CFIDS and fibromyalgia
who suffer terrible, unrelieved pain. Finally, we need diagnostics for
slow onset so people can be diagnosed and treated before they collapse,
9. HEALTHCARE AFTER DIAGNOSIS.
Many of us have been dropped by our doctors after diagnosis -- in part
because the illness is so complex, in part because they are required to
fill out so many forms for social security and private insurance companies.
I cannot tell you how difficult it can be to find a competent doctor willing
to take on a CFIDS patient and all the paperwork that goes with us.
Many patients with CFIDS were not diagnosed until AFTER they had lost
their jobs, and hence lost their private health insurance completely.
What do they do?
What about the patients from poor communities who don't ever see a doctor
regularly in the first place, who go to emergency rooms or community clinics
for acute care? How can we reach and treat them? MEDICARE and MEDICAID
take a while for approval and, unfortunately, many specialists refuse
to take either. Many patients are therefore in worse shape than they need
to be because lack of funding renders appropriate health care inaccessible.
As a result of these logistical and institutional problems, individuals
with CFIDS and their families are suffering needlessly. We are losing
productive individuals to illness, penury - and death. Every student isola
ted with this disease represents a loss to our nation's future. Every
parent disabled represents a strain on already-overburdened families in
our society. Each year CFIDS goes ignored, the nation suffers at least
8.3 bil lion dollars in lost productivity because so many adults in their
prime are rendered disabled, or invalids, through this disease. That translates
into at least 2.7 billion dollars in lost income taxes every year. How
p enny wise and pound foolish to limit public funding of CFIDS research
to less than $20 million annually.
At least a half a million Americans and their families are counting
on you to cut through the red tape and take action now. You have a unique
historic opportunity to break through the divisions within our society
in the name of a common goal, and we are all very grateful to you for
taking on this task. We wish you Godspeed in your work, and thank you.
Mary McKinney Schweitzer, Ph.D.
Associate Professor of History
Villanova University, Villanova, PA
(on indefinite medical leave with CFIDS since January 1995)
Co-Chair, WECAN, Inc. - The Worldwide Electronic CFIDS/M.E. Action Network
P.O. Box 805, Hockessin, DE 19707-0805 (302) 239-0806
Listowner, Sasyfras; WECAN; WECAN-Chat
Director, CFIDS Assoc. of Delaware
Member, CFIDS Assoc. of America
© Mary Schweitzer, 1997
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