Presentation to the first meeting of the
Chronic Fatigue Syndrome Coordinating Committee (CFSCC)of the
Department of Health and Human Services (DHHS)
The Federal Government of the United States of America
May 29, 1997
Mary M. Schweitzer, Ph.D.
Chair, Steering Commmittee
WECAN - The Worldwide Electronic CFIDS/M.E. Action Network
[WECAN existed from 1996-1999]
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 my members who like to share with you regarding your historic mission.
1. URGENCY. 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 need the name changed now. 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 are 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 anything 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 when 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 unintended abuses.
7. CARETAKING. 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 have 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 unit.
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 to 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 physicians. 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, not after.
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 can take years 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 to them.
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 isolated 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 billion 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 penny 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., Co-Chair, WECAN, Inc.
Go to the CFIDS/M.E. Information Page
Mary Schweitzer's Essays on CFIDS/M.E.
Mary Schweitzer's Testimony to CFSAC and CFSCC