CFIDS EMERGENCY RELIEF SERVICES:
INTERVIEW WITH THE FOUNDER BY ELAINE KATZ

Monday, June 29, 1998

CFIDSERS, Inc. is a nonprofit, 501(c)3 organization that has evolved over the past six years. It was started to alleviate the suffering from financial emergencies primarily among people with CFIDS. At the time of its inception no other organization of its kind existed.

Informally, PWCs often refer to themselves as "CFIDSers." Thus the name CFIDS Emergency Relief Services, i.e. CFIDSERS (pronounced "see-fids-ers"), is a play on words.

The founder and president of CFIDSERS is Dr. Elaine S. Katz, herself totally disabled by CFIDS. Dr. Katz was a professor and writer/researcher at the University of Alabama, teaching interdisciplinary courses in the humanities, with a specialty in American folklore. In a subsequent career, she served as a member of the management team of Prudential Preferred.

Elaine Katz perceived the worst symptom of the devastating disease CFIDS to be the creeping poverty that many of its victims face during years of being disabled.

Believing herself fortunate to have enjoyed a fulfilling life before CFIDS rendered her totally disabled, Dr. Katz founded CFIDSERS because she saw no other avenues of relief for the heartbreaking poverty that CFIDS leaves in its wake for countless thousands of its victims. "It is unfair that CFIDS patients and their families all too often have to endure hunger, homelessness, pain, and medical deprivation."

Katz has sufficient resources to help only a few PWCs at a time. Thus this quotation appears on all CFIDS mailings:

"Compassion is not quantitative. Certainly it is true that behind every human being who cries out for help there may be a million or more equally entitled to attention. But this is the poorest of all reasons for not helping the person whose cries you hear." --Norman Cousins, "Human Options"--

As a financial services professional, Katz had known to plan for contingencies. Now she funds CFIDSERS largely out-of-pocket from the income from a disability plan she had owned for twelve years before needing. About six years ago, Katz began her philanthropic work, anonymously as possible, primarily in her local PWC community. By now, fully incorporated as a non-profit charity, CFIDSERS' helping hand extends across all of North America, and occasionally overseas.

Hundreds of grants large and small have been made to help individuals in need who are afflicted with this poorly recognized disease, but CFIDSERS PROVIDES FUNDING ONLY IF IT WILL SOLVE A FINITE PROBLEM. For example, one of the earliest "grants" was made prior to incorporation. Katz borrowed against her life insurance to buy a second hand van for totally disabled Ruthie, who was living alone on $400 a month in a Midwestern city.

Ever since, Ruthie has been able to get out with her motorized "scooter" and go to the grocery store as well as to those agencies that ironically insist people come to their offices in person (for food stamps, Medicaid, and the like) -- no matter how ill or disabled. A couple of times, Ruthie was even able to make the six-hour drive to visit her sister.

"Most victims of CFIDS need income streams," Katz declares, "but that would be impossible for any philanthropic organization." However, occasionally she comes a cross PWCs in financial crisis who have some prospect of receiving an income months away. As her particular project in observance of International CFIDS/M.E. Awareness, May 12, Katz annually chooses several PWCs to receive a monthly stipend for one year. Only when there is a strong chance of other money coming in down the road is this the right thing to do, for it would be cruel otherwise to leave someone high and dry when the stipend terminates.

"Mostly, what we do is pay for dental work (the need for which is a byproduct of the illness), keep homes from being foreclosed (but only when money is forthcoming to continue future payments), pay pharmacies for emergency prescriptions (so long as future resources will be in place to continue them), provide for drastically needed air conditioning (since most PWCs suffer from heat intolerance); occasionally pay veterinarian bills for beloved pets, send gift certificates for new clothes, buy a round of groceries, make someone's holidays less bleak, try to provide a shut-in or a home schooled child with a second hand computer, and facilitate dozens of other goods or services for which no other money can be found."

Having done networking for many years, at first as the result of being a local support group leader, Katz has evolved informally into a national resource person, communicating daily by phone or computer with hundreds of other PWCs and keeping up with organizations and the literature. "Sometimes money is not the only kind of help CFIDSERS can give. There are also referrals to make, a listening ear to extend, a shoulder to offer for crying on, and just plain reaching out to keep some PWCs from feeling isolated and forgotten about.

"This is how I learn about the worst cases of hardship," she points out. "Because of my own activism, I stumble upon the economic needs of PWCs all over the States, Canada, and beyond. I cannot and do not respond to appeals from perfect strangers. Since I can't afford an investigator, I have to know you before I make the decision to help you."

"And most of the time, you don't ask for my help. I see the need for it, or someone whom I completely trust points out a need to me, and then I may voluntarily do something about it if practicable. My organization is strictly a kind of 'fairy godparent fund.' CFIDSERS usually surprises its grant recipients with a check or with durable goods or with a desperately needed service.

"Until donations from the public become sufficient, CFIDSERS, Inc. cannot take formal applications from PWCs in need. We look forward to a future time, however, when we can advertise for applicants. We do have some wonderfully loyal contributors. But right now, the majority of the funding still comes out of my own pocket, which is not nearly as deep as I would like it to be."

CFIDS Emergency Relief Services is funded solely by individual contributions. There are no paid employees. The founder of CFIDSERS, Inc. pays for all operating expenses herself, so that all donated money goes directly toward helping PWCs in distress or, if so earmarked, to a growth fund to maintain this organization in perpetuity.

Contributions are tax deductible in accordance with the law. When people wish to make donations in lieu of other gifts to friends, the latter receive attractive acknowledgement cards telling them who (with their address) has made a generous contribution in their honor, to mark an event, or in someone's memory. The card itself includes information about both CFIDS the illness and CFIDSERS the organization.

People who send contributions may earmark them for a specific kind of need, for a specific geographical region, for the growth fund, etc. But with no restrictions placed on donations, the money is used directly for the highest priority hardship cases that have come to the president's attention. (Importantly to note, the legitimacy of all grant recipients is thoroughly checked out.)

One example would be Katie. Katie, who lives in South Carolina, spent her early childhood in an Eastern European concentration camp! As if that weren't enough, she has had CFIDS for many years. And as if that weren't enough, she has suffered unspeakably at the hands of a physically abusive husband. She was literally homeless when CFIDSERS first came to her aid. But this woman needs a lot more financial help.

Katie is just one of similarly desperate PWCs from one coast to the other. Cody in Manhattan is another case in point. Before he became too brain fogged to practice, he managed to obtain a law degree and even pass the bar exam. Right now, he's totally disabled by CFIDS. He's only in his early twenties and single. His mother is dead. Says Katz, "For reasons that defy my imagination, his remaining family refuses to have anything to do with him. Cody is out on the street. We talk by pay phone. I write to him in care of a Post Office."

Sally had been very ill with CFIDS for eleven years before something went wrong during hernia surgery. (Of course no one at her hospital even knew what CFIDS is.) She was living with a mother who herself suffers from both cancer and a heart condition. When she developed sepsis, Sally was forced to spend two years vegetating in a nursing home too far from her own home town to receive many visitors from either her family or the members of her own support group. Those who were already familiar with that particular nursing home had long ago nicknamed it "the black hell hole of Calcutta."

Sally, her hands and feet permanently drawn up, is back home now. She is still vegetating, only now in a hospital bed installed in her own room, but with no telephone, limited TV reception, and little to no intellectual stimulation. "One is astonished that she hasn't quite yet lost all her mental faculties, considering what she's been through," says Katz. "What CFIDSERS could do for Sally is limited only by one's pocketbook and imagination."

People wishing to donate to the Katie, Cody or Sally Funds, or to the discretionary fund, should send their contributions to CFIDS Emergency Relief Services, 4714 Northwood Lake Drive, East; Northport, AL 35473. All donations are acknowledged with a letter suitable for use at tax time.

Katz emphasizes: "There are no mass mailings or mass solicitations. No money is spent on anything but direct help to folks who have no other source of such help." Katz shrugs off kudos with the following observations:

"Founding and operating CFIDSERS has kept me off Prozac all these years with CFIDS. I have been able to use skills developed when I was healthy to do my part for the CFIDS community. The activities that I do are activities that I CAN do, activities that circumnavigate my particular physical and mental limitations.

"I cannot travel or attend hearings; I can't even walk into a bank to do business. I don't get out any more than I have to. But I can run CFIDSERS without having to adhere to a schedule, from an office in my house that is equipped with all the electronics I need -- computer, two-line phone, fax -- and with a computer program that helps me keep good financial records for a watchful IRS. I do all banking transactions by mail or phone.

"My mother was descended from seven generations of rabbis and married a rabbi who came from three. My darling mother (who just died, and whose favorite charity had been CFIDSERS) recently told me that my father, who had always privately wished that I had chosen the rabbinate, would have been so proud of my 'ministry.' That is all the recognition I will ever need. I created CFIDSERS for strictly selfish reasons. I have to feel that I can still make a difference, despite having to stop the world and get off."

Copyright (c) 1998 Elaine S. Katz

This article has been revised, but it was first published in the National CFIDS Foundation's National Forum, Vol. 1, No. 4 (Spring 1998), pp. 11-12, attributed in error to a different author.

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