for Chronic Fatigue Syndrome Patients

IF CFS PREVENTS YOUR WORKING, you may be eligible for certain disability benefits. This term, "disability benefits" has many legal meanings, so you may need to make several inquiries (because of new and changing legislation) to find out what help is available to you. You may be eligible for certain benefits from your employer while you cannot work. Ask your personnel office or union representative for details.

LONG-TERM DISABILITY BENEFITS are provided by the Social Security Administration. To receive benefits under the Social Security Disability or Supplemental Security Income (SSI) programs, you must have physical or mental health problems (or a combination of problems), severe enough to prevent you from working in any regular, paying job for at least 12 months. You and your physician must provide information about your disability so that the Social Security Administration can decide whether you are eligible for these benefits.

FOR FURTHER INFORMATION about Social Security Benefits, call the 24-hour toll-free teleservice line, 1-800-772-1213, or the office of the Social Security Administration in your area. Most of the initial application can be done over the phone. Make it clear that because of extreme fatigue and weakness you cannot wait in line or sit very long in a chair. If there is a problem, ask to talk with the manager and explain that the fatigue will worsen your condition if you endure long periods of waiting or filling out forms. Ask that all necessary forms be sent to you in the mail.

WHEN COMPLETING THE FORMS, be honest and include specific information indicating that you cannot perform even the most sedentary type of work. Do not exaggerate the degree of impairment you experience, but do not minimize your limitations either. If it is true that you regularly need frequent naps, that you cannot sit or stand for long periods, or walk very far or lift more than a few pounds, include those details and any other information that clearly tells how disabled you are.

AFTER THE INITIAL APPLICATION is reviewed, it is very likely that you will receive a denial notice. Do not be discouraged as most initial applications are denied. It might be best to start looking for an attorney as soon as your application for benefits is denied. Within 60 days, file for a Reconsideration. Most likely, you also will be denied benefits at the reconsideration stage. Do not give up, only 15 percent of all disability claims are granted at this level. Instead, within 60 days, request a Hearing at which an Administrative Law Judge presides. Once your reconsideration is denied, it is very wise to consult an attorney, if you have not already done so.

ALTHOUGH ATTORNEY REPRESENTATION may not be absolutely essential in all cases, statistics have shown that people represented at the Hearing by a lawyer have been successful more often than people without representation. Disability attorneys in most states charge on a contingency basis, which means the fees are subtracted from the past-due benefits in a successful award. Social Security Regulations require that the attorney fees be approved by the Social Security Administration prior to payment. There is no fee if you lose, although you are obligated to pay any out-of-pocket expense incurred by the attorney representing you. Most CFS cases have been won at the hearing level.

A HEARING IS CONDUCTED BY the Office of Hearings and Appeals of the Social Security Administration. This is not the same agency that denies the initial application and the reconsideration. Much pre-hearing preparation, analysis, and evidence gathering go into adequate representation in a Social Security case. The earlier your attorney is able to start preparing, the better your chances of winning at your hearing. Although testimony is taken under oath, the Hearing is generally informal and is private. However, you may have witnesses on your behalf. There is a fourth stage, which is the Appeals Council Stage, and another 3 percent of cases are allowed at this level. A case lost at the Appeals Council can be taken to federal court.

THE NATIONAL ORGANIZATION FOR SOCIAL SECURITY CLAIMANTS' REPRESENTATIVES, 1-800-431-2804, may be contacted for a referral to an attorney who handles Social Security cases. You may wish to attend a local support group meeting to ask patients who have obtained Social Security Benefits about attorneys in your area who are knowledgeable about CFS.

This information is reprinted with permission of Thomas E. Bush, Attorney.


  1. "Social Security Disability and SSI Claims, Your Need for Representation"
  2. "Preparing for Your Social Security Disability or SSI Hearing"

Obtain by contacting:

National Organization of Social Security Claimants Representatives
19 E. Central Avenue
Pearl River, NY 10965


"Social Security Benefits - How to Get Them, How to Keep Them," by James Ross, Ross Publishing Company, 188 Forrester Road, Slippery Rock, PA 16057. $12.95 postage paid.

Information for this text is from the brochure, "SOCIAL SECURITY DISABILITY BENEFITS INFORMATION For Chronic Fatigue Syndrome Patients," adapted by Judy Basso for:

Chronic Fatigue Syndrome Association of Minnesota
P.O. Box 26639
Minneapolis, MN 55426
(952) 285-9067

This text prepared and provided by:

National Chronic Fatigue Syndrome and Fibromyalgia Association
P.O. Box 18426
Kansas City, MO, USA 64133
(816) 313-2000

(Text may be reproduced and/or distributed provided sources are credited.)

Web page design by Bill Jackson, 1996.

Any comments? Send them to Bill Jackson at

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