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From The CFIDS Association of America

Social Security Disability and CFIDS

Table of Contents

Are you eligible?
Five Important Rules for Winning Benefits
Finding an Attorney
If You Decide to Do it Yourself
After You Win
For Further Reading


If you work long enough at a job that is covered under the provisions of the Social Security Act and you become disabled, you are probably eligible for disability benefits. Chronic fatigue and immune dysfunction syndrome (CFIDS, also known as chronic fatigue syndrome and myalgic encephalomyelitis) can certainly be disabling.

The bureaucratic process of pursuing disability benefits for any medical condition can be difficult and time consuming. Benefits are routinely denied and many people who deserve benefits become so discouraged and intimidated that they simply give up.

Historically, CFIDS patients have had an especially difficult time getting their Social Security Disability benefits. To address this problem, in 1999 the Social Security Administration (SSA) published a ruling which stated that CFIDS can be disabling. This ruling, SSR 99-2p, provides an outline that CFIDS patients and doctors can use when developing their disability cases.

To be found disabled within SSA's strict guidelines, claimants must first show they have medical signs or laboratory findings reflective of their disability that have been documented by a doctor. To guide doctors who are not familiar with documenting disability in CFIDS patients, SSR 99-2p gives the following examples: swollen or tender lymph nodes, nonexudative pharyngitis, muscle tenderness, tender points, abnormal MRI brain scan, neurally mediated hypotension, elevated Epstein-Barr virus titers, persistent neurocognitive impairment, and other signs or lab findings that are consistent with the patient's medical record.

The CFIDS Association of America has other information that may help you and your doctor establish your SSA disability case. Please see "For Further Reading" below.

Are you Eligible? 

According to the Social Security Administration, a "disability" can be physical or emotional, or some combination of both. In order to win benefits, you must have a disability severe enough to keep you from working at any regular paying job full time for at least 12 consecutive months. The test for eligibility for Social Security Disability benefits is not whether you can go back to a job you've lost, nor is it whether you've been able to find a job recently. The test is whether you are physically and mentally capable of doing a job (any job) that is generally available in the workplace.

Five Important Rules for Winning Benefits

  1. Anyone may file for his or her own Social Security Disability benefits. But statistics clearly show that claimants who have professional representation concentrating in disability law are successful much more often than those who apply on their own. If you decide to hire an attorney, seek one who is familiar with CFIDS and who is well-respected in his/her profession. Some suggestions for hiring an attorney are listed in the next section.

    Most experienced attorneys will charge the same fee, probably up to 25% of your past due benefits only and usually there will be no fee if your claim is denied. The regular monthly payments you receive if you win your case are not subject to attorney fees. You will, however, be responsible (in most cases) for doctors' fees and costs of various tests involved in the preparation of the case. All expenses involved in preparing a case are tax-deductible for you, whether or not the case is successful.

    Be sure to keep your attorney informed of any communication you receive from Social Security. Do not answer it before checking with your attorney.
  2. Keep careful, written records of doctor visits. Follow your physician's and attorney's directions exactly. It will make you a better patient for your doctor and a better witness for your attorney.

    Keep a daily log of your symptoms and activities. Your testimony will be more credible if you can accurately describe your symptoms and the impairment caused by your illness. Keep written notes on low-grade fevers, muscle aches, dizziness, head and joint pain, and other symptoms. Also keep track of what you're able to do each day and how your cognitive abilities are affected. Ask family members and/or close friends to keep written notes about how your illness affects your activities and abilities.
  3. Find a doctor who has experience treating CFIDS patients. The degree of respect your doctor's testimony and documentation gets at a hearing is related to his or her expertise and standing in the medical community. Ask your physician to make reports in a simple and straightforward form.

    To help your doctor write an effective medical report, The CFIDS Association has commissioned the booklet "Disability Evaluation in a Nutshell," that contains a sample CFIDS patient's medical report.  To order, see "For Further Reading."
  4. Avoid self-serving doctors and attorneys who are "too busy" to answer all your questions. Some doctors perceive a benefit in explaining in their reports how much better you are doing under their care than you did under the care of other doctors. And some attorneys put Social Security Disability cases at the bottom of their priority list because the fees are relatively low. You deserve professional treatment from the professionals you hire. You have a right to "fire" them any time if they don't treat you properly.

    Always maintain your self-respect. That's not easy when you're having trouble getting people to believe you are suffering from a genuine disability. But you can never expect to get respect from other people, let alone the government and the legal system, if you don't respect yourself.

Finding an Attorney

When searching for a lawyer, start first by telling friends and relatives that you are looking for an attorney who is experienced, reliable and enthusiastic about representing clients with Social Security Disability claims. Local CFIDS support group leaders often know of attorneys who have represented other CFIDS patients in your community; contact the CFIDS Association for a list of support groups and contacts in your state.

You should also check with several lawyers who advertise their specific interest in Social Security Disability work. The National Organization for Social Security Claimants Representatives (NOSSCR) provides continuing education and other professional services to attorneys who have a strong interest and experience in the field. NOSSCR also provides referrals to member attorneys (call 800/431-2804) and has an extensive "Q&A" section on its web site at It may be helpful to ask attorney candidates if they belong to this professional organization.

Listen carefully to what the attorneys you interview tell you. Make your decision based on both your common sense and your intuition. Most experienced lawyers will outline the same basic scenario. It's a long, tough, often frustrating fight. Experience counts.

If You Decide to Do it Yourself

If you decide to apply for Social Security Disability benefits without using an attorney's professional services, don't give up when you're denied (most claims are denied twice with or without an attorney). After being denied twice, request a hearing. Many people drop out of the process before the hearing, thinking the odds are against them, but most successful cases are won at the appeals hearing. At the hearing, you will need medical documentation attesting to your disability. Be sure that your documentation and all your other paperwork is complete and in order.

The forms you must fill out are complicated. When you have questions, call the Social Security office for a complete explanation.

When you apply for Social Security Disability benefits, you are dealing with a government bureaucracy. It's not much different than dealing with the IRS or the state motor vehicles bureau. Maneuvering through the administrative bureaucracy may be time consuming and frustrating. So, even though you are entitled to do it yourself, obtaining professional counsel is recommended.

After You Win

If you are successful at winning your benefits, remember that your case may later be reviewed. SSA is supposed to review all cases in cycles ranging from six months to seven years, depending on the agency's opinion as to the likelihood of improvement in your condition. It's important to continue seeing a physician and keeping a journal of your symptoms because SSA may interpret a lapse in medical care as a sign that you've recovered.

If you get a notice stating that your case will be reviewed, be careful. Call your attorney and/or your doctor before responding. This notice may just be a brief form requesting information about your current medical treatment and whether you have worked at all since you began receiving disability benefits. Or it may trigger a thorough medical review - it is up to each state to decide how to handle reviews.

If you receive such a notice, you (or your attorney) should write a letter to the Social Security Administration immediately requesting that your benefits be continued. There is usually a 10-day limit involved, and you may be in danger of having your benefits terminated.

For Further Reading

The CFIDS Chronicle, published four times a year by The CFIDS Association of America

SSR 99-2p: Evaluating Cases Involving Chronic Fatigue Syndrome, Social Security's official policy on CFIDS claims. See or send a self-addressed envelope with current first class postage to The CFIDS Association of America, Attn: SSR 99-2p, P.O. Box 220398, Charlotte, NC 28222-0398.

Disability Workbook For Social Security Applicants by Douglas Smith, Atty.

Disability Evaluation in a Nutshell: A Three-Minute Guide to Writing Effective Medical Reports for CFS Claimants by Douglas Smith, Atty.

Disability Packet Compilation of articles by The CFIDS Association of America Call the Resource Line at 704-365-2343 for more information.

Contact the Association's Resource Line at 704 365-2343 for more information on these and other publications about chronic fatigue and immune dysfunction syndrome.

This brochure was published and distributed by The CFIDS Association of America (c)2000.  Some of this information is intended to help persons with CFIDS (PWCs) make informed decisions about the Social Security Disability process. For legal advice, please consult with an attorney.

For information on other educational materials available from The CFIDS Association of America, call 704 365-2343.

Rev. 6-00

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