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The Social Security Administration's disability claims process has been a source of frustration for many persons with CFIDS (PWCs). The documentation process is complicated by the lack of a laboratory test for the illness and by the variety and variability of symptoms experienced by PWCs.

In an effort to help PWCs understand the process and the rules under which SSA adjudicators review disability claims, the SSA provided The CFIDS Association of America with the following information. This is more detailed than SSA Publication 64- 063 for health professionals on providing medical evidence to support a disability claim based on chronic fatigue syndrome. That publication can be viewed on the Internet at http://www.ssa.gov/odhome/cfsfacts.htm .

Determination of disability

Under Social Security law, an individual is considered disabled if he or she is:

• unable to do any substantial gainful work activity because of a medical condition (or conditions) that has lasted or can be expected to last for at least 12 months, or that is expected to result in death;
• or, in the case of an individual under the age of 18, if he or she suffers from any medically determinable physical or mental impairment that causes marked and severe functional limitations.

The medical condition(s) must be shown to exist by means of medically acceptable clinical and laboratory findings. Under the law, symptoms alone cannot be the basis for a finding of disability, although the effects of symptoms may be an important factor in our decision regarding whether a person is disabled.

Once a medically determinable impairment has been established, and it is one which could reasonably be expected to cause pain, fatigue or other symptoms, then the symptoms must be considered both in evaluating the severity of the impairment and in assessing the individual's functional capabilities in the subsequent steps of the disability evaluation process.

SSA uses a five-step sequential evaluation process to determine disability. Step one is simply whether or not the individual is working at a substantial level. Step two determines whether the individual's impairment is severe or not severe. Step three moves to the medical evaluation criteria known as the Listing of Impairments, which describes impairments for each of the body systems that are presumed severe enough to be disabling, in the absence of work activity. If an individual's clinical signs, symptoms and laboratory findings are the same as or equivalent in severity to those specified in a given listing, the individual is found disabled on medical grounds alone at step three.

If the individual has a severe impairment but it does not meet or equal the severity of a listed impairment, further evaluation specifically addressing the individual's functional capabilities must be done. This is known as the residual functional capacity (RFC) assessment. It determines what the person can still do despite the functional limitations imposed by his or her impairment, including symptoms, and is used to decide if the individual could be expected to return to past work.

If past work is precluded based upon the RFC, a determination is made regarding the individual's ability to perform other work within his of her functional capacity, given the additional factors of age, education and past work experience. If other work is also precluded under this determination, then disability is established.

For a child under the age of 18, the evaluation process stops at the third step and assesses whether a child's impairment(s) causes marked and severe functional limitations.

In order to perform the complete evaluation process, SSA must have detailed medical and non-medical information which presents a comprehensive picture of a person's medical condition and functional limitations, both physical and mental, over a period of time sufficient to determine disability under the law.

Medical Evidence:

Longitudinal medical records (i.e. records describing the illness over time) are very important for disability claims evaluation under Social Security and are especially significant in assessing the presence and severity of CFS. Every effort should be made to provide as much detailed longitudinal information as possible, either with photocopies of examination and treatment records or in a narrative report (or both).

Ideally, a medical report should include the following elements:

• Medical history;
• Clinical findings (such as the results of physical and/or mental examinations);
• Laboratory findings (such as the results of blood tests or psychometric testing);
• Diagnosis;
• Treatment prescribed with reports of response and prognosis; and
• A statement by the treatment source detailing what the patient can still do despite the effects of the impairment.

Medical history

The medical history should discuss in detail the complaint alleged as the reason for disability. The history should include:

• A complete description of the problem; How long the problem has been present;
• If the condition is episodic in character or tends to exacerbate and remit over time (If this is the case, the dates of episodes, known precipitating factors, and the state of health and ability to function of the patient between episodes should be provided);
• Any known factors that worsen the condition or that alleviate it;
• Any prescribed treatment (including medications listed by name and dosage), response to treatment, compliance with treatment, side effects of treatment; and
• A detailed description of how the impairment limits the patient's ability to function in the activities of daily living.

Signs and symptoms

The signs and symptoms of CFS which should be addressed may include: sore throat, tender cervical or axillary lymph nodes, muscle pain, multi-joint pain without swelling or inflammation, generalized headaches or new origin, unrefreshing sleep, post-exertional malaise, impaired memory or concentration, chronic intermittent fever, muscle wasting, neurological deficits, difficulties with vision and other mental abnormalities.

Laboratory findings

There are no specific laboratory findings that document CFS, but longitudinal studies in the record may include the following tests:

• Complete blood count with leukocyte differential;
• Erythrocyte sedimentation rate;
• Thyroid-stimulating hormone;
• Urinalysis;
• Serum levels of alanine aminotransferase, total protein, albumin, globulin, alkaline phosphates, calcium, phosphorus, glucose, blood urea nitrogen, electrolytes and creatinine.

Additional tests to exclude other diagnoses may also be in the record.

The results of tilt-table testing to evaluate neurally mediated hypotension may also be included; these results may be abnormal in persons with CFS.

Information about function

Statements/opinions from the treating source about the impact of the individual's impairment on his/her ability to function in day-to-day activities of living are of great value to SSA in making its determination as to whether or not the individual is disabled. In this regard, any information the treatment source is able to provide contrasting the patient's medical condition and functional capacities since the onset of CFS with the patient's status prior to CFS is meaningful to SSA's evaluation.

SSA is also interested in information regarding how long the impairment might be expected to limit the claimant's ability to function, the effects of any treatment, including side effects, and precise observations regarding how well the claimant is presently able to function. A simple statement by the physician that the individual is or is not disabled is not helpful since that is a decision that SSA must make in accordance with law and regulations based on the medical and other evidence it has received.

Important non-medical information

Information other than reports from medical sources helps SSA to assess an individual's ability to function on a day-to-day basis and to fully depict the individual's capacities over a period of time, thus helping to establish a longitudinal record. Such non-medical evidence includes, but is not limited to:

Information from neighbors, friends, relatives and/or clergy;

• Statements from prior employers about the claimant's impairment and the effects of the impairment on the person's functioning;
• Any other relevant statements, such as ones made by the claimant's spouse or other family members, to medical sources during the course of examination or treatment, or to SSA representatives during interviews, on applications and in letters;
• Statements of other practitioners, e.g. nurse practitioners, physicians' assistants, naturopaths and chiropractors; and
• The individual's own record (such as a diary, journal or notes) or his/her impairment and its impact on daily functioning.

By sharing this information directly with persons with CFIDS, The CFIDS Association of America hopes PWCs and their doctors will be able to better prepare disability claims and experience more success at winning their claims at their first hearing. For more information on Social Security disability claims and long-term disability insurance, see the educational materials at http://www.cfids.org/edumatls.html .

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The CFIDS Association of America

800/442-3437 - fax: 704/365-2343 - e-mail: cfids@cfids.org

For more information about The CFIDS Association of America, call 800/442-3437, write: The CFIDS Association of America, PO Box 220398, Charlotte NC 28222-0398, USA, or visit our site on the World Wide Web: http://www.cfids.org.