Disability and Chronic Fatigue Syndrome
The Social Security Administration (SSA) issued policy interpretation ruling SSR 99-2p to state and clarify their policy for evaluating disability in cases of chronic fatigue syndrome (CFS). We encourage you to see the full document at the Social Security Administration's website but have provided an overview of the policy. Although this information was summarized in 1999, it still constitutes the working guidelines followed by the SSA.
Social Security Ruling 99-2p states that CFS can be a disabling condition and people who meet SSA’s criteria for disability are eligible for benefits. SSA’s general definition of disability is: "the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment (or combination of impairments) which … has lasted or can be expected to last for a continuous period of not less than 12 months." However, the agency notes that "disability may not be established on the basis of an individual’s statement of symptoms alone." Importantly, the SSA states that "CFS constitutes a medically determinable impairment when accompanied by medical signs or laboratory findings."
Understanding Policy SSR 99-2p if you are a CFS Patient or CFS Healthcare Provider
The Social Security Administration specifies that CFS patients can obtain disability when medical signs and laboratory findings establish a medically determinable impairment. The SSA document does not follow diagnostic criteria for CFS. This means that the medical signs and laboratory findings listed as examples for documenting a medical impairment may not be needed for diagnosis of CFS. It also means that:
- If a CFS patient has some of the medical signs or laboratory findings listed in Ruling SSR 99-2p, then these results can be used to support disability claims, and
- If a CFS patient does not have the listed examples under the SSA categories of medical signs and laboratory findings, then other measurable findings such as sleep abnormalities, diminished physical or cognitive capabilities, can be used to support documentation of the illness.
- Once a medically determinable impairment is documented, patients need to show that they are functionally impaired for not less than 12 months.
NOTE: Policy SSR 99-2p provides examples of medical signs and laboratory findings but importantly notes that these examples ARE NOT all-inclusive. Listed below are the examples provided by SSA. However, CFS patients are encouraged to speak to their healthcare provider about CFS and disability as these examples do not include every medical symptom or laboratory finding. Disability is best determined on an individual case basis and on the medical, clinical, and laboratory records of the patient.
For CFS patients the process of applying for disability can be long and frustrating. In some cases a patient or family might want get an independent third party representative to help guide them through the process. However, working closely with your healthcare provider is still the best way to file a disability claim.
Examples of Medical Signs that Establish the Existence of a Medically Determinable Impairment in Some Cases of CFS
For purposes of Social Security disability evaluation, one or more of the following medical signs clinically documented over a period of at least 6 consecutive months establishes the existence of a medically determinable impairment for some individuals with CFS:
- Palpably swollen or tender lymph nodes on physical examination
- Nonexudative pharyngitis
- Persistent, reproducible muscle tenderness on repeated examinations
- Any other medical signs consistent with medically accepted clinical practice and consistent with the other evidence in the case record.
Examples of Laboratory Findings that Establish the Existence of a Medically Determinable Impairment in Some Cases of CFS
At this time, there are no specific laboratory findings that are widely accepted as being associated with CFS. However, the absence of a definitive test does not preclude reliance upon certain laboratory findings to establish the existence of a medically determinable impairment in some persons with CFS.
- Any laboratory findings that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record. For example, an abnormal exercise stress test or abnormal sleep studies, appropriately evaluated and consistent with the other evidence in the case record.
- Neurally mediated hypotension as shown by tilt tables testing or another clinically accepted form of testing
- An elevated antibody titer to Epstein-Barr virus (EBV) capsid antigen equal to or greater than 1:5120 or to early antigen equal to or greater than 1:640
- An abnormal magnetic resonance imaging (MRI) brain scan
Providing Medical Evidence to the Social Security Administration for Individuals with Chronic Fatigue Syndrome - FACT SHEET
The Social Security Administration has a Fact Sheet for healthcare professionals that guides and identifies the type of information needed for the SSA to make decisions on awarding disability to people with CFS. We have provided several tips from this Fact Sheet but encourage you to go directly to the SSA CFS Fact Sheet. Healthcare professionals can assist their CFS patients in the disability process by submitting through and complete records.
The SSA asks healthcare professionals for the following types of information in order to determine the existence of CFS, its severity, and duration of the person's impairment(s). Reports from healthcare professional should include:
- A thorough medical history. Detailed medical notes with longitudinal records are very helpful.
- Clinical and laboratory findings (both positive and negative)
- Copies of laboratory results should be provided
- Results of any mental status examinations and psychometric testing (cognitive function)
- A statement of your opinion regarding work-related activities that the patient can still do despite impairment. For example, a statement describing the patient's medical status since the onset of CFS.
- A statement about a patient's functional limitation is important. Physical limitations can be measured in standardized physical therapy or occupational medicine settings.
Disability Evaluation Under Social Security (Blue Book - September 2008)
The Social Security Administration has prepared the Disability "Evaluation Under Social Security" (known as the Blue Book) to help physicians and healthcare professionals understand how disability programs are administered. The book gives detailed guidance on what types of information physicians can provide the SSA to facilitate timely decisions.