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Informational Guide

SSR 14-1p: Titles II and XVI: Evaluating Cases Involving Chronic Fatigue Syndrome (CFS)

We consider a person to be “disabled”[8] if he or she is unable to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment(s)[9]which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months. We require that an MDI result from anatomical, physiological, or psychological abnormalities, as shown by medically acceptable clinical and laboratory diagnostic techniques.[10] The Act and our regulations further require that the impairment be established by medical evidence that consists of signs, symptoms, and laboratory findings; therefore, a claimant may not be found disabled on the basis of a person's statement of symptoms alone.[11] In this SSR, we explain that CFS, when accompanied by appropriate medical signs or laboratory findings, is an MDI that can be the basis for a finding of “disability.” We also explain how we evaluate CFS claims.

POLICY INTERPRETATION

 

CFS constitutes an MDI when accompanied by medical signs or laboratory findings, as discussed below. CFS may be a disabling impairment. This policy interpretation clarifies how our adjudicators should apply our regulations in determining whether a person claiming benefits based on CFS is disabled under titles II and XVI the Act. Adults and children may claim these benefits. As mentioned, we include ME as a subtype of CFS. When we refer to CFS in this SSR, we include ME.

I. What is CFS?

CFS is a systemic disorder that may vary in frequency, duration, and severity. CFS can occur in children,[12] particularly adolescents, as well as in adults. The CDC and other medical experts characterize CFS, in part, as a syndrome that causes prolonged fatigue lasting 6 months or more, resulting in a substantial reduction in previous levels of occupational, educational, social, or personal activities. In accordance with the CDC case definition of CFS, a physician should make a diagnosis of CFS “only after alternative medical and psychiatric causes of chronic fatiguing illness have been excluded.”[13]

  1. General. Under the CDC case definition, the hallmark of CFS is the presence of clinically evaluated, persistent or relapsing chronic fatigue that:

    1. Is of new or definite onset (that is, has not been lifelong);

    2. Cannot be explained by another physical or mental disorder;

    3. Is not the result of ongoing exertion;

    4. Is not substantially alleviated by rest; and

    5. Results in substantial reduction in previous levels of occupational, educational, social, or personal activities.

  2. Additional indications of CFS. CFS results in additional symptoms, some more common than others.

    1. Diagnostic Symptoms. The CDC case definition requires the concurrence of 4 or more specific symptoms that persisted or recurred during 6 or more consecutive months of illness and did not pre-date the fatigue:

      • Postexertional malaise lasting more than 24 hours (which may be the most common secondary symptom);

      • Self-reported impairment(s) in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities;[14]

      • Sore throat;

      • Tender cervical or axillary lymph nodes;

      • Muscle pain;

      • Multi-joint pain without joint swelling or redness;

      • Headaches of a new type, pattern, or severity; and

      • Waking unrefreshed.[15]

    2. Other Symptoms. Within these parameters, the CDC case definition, CCC, and ICC describe a wide range of other symptoms a person with CFS may exhibit:[16]

      • Muscle weakness;

      • Disturbed sleep patterns (for example, insomnia, prolonged sleeping, frequent awakenings, or vivid dreams or nightmares);

      • Visual difficulties (for example, trouble focusing, impaired depth perception, severe photosensitivity, or eye pain);

      • Orthostatic intolerance (for example, lightheadedness, fainting, dizziness, or increased fatigue with prolonged standing);

      • Respiratory difficulties (for example, labored breathing or sudden breathlessness);

      • Cardiovascular abnormalities (for example, palpitations with or without cardiac arrhythmias);

      • Gastrointestinal discomfort (for example, nausea, bloating, or abdominal pain); and

      • Urinary or bladder problems (for example, urinary frequency, nocturia, dysuria, or pain in the bladder region).

    3. Co-occurring Conditions. People with CFS may have co-occurring conditions, such as fibromyalgia (FM),[17] myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis,[18] Raynaud's phenomenon, migraines, chronic lymphocytic thyroiditis, or Sjogren's syndrome. Co-occurring conditions may also include new allergies or sensitivities to foods, odors, chemicals, medications, noise, vibrations, or touch, or the loss of thermostatic stability (for example, chills, night sweats, or intolerance of extreme temperatures).

II. How does a person establish an MDI of CFS?

  1. General.

    1. A person can establish that he or she has an MDI of CFS by providing appropriate evidence from an acceptable medical source.[19] A licensed physician (a medical or osteopathic doctor) is the only acceptable medical source who can provide such evidence. We cannot rely upon the physician's diagnosis alone. The evidence must document that the physician reviewed the person's medical history and conducted a physical exam. We will review the physician's treatment notes to see if they are consistent with the diagnosis of CFS; determine whether the person's symptoms have improved, worsened, or remained stable; and establish the physician's assessment of the person's physical strength and functional abilities.

    2. We will find that a person has an MDI of CFS if a licensed physician diagnosed CFS, and this diagnosis is not inconsistent with the other evidence in the person's case record. Under the CDC case definition, a physician can make the diagnosis of CFS based on a person's reported symptoms alone after ruling out other possible causes for the person's symptoms.[20] However, as mentioned, statutory and regulatory provisions require that, for evaluation of claims of disability under the Act, there must also be medical signs or laboratory findings before we may find that a person has an MDI of CFS. If we cannot find that the person has an MDI of CFS but there is evidence of another MDI, we will not evaluate the impairment under this SSR. Instead, we will evaluate it under the rules that apply for that impairment.

  2. Medical signs. For the 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 help establish the existence of an MDI of CFS:

    • Palpably swollen or tender lymph nodes on physical examination;

    • Nonexudative pharyngitis;

    • Persistent, reproducible muscle tenderness on repeated examinations, including the presence of positive tender points;[21] or

    • Any other medical signs that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record. For example, the CCC and ICC explain that an acute infectious inflammatory event may precede the onset of CFS, and that other medical signs may be present, including the following:

      • Frequent viral infections with prolonged recovery;

      • Sinusitis;

      • Ataxia;

      • Extreme pallor; and

      • Pronounced weight change.

  3. Laboratory findings. At this time, we cannot identify specific laboratory findings that are widely accepted as being associated with CFS. However, the absence of a definitive test does not preclude our reliance upon certain laboratory findings to establish the existence of an MDI in people with CFS. While standard laboratory test results in the normal range are characteristic for many people with CFS, and they should not be relied upon to the exclusion of all other clinical evidence in decisions regarding the presence and severity of an MDI, the following laboratory findings establish the existence of an MDI in people with CFS:

    • An elevated antibody titer to Epstein-Barr virus (EBV) capsid antigen equal to or greater than 1:5120, or early antigen equal to or greater than 1:640;

    • An abnormal magnetic resonance imaging (MRI) brain scan;

    • Neurally mediated hypotension as shown by tilt table testing or another clinically accepted form of testing; or

    • Any other 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).

  4. Additional signs and laboratory findings. Because of the ongoing research into the etiology and manifestations of CFS, the medical criteria discussed above are only examples of physical and mental signs and laboratory findings that can help us establish the existence of an MDI; they are not all-inclusive. As medical research advances regarding CFS, we may discover additional signs and laboratory findings to establish that people have an MDI of CFS. For example, scientific studies now suggest there may be subsets of CFS with different causes, including viruses such as Human Herpesvirus 6. Thus, we may document the existence of CFS with medical signs and laboratory findings other than those listed above provided such evidence is consistent with medically accepted clinical practice, and is consistent with the other evidence in the case record.

  5. Mental limitations. Some people with CFS report ongoing problems with short-term memory, information processing, visual-spatial difficulties, comprehension, concentration, speech, word-finding, calculation, and other symptoms suggesting persistent neurocognitive impairment. When ongoing deficits in these areas have been documented by mental status examination or psychological testing, such findings may constitute medical signs or (in the case of psychological testing) laboratory findings that establish the presence of an MDI.[22]When medical signs or laboratory findings suggest a persistent neurological impairment or other mental problems, and these signs or findings are appropriately documented in the medical record, we may find that the person has an MDI.

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