Disability

The degree of disability experienced by ME/CFS patients covers a wide range, but can be very severe.

Statistics

• 54% of ME/CFS patients reported being unemployed
• 25% of ME/CFS patients are housebound or bedbound at some point in their illness

Evaluation of Disability

United States

BOX C-1

Social Security Administration Evaluation of Disability

Medical Evidence

For the purposes of Social Security Disability evaluation, in addition to a diagnosis of ME/CFS that meets the Fukuda case definition, one or more of the following medical signs clinically documented over a period of at least 6 consecutive months is required to establish the existence of a medically determinable impairment (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; 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 Canadian Consensus Criteria (CCC) and International Consensus Criteria for ME (ME-ICC) explain that an acute infectious inflammatory event may precede the onset of CFS, and that other medical signs may be present, including

• – frequent viral infections with prolonged recovery,
• – sinusitis,
• – ataxia,
• – extreme pallor, and
• – pronounced weight change. [Gain or loss.]

Laboratory Findings

Specific laboratory findings are not well established for ME/CFS. However, certain laboratory findings may support the finding of an MDI in people with ME/CFS even in the absence of the medical evidence listed above. It is not unusual to find standard laboratory tests in the normal range for many patients with ME/CFS, and SSA advises that such tests 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 ME/CFS:

• an elevated antibody titer to Epstein-Barr virus (EBV) capsid antigen equal to or greater than 1:5,120, 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).

New laboratory and clinical evidence may emerge with continued research in ME/CFS. According to SSA, these findings may be considered, in conjunction with laboratory findings discussed above, in the assessment of an MDI. Depending on the type of assessment, ongoing mental limitations or neurocognitive manifestations documented by a mental status examination or psychological testing may be considered medical signs or laboratory findings.

SOURCE: Social Security Ruling, 2014.

See also

Departments of Disability and Benefits

• Department for Work and Pensions (UK)

• Social Security Administration (US)

Other

• Bell CFIDS disability scale
• Comorbidities
• International Consensus Criteria
• Severe and very severe ME
• Symptom scales

Learn more

• Feb 21, 2019. PIP appeals: 'I've been treated like a liar and a fake' (With video short)

social security disability (SSD) - United States government disability benefits. Used for those who have previously paid tax and is not means tested. (Learn more: me-pedia.org)

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

Social Security Administration (SSA) - SSA is the United States government department for disability benefits, unemployment, and social security/welfare that handles SSD and SSI disability payments.

antibodies Antibody/immunoglobulin refers to any of a large number of specific proteins produced by B cells that act against an antigen in an immune response.