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
• A number of studies and patient surveys have found patients with ME/CFS to have, on average, a lower quality of life, to be more severely disabled, and to have more comorbid chronic illnesses than patients with any of the other chronic illnesses used for comparison. (Neurological Alliance, 2019; Hvidberg et al. 2015; Nacul et al. 2011)

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 test results

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.

Notable studies

• 2019, Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies - (Full text)

People with ME/CFS often feel under pressure to continue working when they first become ill or when their symptoms worsen. Unfortunately, trying to push through this illness is counterproductive, potentially causing longer sickness absences and slower recovery.

• 2021, CFS patients remain severely disabled after specialist treatment with CBT in the UK - (Full text)

See also

• Severity definitions
• Access to benefits

Departments of Disability and Benefits

• Department for Work and Pensions (UK)
• Social Security Administration (US)

Other

• Bell CFIDS disability scale
• Comorbidities
• Disability studies
• International Consensus Criteria
• Severe and very severe ME
• Symptom scales
• List of abnormal findings in chronic fatigue syndrome and myalgic encephalomyelitis

Learn more

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

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

chronic illness any long-term illness, regardless of the severity. Chronic illnesses are typically incurable, requiring long-term management.

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)

See Canadian consensus criteria.

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".

See International Consensus Criteria.

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.

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.