On (4/30/99), the Social Security Administration (SSA) published Social Security Ruling “SSR 99-2p: Policy Interpretation Ruling Titles II and XVI: Evaluating Cases Involving Chronic Fatigue Syndrome (CFS)” to clarify its policies for evaluating claims for disability on the basis of Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).
This first article in a two-part series describes CFS, summarizes Social Security’s Ruling, and discusses how to use the Ruling to support an application for Social Security disability benefits based on CFS/CFIDS.
Chronic Fatigue Syndrome (CFS)
Systemic (body-wide) disorder consisting of profound fatigue and other symptoms that may vary in incidence (when it occurs), duration (how long it lasts), and severity (degree of symptoms and impact on ability to function and work)
Requires the presence of clinically evaluated, persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong)
Cannot be explained by another physical or mental disorder
Is not the result of ongoing exertion (activity) – meaning symptoms may exist even without activity
Is not substantially alleviated by rest
Causes prolonged fatigue that lasts 6 months or more
Significantly reduces occupational (work), educational, social, and personal levels of activities
A diagnosis of exclusion, made "only after alternative medical and psychiatric causes of chronic fatiguing illness have been excluded" (Annals of Internal Medicine, 121:953-9, 1994)
Centers for Disease Control and Prevention (CDC) criteria for the diagnosis of CFS
Requires the concurrence of 4 or more of the following symptoms, all of which must have persisted or recurred during 6 or more consecutive months of illness and must not have pre-dated the fatigue:
Self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities
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
Unrefreshing sleep
Postexertional malaise lasting more than 24 hours
CFS can cause a wide range of other symptoms including:
Muscle weakness
Abdominal, chest, and jaw pain
Cough and shortness of breath
Skin sensations and tingling
Diarrhea and weight loss
Sleep disturbances
Visual difficulties (trouble focusing or severe photosensitivity)
Orthostatic intolerance (lightheadedness or increased fatigue with prolonged standing)
Other neurocognitive problems, such as difficulty comprehending and processing information
Fainting and dizziness
Mental problems, such as depression, irritability, anxiety, and panic attacks
The exact cause of CFS is not known
Due to its similarity to chronic mononucleosis, it was once thought that CFS is caused by a virus, such as Epstein-Barr virus (EBV), but research has not proven this.
Research has not proven a connection with any known infectious agents.
Some research has shown similar antibodies and immune complexes found in autoimmune diseases like lupus, but no associated tissue damage was found.
Despite also being called Chronic Fatigue and Immune Dysfunction Syndrome, opportunistic infections or increased risk for cancer observed in persons with immunodeficiency diseases or in immunosuppressed individuals is not found in CFS.
Some studies suggest that the central nervous system and endocrine (hormone) system may play a role in CFS with studies showing some CFS patients produce less cortisol (stress hormone) than healthy patients, though cortisol levels were still within the normal range.
Studies have shown that neurally mediated hypotension is common in CFS patients. This condition, detected by tilt table testing, results in lowered blood pressure, and may cause lightheadedness, dizziness, fatigue, and headaches.
Establishing a medically determinable impairment with CFS
The CDC’s criteria for diagnosing CFS are based mainly on a list of symptoms (patient's complaints) that the patient reports to his or her medical provider.
However, Social Security’s rules require that a disability be based on the existence of a medically determinable impairment – a condition that can be shown by medical evidence, consisting of medical signs (physical findings), symptoms (patient’s complaints), and laboratory findings (findings on diagnostic tests).
Because the existence of a medically determinable impairment requires more than just symptoms, SSR 99-2p explains that the symptoms of CFS must be accompanied by appropriate medical signs or laboratory findings before it is considered a medically determinable impairment.
Because of this requirement, SSR 99-2p offers examples of medical signs and laboratory findings (tests) that can be used to establish the existence of a medically determinable impairment with CFS.
These lists of medical signs laboratory findings and are not all-inclusive - meaning there may be others not listed.
The existence of a medically determinable impairment associated with CFS may be documented with medical signs or laboratory findings other than those listed below, as long as such documentation is consistent with medically acceptable clinical practice; and consistent with other evidence in the applicant’s medical records.
And because research is ongoing for the cause of CFS, additional signs and lab tests may be eventually found that can also be used to establish a medically determinable impairment in applicants with CFS.
In the mean time, use the following lists as a guide when presenting your case or developing Social Security disability claims for CFS.
List 1 - Physical medical signs
For purposes of Social Security disability evaluation, one or more of the following medical signs documented over a period of at least 6 consecutive months establishes the existence of a medically determinable impairment for individuals with CFS:
Palpably swollen or tender lymph nodes on physical examination
Nonexudative pharyngitis (sore throat without pus)
Persistent, reproducible muscle tenderness on repeated examinations, including the presence of positive tender points
Any other medical signs that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record (this is rather vague)
List 2 - Laboratory findings
Even though, at this time, there are no specific laboratory findings that are widely accepted as being associated with CFS, SSA allows that the following laboratory findings establish the existence of a medically determinable impairment in individuals 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
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.
List 3 - Mental findings
Mental findings that establish the existence of a medically determinable impairment in individuals with CFS include ongoing problems with:
When ongoing deficits in these areas have been documented by mental status examination (medical signs) or psychological testing (laboratory findings), such findings establish the presence of a medically determinable impairment.
Also, if individuals with CFS are shown to have medical signs of anxiety or depression, indicative of the existence of a mental disorder, the existence of a medically determinable impairment is established.
Bottom line
Your condition must fulfill the CDC’s rules for diagnosis before Social Security will even consider that you have CFS.
Only one finding is necessary from any of the three lists discussed above to establish CFS as a medically determinable impairment.
The above lists of medical (physical and mental) signs and laboratory findings represent a breakthrough for CFS applicants because Social Security is providing specific examples that can be used to support a disability claim for CFS. Use the examples provided as a checklist to make sure medical records are appropriately documented and contain that information.
Importance of ongoing relationships with treating medical sources
Applicants should have an ongoing relationship with a medical provider who can support their disability application by providing detailed medical records and possibly a letter of support.
The CDC’s definition of CFS requires a time frame of symptoms of at least 6 consecutive months.
If physical medical signs are going to be used to establish CFS as a medically determinable impairment, one or more signs in the list must be documented over a period of at least 6 consecutive months. (Note that laboratory findings do not require the 6 month time frame to establish CFS as a medically determinable impairment.)