Disability Doc

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:

• Short-term memory
• Information processing
• Visual-spatial difficulties
• Comprehension
• Concentration
• Speech
• Word-finding
• Calculation
• And any other symptoms suggesting persistent neurocognitive impairment

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.)

This is the second part of a two-part series of articles summarizing Social Security Ruling "SSR 99-2p: Policy Interpretation Ruling Titles II and XVI: Evaluating Cases Involving Chronic Fatigue Syndrome (CFS)."

What follows is a detailed description of how disability claims are evaluated under Social Security’s rules. It includes concepts from the Process Unification rulings, which are difficult to grasp - one reason why SSA tends to inconsistently apply these rulings. The discussion focuses on claims for CFS, but the general idea is the same no matter the condition.

At the end of this article, I give you a nice summary of how to present a strong case for disability due to CFS.

If you are not familiar with the rules and regulations Social Security uses to evaluate disability claims, you should first read all the modules found in the “Information for Disability Applicants” section of this web site. This is because if you read and understand those modules first, you will better understand this article. Otherwise, you may find the following information confusing. I attempted to simplify the descriptions and terms used, but don’t be upset if you still don’t understand it all. The rules and regulations used by Social Security’s disability program are very complex.

Sequential evaluation process

Claims involving CFS are decided using the sequential evaluation process, just as for any other impairment. Once a medically determinable impairment has been found to exist, the severity of the impairment must be established. The severity of an individual's impairment is determined based on the totality of medical signs, symptoms, and laboratory findings, and the effects of the impairment, including any related symptoms, on the individual's ability to function.

Also, several other disorders (including, but not limited to, Fibromyalgia Syndrome (FMS), multiple chemical sensitivity, and Gulf War Syndrome, various forms of depression, and some neurological and psychological disorders) may share symptoms and other similar findings to those of CFS. When there is evidence of another disorder that may adequately explain the individual's symptoms, it may be necessary to pursue additional medical or other development.

Step 2 of the sequential evaluation process

When an individual with CFS has a medically determinable impairment, the decision-maker must consider that the individual has an impairment that could reasonably be expected to produce the individual’s symptoms associated with CFS, and evaluate the intensity and persistence of the symptoms.

This concept is important because it automatically requires the decision-maker to acknowledge that CFS established as a medically determinable impairment can reasonably be expected to produce the symptoms associated with CFS. (Take note all you claimant representatives!)

For example, if an individual with CFS has a medically determinable impairment, and the individual alleges fatigue, pain, symptoms of neurocognitive problems, or other symptoms consistent with CFS, these symptoms must be considered in deciding whether the individual's impairment is "severe" at step 2 of the sequential evaluation process and at any later steps.

If fatigue, pain, neurocognitive symptoms, or other symptoms are found to have more than a minimal effect on an individual's ability to perform basic work activities, the decision-maker must find that the individual has a "severe" impairment.

Step 3 of the sequential evaluation process

When an individual is found to have a severe impairment, the decision-maker must next consider whether the severity of the individual's impairment closely matches a listing in Social Security’s “Listing of Impairments.” Since CFS is not a listed impairment, an individual with CFS alone cannot be found to have an impairment that meets a listing; however, the findings in each case should be compared to any pertinent listing to decide whether CFS equals a listing.

When individuals with CFS have psychological manifestations related to CFS, decision-makers should consider whether the individual's mental impairment meets or equals the severity of any impairment in the mental disorders listings.

Steps 4 and 5 of the sequential evaluation process

For impairments that do not meet or equal the severity of a listing, decision-makers must assess a residual functional capacity (RFC), and then proceed to the fourth and, if necessary, the fifth step of the sequential evaluation process. In assessing RFC, all of the individual's symptoms must be considered in deciding how such symptoms may affect functional abilities.

If it is decided that CFS prevents the performance of past relevant work (or if there was no past relevant work), a finding must be made about the individual's ability to perform other work.

Many individuals with CFS are "younger individuals," ages 18 through 49. Age, education, and work experience are not usually considered to significantly limit the ability of individuals under age 50 to make an adjustment to other work, including unskilled sedentary work. However, a finding of disabled is not precluded for those individuals under age 50 who do not meet all of the criteria of a specific rule and who do not have the ability to perform a full range of sedentary work. The conclusion about whether such individuals are disabled will depend primarily on the nature and extent of their functional limitations or restrictions.

Whether the individual will be able to perform other work requires judgment regarding the type and extent of the individual's limitations or restrictions, and the extent of the erosion of the occupational base for sedentary work.

Duration

The medical signs and symptoms of CFS fluctuate in frequency and severity and often continue over a period of many months or years. Thus, appropriate documentation should include a longitudinal clinical record of at least 12 months prior to the date of application, unless the alleged onset of CFS occurred less than 12 months in the past, or unless a fully favorable decision can be made without additional documentation.

The record should contain detailed medical observations, treatment, the individual's response to treatment, and a detailed description of how CFS limits the individual's ability to function over time.

When the alleged onset of disability secondary to CFS occurred less than 12 months before a disability decision is made, the decision-maker must evaluate the medical evidence and project the degree of impairment severity that is likely to exist at the end of 12 months.

Information about treatment and response to treatment as well as any medical source opinions about the individual's prognosis at the end of 12 months are helpful in deciding whether CFS is expected to be of disabling severity for at least 12 consecutive months.

Continuing Disability Reviews

In those cases in which an individual is found to be disabled based on CFS, but medical improvement is expected, a “continuing disability review” will be scheduled. This takes into account individual case facts, such as the combined severity of other impairments and the individual's vocational (work) factors.

Documentation

As with all claims for disability, documentation of medical signs or laboratory findings in cases involving CFS is critical to establishing the presence of a medically determinable impairment. In cases in which CFS is alleged, longitudinal clinical records reflecting ongoing medical evaluation and treatment from the individual's medical sources, especially treating sources, are extremely helpful in documenting the presence of any medical signs or laboratory findings, and the individual's functional status over time.

Every reasonable effort should be made to secure all available, relevant evidence in cases involving CFS to ensure appropriate and thorough evaluation. Generally, evidence for the 12-month period preceding the month of application should be requested unless there is reason to believe that development of an earlier period is necessary, or unless the alleged onset of disability is less than 12 months before the date of the application.

Recontacting Medical Sources/Consultative Examinations

If the decision-maker finds that medical evidence is inadequate to decide whether the individual is disabled, he or she must first recontact the individual's treating or other medical sources to determine whether the additional information needed is readily available.

Only after the decision-maker determines that the information needed is not readily available from the individual's health care providers, or that the necessary information or clarification cannot be sought from the individual's health care providers, should the decision-maker arrange for a consultative examination.

Resolution of Conflicts

Conflicting evidence in the medical record is not unusual in cases of CFS due to the complicated diagnostic process involved in these cases. SSA must attempt to contact treating or other medical sources to resolve any such conflicts.

Medical opinions from treating sources about the nature and severity of an individual's impairment must be considered, and may be entitled to controlling weight. “Controlling weight” means that SSA must adopt the opinion of the treating source regarding his or her patient’s level of function.

Controlling weight cannot be given to medical source opinions reserved to the Commissioner of Social Security, such as "totally disabled" or "unable to work."

If SSA finds that a treating source's medical opinion about the nature and severity of an individual's impairment is well-supported by medically acceptable clinical and laboratory diagnostic techniques; and is not inconsistent with the other substantial evidence in the case record, the decision-maker must give it controlling weight.

Assessing Credibility

If the existence of CFS as a medically determinable impairment that could reasonably be expected to produce the symptoms has been established, but an individual's statements about the intensity, persistence, or functionally limiting effects of symptoms are not substantiated by objective medical evidence, the decision-maker must consider all of the evidence in the case record, including any statements by the individual and other persons concerning the individual's symptoms.

The decision-maker must then make a finding on the credibility of the individual's statements about symptoms and their effects on function. When additional information is needed to assess the credibility of the individual's statements about symptoms and their effects, the decision-maker must make every reasonable effort to obtain available information that could shed light on the credibility of the individual's statements.

Treating and other medical sources

In evaluating credibility, the decision-maker should ask the treating or other medical sources to provide information about the extent and duration of an individual's impairment, including observations and opinions about how well the individual is able to function, the effects of any treatment, including side effects, and how long the impairment is expected to limit the individual's ability to function.

Opinions from an individual's medical sources, especially treating sources, concerning the effects of CFS on the individual's ability to function in a sustained manner in performing work activities or in performing activities of daily living are important in enabling decision-makers to draw conclusions about the severity of the impairment and the individual's RFC. Any information a medical source is able to provide about the individual's impairment and functional capacities related to CFS will be helpful.

Third-party information

This includes evidence from medical sources that are not “acceptable medical sources” but who have provided services to the individual, and may be very useful in deciding the individual's credibility.

Information from persons other than the applicant and his or her treating sources may help to assess an individual's ability to function on a day-to-day basis, and to describe the individual's abilities over a period of time.

Such information may include:

• Information from neighbors, friends, relatives, or clergy
• Statements from such individuals as past employers, rehabilitation counselors, or school teachers about the individual's impairment and the effects of the impairment on functioning in the work place, rehabilitation facility, or educational institution
• Statements from other practitioners with knowledge of the individual including nurse-practitioners, physicians' assistants, naturopaths, therapists, social workers, and chiropractors
• Statements from other sources with knowledge of the individual's ability to function in daily activities

The decision-maker is supposed to carefully consider all of this information when making findings about the credibility of the individual's allegations regarding functional limitations.

How to present a strong case for disability due to Chronic Fatigue Syndrome

• Be consistent in what you describe to your doctors and to Social Security about the severity of your symptoms and how they limit your activities.
• Maintain a close relationship with your medical sources, clearly describing your symptoms, and making sure your doctor documents your complaints in the medical record.
• See your doctor on a regular basis (at least 3 times a year) if possible.
• Have your doctor, preferably a specialist like a neurologist, write a letter in support of your claim. In it, that doctor should describe your physical findings, any abnormal lab tests, and tell specifically how you are limited in your ability to normal daily activities and work. A good sentence your doctor should use is "My patient is unable to sustain an 8-hour work day, five days a week, due to the severely limiting fatigue (he or she) experiences from Chronic Fatigue Syndrome."
• Keep a daily diary of your symptoms and activities, and use this diary to give information to Social Security about how you are limited by your symptoms.
• Tell Social Security how long your symptoms last, what makes your symptoms worse; and what, if anything, improves your symptoms.
• Tell if you are ever bedridden because of your symptoms and how long that lasts.
• Don’t be so overly detailed in your descriptions that it appears you have “written a book.”
• Tell if you are able to do some activities, but be sure to describe any resulting symptoms from doing those activities.
• Don’t be embarrassed to mention any mental difficulties, such as depression or anxiety.
• Most importantly, be persistent and appeal the decision if you are denied.

With perseverance, you will succeed. Good luck.