Getting Disability Benefits for Chronic Fatigue Syndrome

Chronic fatigue syndrome (CFS) is a complex systemic illness marked by a wide variety of symptoms. Although there's no known cause for CFS, it's frequently associated with stress, a compromised immune system, inflammation in the nervous system, and exposure to the Epstein-Barr virus or another infection. Age and gender appear to play a part too, as women between 30 and 50 are at increased risk for the disease.

If you have symptoms from CFS that keep you from working full-time for at least one year, you may qualify for Social Security disability. Veterans who can show that their chronic fatigue syndrome is service-connected may be able to get a VA rating for disability compensation in addition to Social Security benefits.

What Is Chronic Fatigue Syndrome?

As the name suggests, chronic fatigue syndrome is characterized by persistent tiredness that doesn't go away, even with rest. Social Security has adopted the diagnostic criteria for chronic fatigue syndrome from the Centers for Disease Control (CDC), a national health agency.

Under the CDC definition, doctors may diagnose chronic fatigue syndrome when a patient reports at least four of the following symptoms happening together for six consecutive months or more:

• postexertional malaise—a general crummy feeling after doing any sort of physical activity—lasting longer than 24 hours
• substantially reduced cognitive functioning, such as poor short-term memory or concentration
• sore throat
• tender lymph nodes (important immune system organs)
• muscle pain
• pain in multiple joints without redness or swelling
• unusual headaches, and
• poor sleep.

Other common symptoms can include general muscle weakness, visual difficulties, trouble standing or remaining upright, respiratory problems, heart issues, digestive discomfort, and incontinence. Psychological manifestations of chronic fatigue are common and include depression, anxiety, or irritability. Mental issues—collectively referred to as "brain fog"—can include confusion, forgetfulness, or trouble speaking.

Is Chronic Fatigue Syndrome a Disability?

The Social Security Administration awards disability benefits to people who have a medically determinable impairment that prevents them from engaging in full-time work. Under Social Security Ruling SSR 14-1p, chronic fatigue syndrome can be a medically determinable impairment if you have documentation of appropriate medical signs or laboratory findings from an acceptable medical source.

One or more of the following medical signs, clinically documented in your doctor's progress notes for no less than six consecutive months, will generally be considered evidence that your CFS is a medically determinable impairment:

• tender or swollen lymph nodes on exam
• nonexudative pharyngitis (a dry sore throat)
• chronic and reproducible muscle tenderness over multiple exams, with positive tender points
• any other medical signs—such as frequent viral infections with prolonged recovery, sinusitis, ataxia (uncoordinated muscle movements), extreme pallor (abnormal skin color), and significant weight change—that are accepted under current mainstream medical knowledge and consistent with the rest of the evidence in your case.

While doctors haven't yet found a definitive test that can confirm a diagnosis of chronic fatigue syndrome, Social Security will accept the following laboratory findings to establish the existence of a medically determinable impairment in people with CFS:

• elevated antibody titers to Epstein-Barr virus
• abnormal MRI brain scans
• tilt table tests showing neurally mediated hypotension
• abnormal sleep studies, or
• abnormal exercise stress tests.

According to SSR 14-1p, medical evidence of chronic fatigue syndrome must come from a licensed medical or osteopathic doctor. The ruling also recommends that doctors eliminate other possible causes of your symptoms before making a diagnosis of CFS.

Even then, simply having a doctor diagnose you with CFS won't be enough on its own to prove that you have a medically determinable impairment. You'll need to provide clinical notes showing that your doctor reviewed your medical history and performed a physical examination. If your doctor's records aren't consistent with a diagnosis of CFS, Social Security may deny your claim.

If your medical records don't contain enough evidence for Social Security to determine whether your chronic fatigue syndrome is a medically determinable impairment, the agency may try to contact your treating doctor for more information or arrange for you to attend a consultative examination (at no cost to you).

How Social Security Determines Disability In Chronic Fatigue Syndrome Cases

Social Security uses a five-step evaluation process to decide whether to award an applicant disability benefits. If you can first establish that you're not working at or above the level of substantial gainful activity and you have evidence showing that your CFS is a medically determinable impairment, the agency will then need to see whether you "meet a listing" or you're unable to perform any full-time work.

The agency is generally reluctant to approve disability claims based solely on chronic fatigue syndrome, a fact that shouldn't surprise people living with CFS who are used to dealing with suspicion about their disease. Claims for CFS are rarely approved at the initial or reconsideration stages. Even at the hearing level, most disability judges are reluctant to pay benefits except in the most compelling cases.

Another factor that makes it difficult for people struggling with chronic fatigue syndrome is that the disease isn't one of the listed impairments in Social Security's "Blue Book" of automatically disabling conditions. In rare cases, the agency may find that your CFS symptoms are "equal" to a related impairment in the Blue Book, such as listing 14.06(B) for undifferentiated or mixed connective tissue disease. (Read more about medical equivalency and the Blue Book.)

The vast majority of successful disability claims for chronic fatigue syndrome are decided based on a medical-vocational allowance, which takes into consideration your age, education, work history, and residual functional capacity in deciding whether you can work full-time. Your residual functional capacity, or RFC, is a description of the maximum physical and mental abilities you have despite your symptoms.

Getting the Medical Evidence Needed to Win a CFS Case

Once a medically determinable impairment has been established, Social Security evaluates the severity of your condition based on doctors' clinical notes, your subjective reports, third-party reports, and any other evidence you provide.

The more severe your symptoms are, the more limitations you'll have in your RFC. If you have enough limitations in your RFC to prevent any full-time employment, you'll be approved for disability benefits.

Gathering the proper medical evidence is essential to receiving an appropriate RFC and winning your disability claim. First, you should submit to Social Security all medical records relevant to your condition, including progress reports from your physician, the results of x-rays, MRIs, or other objective testing, and hospitalization records. If you're being treated for other mental or physical conditions in addition to chronic fatigue syndrome, provide evidence of those impairments as well.

Next, it's critical that you ask your treating primary care physician or specialist for a medical opinion about your work-related limitations. Your doctor can write a letter that addresses your physical and mental restrictions in the following areas:

• lifting, carrying, pushing, and pulling
• standing, sitting, and walking
• maintaining concentration for extended periods
• maintaining adequate attendance and punctuality, and
• understanding, remembering, and carrying out simple and complex instructions.

A good supporting opinion from a treating doctor listing deficits in these areas can quickly turn a losing disability case into a winning one. Remember that, for cases involving chronic fatigue syndrome, Social Security regulations require that medical signs and laboratory results support the existence of the disorder, so ask your doctor to mention these objective findings when explaining how and why they arrived at their diagnosis.

It can also be a good idea to keep a journal on the nature and severity of your CFS and submit it to Social Security before your disability hearing. While self-reported symptoms alone aren't enough to qualify for benefits, having a detailed record of how your symptoms limit your daily activities lends support to your claim.

Statements from third parties, including family members, neighbors, or former co-workers, can also be persuasive when helping a judge or claims examiner determine the extent of your impairments.

Getting a Chronic Fatigue Syndrome VA Disability Rating

Veterans with chronic fatigue syndrome can get disability compensation if the disorder is service-connected. Under 38 CFR § 4.88a, the VA requires that your CFS be diagnosed after you've experienced a "new onset of debilitating fatigue severe enough to reduce daily activity to less than 50 percent of the usual level for at least six months."

Your doctor must also have ruled out other causes of your symptoms, which must include six or more of the following:

• acute onset of the condition
• low-grade fever
• nonexudative pharyngitis
• palpable or tender cervical or axillary lymph nodes
• generalized muscle aches or weakness
• fatigue lasting 24 hours or longer after exercise
• headaches of a type, severity, or pattern that is different from headaches in the past
• migratory joint pains
• neuropsychologic symptoms, and
• sleep disturbance.

Once you're able to show a diagnosis of CFS based on the above criteria and you can establish a service connection, the VA will then review your medical records and assign you a disability rating (according to the Schedule of Rating Disabilities) based on how severe your symptoms are.

Getting VA compensation for chronic fatigue syndrome usually requires you to show the same kinds of records that are needed by the Social Security Administration. The VA will look at medical evidence such as your Disability Benefits Questionnaire (DBQ) and Compensation & Pension (C&P) exam to assess your limitations and assign you a corresponding rating percentage.

Here are the current VA ratings allowed for different degrees of symptom severity—meaning debilitating fatigue, cognitive impairments, or a combination of both—for CFS.

Your VA rating percentage plays a major role in determining the amount of monthly disability compensation you'll get, so make sure that you mention all the medical treatment you've received outside the VA system when you apply for benefits. The VA has a duty to assist veterans in obtaining their medical records, but that duty is more limited when dealing with private medical providers.

Can I Get a Living Allowance for CFS?

Neither the Social Security Administration nor the VA give payments specifically based on your disabling condition. As shown above, VA disability compensation is determined mainly by your percentage rating, which in turn is based on how much your symptoms limit your ability to function.

Social Security disability payments are based on the type of benefit program you qualify for—Social Security Disability Insurance (SSDI) amounts are calculated from your earnings history, while Supplemental Security Income (SSI) is needs-based and subject to income and asset limits.

The VA can offer some additional compensation for certain veterans in assisted living environments, while many states offer modest subsidies for people receiving SSI who live in assisted living facilities or with home health care providers.

If you're awarded VA or Social Security benefits, make sure to contact your local field office for the relevant agency to determine if you qualify for extra assistance.

Contact a Disability Lawyer for Help

Disability claims based on chronic fatigue syndrome are notoriously difficult to win, but you can greatly improve your chances by hiring an experienced Social Security or veterans' disability attorney to represent you. Your lawyer can handle communications with the Social Security Administration and the VA, gather the important medical records needed to support your claim, and appeal a denial if necessary.

Most disability attorneys work on contingency, meaning they don't get paid unless you win, so there's little risk in hiring a representative. Furthermore, many law firms offer free consultations for disability claims. You can ask around to find one who's a good match for you.