RESOURCES

Disability and Chronic Fatigue Syndrome (ME/CFS) II: Getting The Diagnosis by Cort Johnson

Your Physician’s Role -  Finding a doctor knowledgeable in chronic fatigue syndrome (ME/CFS) and in disability matters is crucial. Your doctor is responsible for documenting that you have chronic fatigue syndrome (ME/CFS) and clearly stating that the nature and severity of your illness keeps you from working. He does this by providing an evaluation letter and your complete medical records.

STOP! Tell your physician that you are in the midst of obtaining a claim for disability. If she/he is reluctant to support you should go elsewhere. Disability evaluations need to be tightly constructed documents. If your medical record reflects your physician is anything but entirely supportive of your claim you may be rejected.

The 1999 Social Security Ruling on Chronic Fatigue Syndrome changed the landscape on disability and Social Security. This ruling explains

“exactly what medical evidence medical doctors should submit and how they should submit, what laboratory tests will establish a case of CFS; what documentation doctors, patients and others should provide as evidence of a patients inability to work” (Ken Casanova)

Documenting Your Case

Step 1: Getting the Diagnosis. The first step in this process is proving that you do indeed have chronic fatigue syndrome (ME/CFS). 

Chronic fatigue syndrome (ME/CFS) is diagnosed by symptoms and by eliminating other illnesses that could cause them. Because symptoms play a large role it’s important that your medical record state that you have symptoms listed in the standard definition of the disease, the International Definition of 1994. Note that many patients do not exhibit all the symptoms below.

To Receive a Diagnosis of Chronic Fatigue Syndrome (ME/CFS) a Patient Must Exhibit:

Fatigue of new or definite onset that causes substantial reductions in your work or educational or social or personal activities plus four of the following eight symptoms:

• muscle pain
• multi-joint pain without swelling or redness
• unrefreshing sleep
• post-exertional malaise – symptom flare up after exercise lasting more than 24 hours
• impairment in short-term memory or concentration
• sore throat
• swollen lymph nodes
• headaches of a new type or severity

Specific Kind of Onset - Your physician must document that your fatigue is of ’new or definite onset’. What the Social Security Administration needs to know is that you experienced a different kind of fatigue that coincided with the appearance of the symptoms associated with chronic fatigue syndrome. Your physician should state that such and such a (general) date - i.e. that your disease started a specific date - not simply that you’re ‘fatigued’.

Exclusionary Conditions: Your physician must also determine that your fatigue is not likely the result of other conditions such as multiple sclerosis, hypothyroidism, narcolepsy, depression, etc. Chronic fatigue syndrome (ME/CFS) patients can have these conditions and still receive a diagnosis of chronic fatigue syndrome (ME/CFS) but in order to get disability for chronic fatigue syndrome it must be considered your primary disorder. Your doctor should assess whether you have one of these conditions through his clinical evaluation and the results of blood tests.

Thankfully these tests are generally included in the standard blood work up that most physicians do. They include a complete blood count with leukocyte differential, erythrocyte sedimentation rate, serum levels of alanine aminotransferase, total protein, albumin, globulin, alkaline phosphatase, calcium, phosphorous, glucose, blood urea nitrogen, electrolytes, and creatinine, thyroid stimulating hormone and urinalysis.

Mood Disorders: Your physician must also assess whether a psychiatric condition or ‘mood disorder’ could be causing your symptoms. (Prior to the 1999 ruling many people seeking disability for ME/CFS before the 1999 ruling were simply deemed to have a mood disorder. ) Some chronic fatigue syndrome (ME/CFS) patients do have mood disorders and a mood disorder itself does not detract from a diagnosis of ME/CFS.

If a mood disorder is ‘primary’ though the SSA may decide that it, not chronic fatigue syndrome (ME/CFS), is causing your symptoms. If it is ‘secondary’ to ME/CFS then it is believed to be a reaction to the limitations that disease imposes not to the disease itself. (This is not unusual; rates of mood disorder are increased in chronic diseases in general).

If the doctor simply reports that you are depressed or have depression then he/she is giving the SSA the opportunity to decide how important a role your mood disorder plays in your illness. In order to avoid this ambiguity the doctor should be careful to spell out whether your the mood disorder present is ‘primary’ or ‘secondary’. The greatest danger here seems to be not that the doctor believes that depression, for instance, is ‘primary’ but that he/she forgets to specifically label the mood disorder as ‘secondary’ thus opening the door to an unwelcome interpretation.

If the patient has a history of depression that predates ME/CFS the physician should determine whether he/she suffered from major chronic depression or episodes of minor depression.

Secondary Mood Disorder Evaluation: If the doctor finds evidence that a mood disorder is present then the SSA will very likely want the patient to undergo further psychological, psychiatric or neurological evaluations. The potential pitfall here is that the patient is then seen by a health professional who has little understanding of chronic fatigue syndrome (ME/CFS) and provides a diagnosis of a primary mood disorder – thus complicating the diagnosis.

Ken Casanova, the author of the Mass CFS-FM Disability Handbook, recommends that patients in this situation talk with the physician, apparently with an aim of suggesting that he/she word the disability letter in such a way as to negate the need for further evaluation. One way to do this is to refer patients to neuropsychologists familiar with ME/CFS to document the cognitive problems present. Cognitive problems point the way to a neurological rather than a psychological cause of the disorder. Neuropsychological exams often form the foundation of a patient’s disability case but are quite expensive – generally costing several thousand dollars.

Most neuropsychologists are not, however, familiar with the specific cognitive abnormalities found in ME/CFS. It's important that you find neuropsychologist who will use the correct test to document these (Dr. Cheney has referred patients to Taras Ornischenko in the past. Sheila Bastien in California has also been commonly used by ME/CFS patients. (Please e-mail me if you know of other ME/CFS knowledgeable neuropsychologists. )

Dig Deeper: Read the Massachusetts CFS-FM Disability Handbook

Multiple chemical sensitivity sufferers take note - MCS or environmental illness is one of the more controversial conditions associated with CFS but MCS in combination with CFS is explicitly provided for in the 1999 Social Security guidelines; therefore MCS sufferers with chronic fatigue syndrome can use the limitations they experience due to chemical sensitivity as part of their CFS disability package (as can people with fibromyalgia, anxiety disorders, somatoform disorders and non-psychotic/melancholic depression)

Buttressing the Diagnosis. Your doctor’s report in combination with the results of standard blood tests (see below) is sufficient to obtain a diagnosis of chronic fatigue syndrome (ME/CFS). While the SSA does not require the below tests it considers abnormal findings on them to be considered strong evidence that you have the disease. They include

• An elevated antibody titer to Epstein-Barr Virus capsid antigen of equal to or greater than 1:5120 or an early antigen equal to or greater than 640
• MRI abnormalities in the brain
• Orthostatic dysfunction (problems standing) demonstrated by tilt-table testing
• Abnormal sleep studies
• Abnormal exercise tests
• Mental status or neuropsychiatric testing.

Most of these tests, unfortunately, are quite expensive and many are not covered by insurance plus their outcome is uncertain; Ken Casanova notes that the very high EBV antibody titers and MRI abnormalities are relatively rare in ME/CFS and orthostatic dysfunction testing is plagued by different testing methodologies. These tests assume greater significance for the second phase of getting your disability: proving your limitations.

Standard ME/CFS Tests Little Help - Note that many of the tests frequently given used by ME/CFS physicians (pathogen titers, RNase L, natural killer cell functioning, hormone tests, heavy metal tests, etc.) are not mentioned. While those tests may assist physicians in determining how to treat you they are not considered evidence of CFS by the SSA will likely provide you no assistance in receiving disability.

There is something of an escape clause, however. Recognizing that the research field is fluid the SSA noted that ‘additional signs’ that are ‘consistent with medically accepted clinical practice’ can be used as well to document ME/CFS. This demonstrates an understanding on the SSA’s part that future research findings will indicate that other tests will apply to ME/CFS and they may be willing to accept them if your doctor can make an effective argument that they apply.

In general any tests documenting immune, endocrine or neurological abnormalities can assist in a chronic fatigue syndrome diagnosis.

Step Two: Documenting Your Limitations – hopefully you’ve done what you need to do to get your diagnosis. Congratulations but, according to ME/CFS attorney Scott Davis, that’s only about 10% of the process.

To Part III:  Documenting Your Limitations