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II. How does a person establish CFS as a medical impairment?

The person making a Social Security claim through medical evidence provided by a physician must document they have a medically-determinable impairment – that is a medically recognized, properly diagnosed illness – in this case: ME/CFS.“

A licensed physician (a medical or osteopathic doctor) is the only acceptable medical source who can provide such evidence.” (Emphasis added.)

Additional supporting evidence can be provided by other health care practitioners and other lay people, but without the primary medical evidence provided by a physician, the case will fail.

The Ruling goes on to note:
“We cannot rely upon the physician's diagnosis alone. The evidence must document that the physician reviewed the person's medical history and conducted a physical exam. We will review the physician's treatment notes to see if they are consistent with the diagnosis of CFS; determine whether the person's symptoms have improved, worsened, or remained stable; and establish the physician's assessment of the person's physical strength and functional abilities.”

Despite the fact that the CDC definition allows for physician diagnosis based on symptoms and exclusion of other illnesses and conditions, the Ruling requires that for the purposes of establishing disability “there must also be required medical signs or laboratory findings.” (Emphasis added.)

What are the medical signs?

“For the purposes of Social Security disability evaluation, one or more of the following medical signs clinically documented over a period of at least 6 consecutive months help establish the existence of an MDI of CFS:

  • Palpably swollen or tender lymph nodes on physical examination;
  • Non-exudative 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 CCC and ICC explain that an acute infectious inflammatory event may precede the onset of CFS, and that other medical signs may be present, including the following:
  • Frequent viral infections with prolonged recovery;
  • Sinusitis;
  • Ataxia;
  • Extreme pallor; and
  • Pronounced weight change.”

This short list is not strictly limited: note the reference, “Any other medical signs that are consistent with medically accepted clinical practice and consistent with the other evidence in the record.” Hence, a physician well-educated and experienced in CFS practice may be able to provide additional signs consistent with CFS depending on the individual case. It should be clearly understood that CFS disability documentation is not necessarily limited to the signs specifically listed. Many patients may not have one or more of the listed signs, but will have others known to be consistent with CFS.

The inclusion in the signs of frequent viral infections with prolonged recovery is a new recognition of another hallmark of the illness; so also is the new inclusion of an “acute infectious inflammatory event [that] may precede the onset of CFS”.

The new acceptance of these signs is a very distinct improvement in Social Security’s criteria and recognition of the illness.

Again, one or more physicians must fully document the medical signs, and this should be done over sequential office visits.

All of these signs, including their severity and chronicity, should be carefully documented in the doctor(s)’ notes and medical reports.

Laboratory findings

Subsection C outlines acceptable laboratory findings as follows:

“At this time, we cannot identify specific laboratory findings that are widely accepted as being associated with CFS. However, the absence of a definitive test does not preclude our reliance upon certain laboratory findings to establish the existence of an MDI in people with CFS. While standard laboratory test results in the normal range are characteristic for many people with CFS, and they 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 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; 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).”

Essentially, these tests are the same as those stated in the 1999 Ruling.

Comments on these laboratory tests:
The EBV titer threshold numbers are so high as to have only occasional diagnostic purpose for selecting cases of CFS. Most patients may have above average titers, but not in the stated range. Above average numbers for EBV or other herpes viruses should be included as indicative of ME/CFS, especially if tests show a viral reactivation.

Only in a small percentage of CFS patients will MRI brain scans show abnormalities as punctate white spots. However, a patient showing abnormalities on one scan will often on a second scan show perfectly normal results. Therefore, such scans are likely diagnostic only in a minority of cases. Many patients, however, not showing diagnostic results on other tests may feel compelled to obtain an MRI in an effort to document their illness. MRIs are costly, and without insurance, beyond the reach of many patients. Moreover, only a neurologist familiar with the relation of punctate white spots to CFS would usually be to provide the likely diagnostic connection to CFS.

A proportion of CFS patients have neurally-mediated hypotension. Tilt-table tests are expensive and may not be reimbursable. Patients seeking the test would have to receive the test from a physician following protocols known to be diagnostic for CFS patients. A tilt-table test performed by a tester unfamiliar with CFS may or may not be of value.

The Ruling appears to allow for an alternative test (“or other clinically accepted form of testing”) which might include the "poor man's tilt-table": the taking of blood pressure sequentially—lying down, then immediately after standing, and then 3 minutes later, standing again. Such a test performed by a CFS-informed physician could be of value if a standard tilt-table test is not available.

Sleep studies certainly may show abnormalities in CFS patients. However, the CFS diagnostic value of the sleep testing for Social Security will depend on the tester’s knowledge of abnormal sleep architecture in the illness.

Exercise stress tests performed on CFS patients often appear normal during and immediately after the test itself—but abnormal effects may only appear as severe insufficiency of recovery in the days following the testing. Therefore, a tester familiar with CFS will document the “recovery period” (or lack of it) as an integral part of the test.

Hence, some of these lab tests listed will be difficult for most CFS patients to obtain and if not knowledgeably performed may not be diagnostic in a substantial percentage of cases.

Additional signs and laboratory findings

However, the current Ruling includes additional important text relating to:

“Additional signs and laboratory findings:
Because of the ongoing research into the etiology and manifestations of CFS, the medical criteria discussed above are only examples of physical and mental signs and laboratory findings that can help us establish the existence of an MDI; they are not all-inclusive. As medical research advances regarding CFS, we may discover additional signs and laboratory findings to establish that people have an MDI of CFS. For example, scientific studies now suggest there may be subsets of CFS with different causes, including viruses such as Human Herpesvirus 6. Thus, we may document the existence of CFS with medical signs and laboratory findings other than those listed above provided such evidence is consistent with medically accepted clinical practice, and is consistent with the other evidence in the case record.” (Emphasis added.)

Therefore, physicians and patients should not be limited by the specific laboratory findings outlined. Abnormal antibody findings or the continuing presence of other infectious agents should be documented.

Furthermore, it is well-established among ME/CFS knowledgeable clinicians that certain abnormalities in blood work can help in the confirmation of CFS.

Dr. Anthony Komaroff, a leading specialist in CFS, cites the following laboratory abnormalities as supportive of a CFS diagnosis (while these are not listed in the Ruling, they should be documented):

Laboratory Abnormalities and Chronic Viral Fatigue Syndrome (CFS)

  • Mild leukopenia (3000-5000/mm)
  • Moderate monocytosis (7%-15%)
  • Relative lymphocytosis (>40%)
  • Atypical lymphocytosis (1%-20%)
  • Slight elevation in SGOT and SGPT
  • Erythrocyte sedimentation rate unusually low (0-4mm)
  • Partial reduction in immunoglobulins
  • Circulating immune complexes (low levels)
  • Increased CD4/CD8 ratio

Also, very important: In Section I, “What is CFS”, B2, “Other Symptoms”, discussed above, the Ruling introduces new elements of the illness identified in the Canadian and International Consensus Criteria. Many of these symptoms can be identified objectively as medical signs or in laboratory testing. If the diagnosing physician identifies such symptoms and conditions, and s/he can document their signs and obtain identifying lab or other testing, then such positive documentation should be provided to Social Security.

Such conditions, cited in the Ruling, include:
“Muscle weakness; Visual difficulties (for example, trouble focusing, impaired depth perception, severe photosensitivity, or eye pain); Respiratory difficulties (for example, labored breathing or sudden breathlessness); Cardiovascular abnormalities (for example, palpitations with or without cardiac arrhythmias); Gastrointestinal discomfort (for example, nausea, bloating, or abdominal pain); and Urinary or bladder problems (for example, urinary frequency, nocturia, dysuria, or pain in the bladder region).”

Mental limitations

“E. Mental limitations” is the next subsection, and reads as follows:

“Some people with CFS report ongoing problems with short-term memory, information processing, visual-spatial difficulties, comprehension, concentration, speech, word-finding, calculation, and other symptoms suggesting persistent neurocognitive impairment. When ongoing deficits in these areas have been documented by mental status examination or psychological testing, such findings may constitute medical signs or (in the case of psychological testing) laboratory findings that establish the presence of an MDI. When medical signs or laboratory findings suggest a persistent neurological impairment or other mental problems, and these signs or findings are appropriately documented in the medical record, we may find that the person has an MDI.”

CFS patients and their physicians must understand both the assistance provided by this section, but also be acutely aware of its pitfalls—so as not to be misguided into undermining CFS illness diagnosis. The above findings fall into two different diagnostic categories: “neurocognitive impairments” and “mental problems”.

Neurocognitive impairments, as listed, are a hallmark of the biological aspects of CFS and are suffered by a high proportion of patients. When they are documented by proper testing, the impairments provide important laboratory documentation of the illness. However, despite the text of the Ruling, neurocognitive impairments in CFS are best determined by “neuropsychological testing” not “psychological testing.”

Very important: Neuropsycholgical testing will only be diagnostically helpful in the hands of an experienced tester familiar with CFS. In the wrong and inexperienced hands such testing may falsely indicate a psychological disorder. Neuropsychological testing from an experienced CFS tester is probably not easily available in many parts of the U.S. Such testing is also relatively expensive. Yet obtaining the proper neuropsychological testing may be one of the best ways, under these guidelines, to provide a positive laboratory finding.

Despite some prevailing opinion that CFS claimants must obtain neuropsychological testing in order to have a chance at obtaining Social Security benefits, the fact is that such opinion is both incorrect and may lead to harmful results if the testing is done by an tester inexperienced with CFS.

Many, many CFS patients (likely in the thousands) have been approved for benefits without having had neuropsychological testing. A CFS patient who receives testing from an unreliable tester may receive an opinion that the neurocognitive deficits are based on a psychological disorder—thereby undermining the CFS diagnosis. If a patient does not know of an experienced tester familiar with CFS, it would be more prudent not to be tested.

Mental status examination

The text of the Ruling mentions a “mental status examination” along with psychological testing as a method of documenting the types of neurocognitive deficits listed in the text, e.g. short-term memory, information processing, word-finding, calculation, etc.

The 1994 CDC case definition describes a mental status examination in the following terms:

“A mental status examination to identify abnormalities in mood, intellectual function, memory, and personality. Particular attention should be directed toward current symptoms of depression or anxiety, self-destructive thoughts, and observable signs such as psychomotor retardation. Evidence of a psychiatric or neurological disorder requires that an appropriate psychiatric, psychological, or neurological evaluation be done.”

However, the CDC diagnostic criteria states that the mental status examination is performed by the diagnosing physician—and therefore does not necessarily require examination by a psychiatrist or other mental health professional.

The term, "mental status examination”, does not refer to any standardized or formal test or procedure of evaluation; instead, the term refers to a fairly informal and basic assessment of the presence of any disorders or symptoms listed just above; certainly what constitutes a "mental status examination" will vary among examining physicians. The CDC definition indicates that if evidence of a psychiatric or neurological disorder is found, then a further psychiatric, psychological, or neurological evaluation would be required.

Here CFS patients and the physicians assisting in documentation of their CFS disability must be knowledgeable. Physicians who note symptoms of depression or anxiety must determine initially if such symptoms/conditions are largely determined by the patient’s natural reaction to a serious chronic physical illness. Such depressive symptoms are known as secondary or reactive depression. In documenting these symptoms, the physician should carefully and explicitly note their secondary nature and the CFS itself as their causative factor. By so doing, the physician will not undermine a diagnostic finding of CFS.

In some cases it is quite possible for a person to suffer both from ME/CFS and additionally a primary – not secondary – psychiatric illness. For instance a person with primary depression could also have MS. In such a case, the physician or psychiatrist must absolutely document that the person has ME/CFS independently from the psychiatric illness.

Long-term disability policies and mental impairments

***Important Caution: If a patient is also on, or applying for, long-term disability insurance, he or she should carefully examine their disability policy. Different policies use different language relating to the effect of depression, anxiety, or other mental impairments on long-term disability eligibility.

Some policies state that if a mental impairment simply “contributes to” the physically-based CFS disability, then the patient will be ineligible for LTD or the benefits will be limited to a relatively short time period.

If this language is in the disability policy, then the physician documenting CFS for Social Security should clearly note that the depression, anxiety, etc. does not, in any way, contribute to the disability—that the disability and the inability to work is entirely the result of the CFS.

For the patient who is applying for, or already receiving, both LTD and Social Security benefits, it is critical to utilize a single knowledgeable attorney who is familiar with CFS, as well as being competent in representation for both Social Security and LTD benefits. As just discussed, how the person is represented for Social Security can have profound effects on their LTD eligibility. Having one attorney make sure the representation for both is coordinated is essential. The patient should not accept an insurance company’s offer to provide an attorney to represent them before Social Security. Such representation can provide the insurance company with information that could affect eligibility for LTD benefits.

If the physician feels s/he is not qualified to make a proper diagnosis of CFS in the light of the patient’s mental/emotional symptoms, then a referral should be made to a mental health professional familiar with CFS—so that a possible misdiagnosis of a psychiatric illness to the exclusion of CFS will not be made. Also, if a treating physician judges that depression or anxiety secondary to CFS is sufficiently serious in itself and requires treatment, then referral should be made to a mental health professional who can correlate mental health treatment to CFS.