Footnotes in the Ruling

The extensive footnotes to the Ruling should be important, over time, to the further recognition of ME/CFS, to a broadening of the acceptable medical signs and laboratory tests, and for attorneys adjudicating cases before Administrative Law Judges. Attorneys should review these footnotes.

Of interest to patients and their doctors, here is a quick summary of important footnotes:

(1) The policies of the Ruling apply to claims of children (under 18).

(12) “In children, symptoms may progress more gradually than in adolescents or adults.”

(16) “In addition, generalized pain and neurological symptoms (for example, headaches, cognitive impairments, sleep disturbance, and dyslexia evident when fatigued) may be common in children and adolescents. Episodes of intense postexertional malaise may occur, eventually causing a previously active child to reduce or avoid physical activity.”

(5) “Although the panel that developed the ICC considers its criteria appropriate for diagnosing only ME, we consider the ICC helpful in establishing an MDI of CFS because of the similarities between CFS and ME. For example, ME also is a systemic disorder that manifests many of the same symptoms as CFS, including prolonged fatigue. Medical experts who consider ME to be a subtype of CFS may use hybrid terms to describe the syndrome, such as CFS/ME and ME/CFS. We adapted the CDC criteria, CCC, and ICC because the Act and our regulations require a claimant to establish by objective medical evidence that he or she has a medically determinable impairment.”

(7) This last footnote indicates that medical findings and tests outlined in both the Canadian Criteria and the Consensus Criteria may be used in documenting a case of CFS. Again, this statement is a major step forward in ME/CFS recognition and advocacy, though undoubtedly full use of the two newer definitions will take time to be implemented. However, physicians and attorneys should make full use of the definitions when necessary and appropriate, in conjunction with the CDC definition.

Application of 2016 SSR 16-3p Social Security Ruling “Evaluation of Symptoms in Disability Claims” to ME-CFS Disability Claims.

SSR 16-3p was issued to instruct examiners and adjudicators on how a claimant’s symptoms should be evaluated in light of both objective medical evidence (medical signs and lab tests), and the entire record, including non-medical evidence. As ME-CFS symptoms are important in both diagnosis and their effect on a person’s ability to work, the Ruling would be applied to ME-CFS disability evaluation.

The Ruling and its application to the ME-CFS disability evaluation will be summarized here. The Ruling states: “We define a symptom as the individual’s own description of his or her physical or mental impairments… In determining disability all of the patient’s individual symptoms, including pain, and the extent to which the symptoms can reasonably be accepted as consistent with the objective medical and other evidence in the individual’s record.”

The Ruling requires that a person’s symptoms and their severity, persistence and disabling effects on the ability to work should be reasonably consistent with objective medical evidence – however: there are times when the person’s the intensity or nature of the person’s symptoms may not be entirely reflected in the objective medical evidence in the record. For instance, post-exertional malaise a person experiences may be greater than indicated by medical signs or lab tests.

When such an “inconsistency” occurs, examiners must seek to clarify medical evidence, but also must take into account evidence in the record from other sources which may help to verify or detract from the level of symptoms. Other sources of evidence include medical sources, non-medical sources, and other factors. Important information about symptoms recorded by medical sources and reported in the medical evidence may include, but is not limited to, the following:

• “Onset, description of the character and location of the symptoms, precipitating and aggravating factors, frequency and duration, change over a period of time (e.g., whether worsening, improving, or static), and daily activities. Very often, the individual has provided this information to the medical source, and the information may be compared with the individual's other statements in the case record. In addition, the evidence provided by a medical source may contain medical opinions about the individual's symptoms and their effects. Our adjudicators will consider such opinions by applying the factors in 20 CFR 404.1520c and 416.920c.[15]
• A longitudinal record of any treatment and its success or failure, including any side effects of medication.
• Other sources may provide information from which we may draw inferences and conclusions about an individual's statements that would be helpful to us in assessing the intensity, persistence, and limiting effects of symptoms. Examples of such sources include public and private agencies, other practitioners, educational personnel, non-medical sources such as family and friends, and agency personnel. We will consider any statements in the record noted by agency personnel who previously interviewed the individual, whether in person or by telephone. The adjudicator will consider any personal observations of the individual in terms of how consistent those observations are with the individual's statements about his or her symptoms as well as with all of the evidence in the file.”

“d. Factors to Consider in Evaluating the Intensity, Persistence, and Limiting Effects of an Individual's Symptoms: In addition to using all of the evidence to evaluate the intensity, persistence, and limiting effects of an individual's symptoms, we will also use the factors set forth in 20 CFR 404.1529(c)(3) and 416.929(c)(3). These factors include:

• 1. Daily activities;
• 2. The location, duration, frequency, and intensity of pain or other symptoms;
• 3. Factors that precipitate and aggravate the symptoms;
• 4. The type, dosage, effectiveness, and side effects of any medication an individual takes or has taken to alleviate pain or other symptoms;
• 5. Treatment, other than medication, an individual receives or has received for relief of pain or other symptoms;
• 6. Any measures other than treatment an individual uses or has used to relieve pain or other symptoms (e.g., lying flat on his or her back, standing for 15 to 20 minutes every hour, or sleeping on a board); and
• 7. Any other factors concerning an individual's functional limitations and restrictions due to pain or other symptoms.”

The Symptom Ruling also states that Social Security examiners may evaluate a claimant’s behavior in attempting to treat their symptoms: “We will consider an individual's attempts to seek medical treatment for symptoms and to follow treatment once it is prescribed when evaluating whether symptom intensity and persistence affect the ability to perform work-related activities for an adult or the ability to function independently, appropriately, and effectively in an age- appropriate manner for a child with a title XVI disability claim. Persistent attempts to obtain relief of symptoms, such as increasing dosages and changing medications, trying a variety of treatments, referrals to specialists, or changing treatment sources may be an indication that an individual's symptoms are a source of distress and may show that they are intense and persistent.[18]”

Lack of such “treatment behavior” may or may not affect Social Security’s evaluation of the presence and intensity of symptoms. For instance, failure to follow treatment programs or take medications may reflect negatively on a patient’s symptom report. On the other hand, the Ruling requires that possible reasons for such failure must be taken into account:

• An individual may have structured his or her activities to minimize symptoms to a tolerable level by avoiding physical activities or mental stressors that aggravate his or her symptoms.
• An individual may receive periodic treatment or evaluation for refills of medications because his or her symptoms have reached a plateau.
• An individual may not agree to take prescription medications because the side effects are less tolerable than the symptoms.
• An individual may not be able to afford treatment and may not have access to free or low-cost medical services.
• A medical source may have advised the individual that there is no further effective treatment to prescribe or recommend that would benefit the individual.
• An individual's symptoms may not be severe enough to prompt him or her to seek treatment, or the symptoms may be relieved with over the counter medications.
• An individual's religious beliefs may prohibit prescribed treatment.
• Due to various limitations (such as language or mental limitations), an individual may not understand the appropriate treatment for or the need for consistent treatment of his or her impairment.
• Due to a mental impairment (for example, individuals with mental impairments that affect judgment, reality testing, or orientation), an individual may not be aware that he or she has a disorder that requires treatment.

There are a number of important “take-aways” from the Symptom Ruling as it applies to ME-CFS. First an applicant, after MDI ME-CFS diagnosis, should gather as much objective medical evidence as possible to validate their symptoms and the severity, intensity and persistence of their symptoms. Besides any lab or other tests, medical signs might include: “The intensity, persistence, and limiting effects of many symptoms can be clinically observed and recorded in the medical evidence.” Examples would be low grade fevers, any breathing difficulties, rapid heartbeat, low grade fevers, difficulty in walking and abnormal tiredness, cognitive difficulties, and many other symptoms.

Second, the person should gather as much other evidence from medical and non-medical sources to corroborate their symptoms and the limitations caused by them.

All of this information should be communicated to one’s treating physicians who may be able to evaluate it for his or her disability medical report. All of the documentation should also be submitted to Social Security by the various non-medical sources. The claimant should also, as much as possible be consistent in their report of symptoms, even if they vary. If the claimant must appeal, his or her attorney should be aware of the symptom Ruling. ME-CFS is an MDI that requires a greater evaluation of symptoms than many other illnesses.