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V. How do we find a person disabled on an MDI of CFS?

There is a sequential process in making a finding on whether a person with ME/CFS is disabled. “In this process, once we establish a medically-determinable impairment of CFS, we must establish the severity of the impairment(s). We determine the severity of the impairment(s) based on the totality of medical signs, symptoms, and laboratory findings, and the effects of the impairments, including any related symptoms, on the person’s ability to function.”

The five-step sequential evaluation process

Here is a summary of the five-step sequential evaluation process:

Step 1: “We consider the person's work activity. If a person with CFS is doing substantial gainful activity, we find that he or she is not disabled.”

Comment: “Substantial gainful activity” in relation to CFS is ill-defined. Based on our experience with scores of CFS claims, and advice from a number of experienced attorneys, any patient working for an even limited number of hours at the time of application risks a finding of performing substantial gainful activity. Limited part-time hours, say 8-10 hours a week may or may not be considered substantial gainful activity depending on the type of work and, to an extent, the claimant’s past work experience. Therefore, while applying, it is generally best not to be employed, based on our experience. If a person must work, it should be generally less than 8 hours per week, and at a job that requires very little effort. Still, to do so, may jeopardize a disability application. After an application is approved, there is some greater allowance for work.

Step 2: There must be a finding that the person has CFS (as well as any other conditions) as a medically-determinable impairment (MDI) which would reasonable cause a person’s symptoms. Moreover, This step also involves determining whether the person’s impairment is “severe”.

In this step there is an evaluation of the intensity and persistence of the person’s symptoms in order to determine the “extent to which they limit the person’s capacity for work… Once a finding is made that the individual’s CFS meets the duration requirement [see above], a determination is made whether the fatigue, pain, neurocognitive symptoms, or other symptoms cause a limitation or restriction, and they have more than a minimal effect on a person’s ability to perform basic work activities, we must find that the person has a ‘severe’ impairment.”

Step 3: There is a Social Security listing of medical impairments that are considered necessarily severe. ME/CFS in itself is not considered necessarily severe and is not on the Listing of Impairments. However in each ME/CFS case the impairment may be compared to a Listing to determine if there is an equivalency of severity. “Further in cases in which a person has psychological manifestations related to CFS, we must consider whether the person’s impairment meets or equals the severity of any impairment in the mental disorders listing.”

This regulation has in the past often been used by attorneys to take the patient “off the grid” (see below) in order to make acceptance of the ME/CFS claim less difficult – in order to create an “equivalency”. This approach can avoid having to go to steps 4 and 5 of an evaluation of the person’s residual functional capacity (RFC). However, a finding of equivalency in cases of ME/CFS is infrequent and most claims “advance” to steps 4 and 5 to determine individual functional capacity.

Steps 4 and 5: When CFS does demonstrate a Listing equivalence there must be an assessment of the person’s residual functional capacity – that is their ability to work. Ability to work means the person is unable to do any work, even part-time sedentary work on a predictable basis. In other words, if a person could do 4 hours today and 4 hours tomorrow of light work, but then would be sick for a week or more, then they could not work on a predictable basis and would be considered disabled.

“In assessing RFC, we must consider all the person’s impairment related symptoms and how such symptoms may affect functional capacities…we must determine that the person's impairment(s) precludes the performance of past relevant work (or if there was no past relevant work). If we determine that the person's impairment precludes performance of past relevant work, we must make a finding about the person's ability to perform other work. We must apply the usual vocational considerations in determining the person's ability to perform other work.”

Also, in attempting to evaluate the functionally limiting effects of symptoms: “…we consider all the evidence in the case record, including the person’s daily activities; medications or other treatments the person uses, or has used, to alleviate symptoms; the nature and frequency of the person’s attempts to obtain medical treatment for symptoms…” Hence the patient and treating physician(s) should document these types of evidence in the continuing medical record.

The Ruling also notes: That “statements by other people about the person’s symptoms…” may be used. These could be statements by other types of professionals or work supervisors, etc.

Therefore, in preparing medical documentation, the person’s treating physician(s) must enter into their treatment notes and disability reports, the chronicity and severity of the patient’s symptoms over time, as well as how the symptoms may objectively limit the person’s functionality and ability to work.

The documentation of a person’s residual functional capacity is just as critical as the documentation of ME/CFS diagnosis and severity. It is recommended that the physician or other professional assess and document the person’s lack of capacity to carry-out activities of daily living (ADL), their lack of ability to carry-out basic work functions: deficits of concentration, memory, sustaining physical and cognitive activity, carrying out basic physical activities: such as walking, standing, carrying more than a very light weight object, etc.

Continuing Disability Reviews

“In those cases in which we find that a person is disabled based on CFS, we will schedule an appropriate continuing disability review. For this review, we take into account relevant individual case facts, such as the combined severity of other chronic or static impairments and the person's vocational factors.”

In our experience, Disability Reviews should entail complete documentation of the illness, especially for the 12 months preceding the Review, but also for the period since benefit approval or a preceding review. Please see the Appendix VI Disability Reviews in the Massachusetts CFIDS/ME & FM Association Disability booklet.

This ends the review and explanation of the new Ruling.