How to Collect Medical Evidence for Chronic Fatigue Syndrome

Artwork: Elizabeth D’Angelo

It will help your disability application a great deal if you can collect at least one piece of medical evidence for each condition that you have.

Medical evidence is something that shows your illness exists in the world.

The Social Security ruling on Chronic Fatigue Syndrome includes a list of medical evidence that can help your case. In the ruling, they call this “establishing a Medically Determined Impairment.”

Many people with ME or Chronic fatigue Syndrome lose their minds with worry trying to get more and more tests or trying to get the “right” test to prove they are disabled.

It may be helpful to keep in mind that there are many parts of the process and getting tests is just one part. You can’t get approved off of tests alone. Please don’t lose your mind (or your pocketbook).

You are not required to have a million pieces of medical evidence, but you do want at least one with outcomes showing an impairment. For Chronic Fatigue Syndrome, one or more of the following tests may help establish a Medically Determined Impairment:

  • An abnormal magnetic resonance imaging (MRI) brain scan (Note: Some people get other types of brain scans: QEEG or SPECT or PET scans)
  • Neurally mediated hypotension – through other forms of testing. (Note: the ruling does not specify what this means. One possible test could be a NASA lean test)
  • An abnormal exercise stress test (Note: the ruling does not specify what type of stress test. One test some people use is a CPET)
  • Abnormal sleep studies appropriately evaluated
  • Psychological testing showing neurocognitive impairment (Note: one type of testing some people use is neuropsychological testing)
  • Medical findings showing neurological impairment or other mental problems
  • 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 (Note: Some people have indicated that the numbers listed in this ruling are very high. If you have an abnormal EBV test that doesn’t meet these numbers, it is still worth noting and may be helpful).

Social Security will also accept medical signs as a way to establish a Medically Determined Impairment.

  • Physical exam by a doctor finding palpably swollen or tender lymph nodes, documented over 6 consecutive months
  • Physical exam by a doctor finding nonexudative pharyngitis, documented over 6 consecutive months (Note: This means throat inflammation without mucous)
  • Physical exam by a doctor finding persistent, reproducible muscle tenderness on repeated examinations, including the presence of positive tender points, documented over 6 consecutive months (Note: Tender points may also be called trigger points. This is often checked by doctors or rheumatologists who are checking for Fibromyalgia)
  • Other medical signs. For example: Frequent viral infections with prolonged recovery; Sinusitis; Ataxia; Extreme pallor or Pronounced weight change.
  • Any other medical signs consistent with medically accepted clinical practice


Tips for Testing for Chronic Fatigue Syndrome

🌸 Luckily, this ruling recognizes that many people with CFS or ME test show normal results on tests. The ruling include this sentence: “Standard laboratory test results in the normal range are characteristic for many people with Chronic Fatigue Syndrome, and they should not be relied upon to the exclusion of all other clinical evidence”

🌸 Which tests helped the most for disability applications? Good question. We took a survey.  What medical test was the most helpful for your disability approval?

🌸 It is extremely important that you do not rely on the doctors hired by Social Security. If at all possible, select your own doctor and arrange your own testing.

🌸 If your test results come back normal, it is still possible to get approved. It is great if you can take steps to make the rest of your application strong. Learn more: What Do I Do When My Lab Tests All Say Nothing is Wrong?

🌸 Many people with ME or CFS find that documenting mental health can be a great help to their case. This does not require testing. How to Include Mental Health

🌸 How many tests should you get? Are your test results “good enough”? How Many Medical Tests Do I Need?

🌸 Collecting medical evidence is just one part of the process. Learn more about The Social Security ruling on Chronic Fatigue Syndrome

🌸 If you cannot afford testing, you may be able to get some free testing by enrolling in a Vocational Rehabilitation agency or program.

🌸 It is a huge help if you can document other conditions. If you experience depression, anxiety, Lyme, POTS, fibromylagia or any related conditions, please take a look at: How to Get Medical Tests to Help Your Disability Application

Updated October 2017. Please comment below with suggestions or ideas. 

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