How to Collect Medical Evidence for Chronic Fatigue Syndrome

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Artwork: Elizabeth D’Angelo

It will help your application a great deal if you can collect at least one piece of medical evidence.

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.”

I’ve seen a lot of people with 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. I want to reassure you that that is not how Social Security Disability works. 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. 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?

🌸 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: How Peony Won Her Case Despite “Normal” Test Results and How Jasmine Got Approved Despite “Normal” Test Results

🌸 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

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

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