What Medical Tests Should I Get While Applying for Disability for Chronic Fatigue Syndrome?

Art: Robin Mead

Social Security has a special ruling for Chronic Fatigue Syndrome. You can use it! It can help! Here’s where you can find out more: How to Use the Social Security Ruling for Chronic Fatigue Syndrome

A key part of the ruling is “medical evidence.” Medical evidence includes medical tests, as well as clinical signs and observations (things your doctor observes or finds during examination).

This ruling is not a requirement. You do not need to have everything here to get approved. In fact, we’ve never heard from anyone who had everything in the ruling. The ruling is a tool you can use that may assist you in strengthening your case.

Medical evidence listed in the ruling:

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MRIs

Ruling: An abnormal magnetic resonance imaging (MRI) brain scan.

Tip: MRIs may be useful though readers report these do not always show results. Some of our readers report that “Functional MRIs” were more helpful.

Tip: There are several different types of brain scans people have found helpful in documenting ME and related conditions: SPECT and xenon SPECT scans of the brain, PET scans of the brain and EEG/QEEG brain maps. Read more about brain scans for ME: short explanations or long explanations.

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Neurally mediated hypotension

Ruling: “Neurally mediated hypotension as shown by tilt table testing or another clinically accepted form of testing”

Tip: This is a blood pressure measurement test that is also frequently used in the treatment and diagnosis of POTS. Learn more about: Tilt Table testing.

Tip: The ruling does not specify what other forms of testing they are referring to. One possible test could be a NASA lean test which you can ask your doctor or nurse to do with you. Some people call this the “poor man’s tilt table test”

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Exercise Stress Test

Ruling: “Abnormal exercise stress test appropriately evaluated and consistent with the other evidence in the case record”

Tip: The ruling includes exercise stress test as an example of other possible laboratory findings. It does not specify what type of stress test.

Tip: One test that is highly regarded is the Two Day CPET Test. This test is frequently used by people applying for disability through an employers insurance. There are some pros and cons to this type or testing.

Tip: If you plan to engage in any kind of exercise testing, please take some time to learn more on this topic. You may find this page helpful: Potential Dangers of Exercise or Activity for ME and Chronic Fatigue Syndrome

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Sleep Study

Ruling: “Abnormal sleep studies appropriately evaluated and consistent with the other evidence in the case record”

Tip: The ruling includes sleepy study as an example of other possible laboratory findings. It does not specify what type of study.

Tip:We have not heard from any readers using sleep studies to document Chronic Fatigue Syndrome. However, if you do have a sleep study with abnormal outcomes, it’s possible this might help your case.

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Mental Limitations

Ruling: “Mental limitations. 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. Ongoing deficits in these areas [that] have been documented by mental status examination or psychological testing. Medical signs or laboratory findings [that] suggest a persistent neurological impairment or other mental problems”

Tip: Your doctor’s ongoing notes in your medical records can be very important in documenting this area. Some primary care doctors make notes about your mental status at every appointment. Acacia’s story: How I Got Approved Through Clinical Observations

Tip: If you have any struggles with depression, anxiety or other mental health issues, please read: How Mental Health Can Impact Your Disability Case

Tip: If you have a mental health diagnosis, ongoing records from a psychiatrist or psychologist (not counselor/therapist) can be a big help as well: How to Document Mental Health

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Psychological Testing

The ruling does not specify what type of psychological testing they are referring to.  Neuropsychological testing is the number one most helpful test reported by our readers.

Tip: If your illness or medication side effects causes difficulty with memory, focus or concentration, you may find it helpful to get neuropsychological testing

Tip: If you are looking: How to Find a Neuropsychologist (and how not to)

Tip: While neuropsychological testing can be very helpful for Social Security, it can sometimes cause issues for LTD (employer disability): How Neuropsychological Testing Can Help (or hurt)

Tip: Free Samples: Sample Neuropsychological Report for CFS & Fibromyalgia

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Epstein-Barr virus Test

Ruling: 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

Tip: Some readers have indicated that the numbers listed in this ruling are higher than typically used by ME specialists. If you have an abnormal EBV test that doesn’t meet these numbers, it may still be helpful.

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Other Findings and Tests

Ruling: “Any other laboratory findings and tests consistent with medically-accepted clinical practice”

Tip: This leaves a lot of flexibility. Here’s where you can find information on other laboratory findings and tests for ME

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Medical Signs

Social Security will also accept medical signs as a way to establish a Medically Determined Impairment. It’s important to not that telling your doctor that you have these signs will not count. It is only considered a medical sign if your doctor feels or observes it for themselves.

Ruling: Physical exam by a doctor finding palpably swollen or tender lymph nodes, documented over 6 consecutive months

Ruling: Physical exam by a doctor finding nonexudative pharyngitis, documented over 6 consecutive months. Note: This means throat inflammation without mucous.

Ruling: 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.

Ruling: Other medical signs. For example: Frequent viral infections with prolonged recovery; Sinusitis; Ataxia; Extreme pallor or Pronounced weight change.

Ruling: Any other medical signs consistent with medically accepted clinical practice

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Tips for Testing 

🌸 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?

🌸 While we were at it we also asked: What doctor 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?

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

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

🌷One of our readers created this guide for physical and occupational therapists: Documenting disability for patients with ME/CFS: A guide for PT, OT, and SLP

🌸 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

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

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Thanks for Reading

🌷 This page is part of the free online guide: The Sleepy Girl Guide to Social Security Disability 

🌷 Art on this page by Robin Mead and Elizabeth D’Angelo.

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