How to Establish a Diagnosis of Chronic Fatigue Syndrome

Artwork: Elizabeth D’Angelo

The Social Security ruling on Chronic Fatigue Syndrome lists some specific steps for establishing a diagnosis.

These steps are not a requirement (you can get approved without them), but they may be helpful to your case.

These steps are already included in the RFC form for Chronic Fatigue Syndrome. So, if your doctor fills out this function form and her answers match this ruling, perfect! You don’t need to do anything else here.

If your doc is not filling out a function form, then it may help your case if you can talk with your doctor and see if there is another way to get this information into your records.

If you would like to print a copy of this to bring to your doctor here is a printable copy of the Social Security Ruling on Chronic Fatigue Syndrome Diagnostic Criteria

Learn more about how to get a diagnosis, what doctor to go to, and how to work with your doctor: How to Get Diagnosed with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome

# 1 – Excluding other illnesses

“A physician should make a diagnosis of CFS only after alternative medical and psychiatric causes of chronic fatiguing illness have been excluded.”

Notes: The ruling does not specify what other illnesses need to be excluded, so if your doctor has given you any kind of testing for any other conditions, this could be helpful.

# 2 – Presence of Fatigue

“The hallmark of CFS is the presence of clinically evaluated, persistent or relapsing chronic fatigue.” According to the ruling, the chronic fatigue should have these characteristics:

  1. Is of new or definite onset (that is, has not been lifelong);
  2. Cannot be explained by another physical or mental disorder;
  3. Is not the result of ongoing exertion;
  4. Is not substantially alleviated by rest;
  5. Results in substantial reduction in previous levels of occupational, educational, social, or personal activities.

#3 -Diagnostic Symptoms

The ruling lists diagnostic symptoms as “the concurrence of 4 or more specific symptoms that persisted or recurred during 6 or more consecutive months of illness and did not pre-date the fatigue”

  1. Postexertional malaise lasting more than 24 hours (which may be the most common secondary symptom)
  2. Self-reported impairment(s) in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities
  3. Sore throat
  4. Tender cervical or axillary lymph nodes
  5. Muscle pain
  6. Multi-joint pain without joint swelling or redness
  7. Headaches of a new type, pattern, or severity
  8. Waking unrefreshed

Notes: In the ideal world, you would regularly see a doctor for at least six months. If helpful, you can print a copy of the Medical Signs & Symptoms to document for six months.

Other Symptoms  (Not Required)

According to the ruling, a person with CFS may exhibit some of these symptoms as well. These symptoms are not required to establish a diagnosis. However, if you have any of these symptoms, it can be helpful to have these documented in your medical records.

Muscle weakness; Disturbed sleep patterns (for example, insomnia, prolonged sleeping, frequent awakenings, or vivid dreams or nightmares); Visual difficulties (for example, trouble focusing, impaired depth perception, severe photosensitivity, or eye pain); Orthostatic intolerance (for example, lightheadedness, fainting, dizziness, or increased fatigue with prolonged standing); Respiratory difficulties (for example, labored breathing or sudden breathlessness); Cardiovascular abnormalities (for example, palpitations with or without cardiac arrhythmias); Gastrointestinal discomfort (for example, nausea, bloating, or abdominal pain); Urinary or bladder problems (for example, urinary frequency, nocturia, dysuria, or pain in the bladder region)

Co-occurring Conditions (Not Required)

According to the ruling, a person with CFS may have some co-occurring conditions. These conditions are not required to establish a diagnosis, however, if you have any of these conditions, it can be helpful to have these documented in your medical records.

Fibromyalgia (FM); myofascial pain syndrome; temporomandibular joint syndrome (TMJ); irritable bowel syndrome; interstitial cystitis; Raynaud’s phenomenon; migraines; chronic lymphocytic thyroiditisor; Sjogren’s syndrome; New allergies or sensitivities to foods, odors, chemicals, medications, noise, vibrations, or touch; The loss of thermostatic stability (for example, chills, night sweats, or intolerance of extreme temperatures)

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