Donald E. Bartholomew, JD, MS, Attorney  
( Maj,USA,Ret. & prior Navy)
Protecting Clients' Rights Since 1983
  1179 Hilltop Drive, Redding, CA 96003   Tel. (530)246-1621
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ChronicFatigueSyndrome

Chronic fatigue syndrome (CFS), is a devastating and complex disorder characterized by overwhelming fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. People with CFS most often function at a significantly lower level of activity than they were capable of before the onset of illness.

In addition to these key defining characteristics, patients report various nonspecific symptoms, including weakness, muscle pain, impaired memory and/or mental concentration, insomnia, and post-exertional fatigue lasting more than 24 hours. In some cases, CFS can persist for years.

The cause or causes of CFS have not been identified and no specific diagnostic tests are available. Moreover, since many illnesses have incapacitating fatigue as a symptom, care must be taken to exclude other known and often treatable conditions before a diagnosis of CFS is made.

More than one million Americans have CFS. This illness strikes more people in the United States than multiple sclerosis, lupus, lung cancer or ovarian cancer.

Researchers continue to explore possible causes and risk factors for CFS. Many questions remain, but there are some characteristics that may help indicate who is most at risk for CFS:

  • CFS occurs four times more frequently in women than in men, although people of either gender can develop the disease.
  • The illness occurs most often in people in their 40s and 50s, but people of all ages can get CFS.
  • CFS is less common in children than in adults. Studies suggest that CFS is more prevalent in adolescents than in younger children.

Criteria for Diagnosis of "Chronic Fatigue Syndrome"

Your clinician should consider a diagnosis of CFS  if  these two criteria are met:

  1. Unexplained, persistent fatigue that's not due to ongoing exertion, isn't substantially relieved by rest, is of new onset (not lifelong) and results in a significant reduction in previous levels of activity.       -   AND  - 
  2. Four or more of the following symptoms are present for six months or more:
    • Impaired memory or concentration
    • Postexertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity)
    • Unrefreshing sleep
    • Muscle pain
    • Multijoint pain without swelling or redness
    • Headaches of a new type or severity
    • Sore throat that's frequent or recurring
    • Tender cervical or axillary lymph nodes
Introduction

Managing chronic fatigue syndrome can be as complex as the illness itself. There is no cure, no prescription drugs have been developed specifically for CFS, and symptoms vary considerably over time. These factors complicate the treatment process and require patients and health care professionals to constantly monitor and frequently revise treatment strategies.

One key to managing CFS is working with health care professionals to create an individualized treatment program. This program should be based on a combination of therapies, for example traditional and alternative, which address symptoms, activity management and coping techniques.

Identification of a CFS patient’s greatest problem is most important since the illness affects people differently. Relief of symptoms is the primary treatment goal. Expecting a CFS patient to feel "normal" (for example, a return to usual activities) should not be the immediate goal because trying to reach that goal may aggravate the illness. CFS is a complicated illness and therefore may require input from a variety of medical professionals. Primary care providers can develop effective treatment plans based on their experience in treating other illnesses.

Coping with CFS  -  Living with chronic fatigue syndrome can be difficult. Like other debilitating chronic illnesses, CFS can have a devastating impact on daily life, requiring patients to make significant lifestyle changes and adapt to a series of new limitations.

Common Difficulties

Common difficulties for CFS patients include problems coping with:

  • the changing and unpredictable symptoms
  • a decrease in stamina that interferes with daily living activities
  • memory and concentration problems that seriously impact work or school performance
  • loss of independence, livelihood and economic security
  • alterations in relationships with family and friends
  • worries about raising children
  • concerns about the potential impact of decreased sexual activity on intimate relationships

Feelings of anger, guilt, anxiety, isolation and abandonment are common in CFS patients. While it's normal to have such feelings, unresolved emotions and stress can make symptoms worse, interfere with pharmacological therapies and make recovery harder.

Treatment Options  -  There are many different types of treatment and management tools available for Chronic Fatigue Syndrome. These include:
  • Professional Counseling
  • Cognitive Behavioral Therapy (CBT)
  • Graded Exercise Therapy (GET)
  • Symptomatic Treatment
  • Alternative Therapies
  • Support Groups
  • Pharmacologic Therapy
  • Sleep Hygiene
  • Pain Therapy
  • Orthostatic Instability Treatment
  • Antidepressants
Diagnostic Tests for CFS

Tests for Routine Diagnosis of CFS

While the number and type of tests performed may vary from physician to physician, the following tests constitute a typical standard battery to exclude other causes of fatiguing illness: alanine aminotransferase (ALT), albumin, alkaline phosphatase (ALP), blood urea nitrogen (BUN), calcium, complete blood count, creatinine, electrolytes, erythrocyte sedimentation rate (ESR), globulin, glucose, phosphorus, thyroid stimulating hormone (TSH), total protein, transferrin saturation, and urinalysis. Further testing may be required to confirm a diagnosis for illness other than CFS. For example, if a patient has low levels of serum albumin together with an above-normal result for the blood urea nitrogen test, kidney disease would be suspected. The physician may choose to repeat the relevant tests and possibly add new ones aimed specifically at diagnosing kidney disease. If autoimmune disease is suspected on the basis of initial testing and physical examination, the physician may request additional tests, such as for antinuclear antibodies.

Psychological/Neuropsychological Testing

In some individuals it may be beneficial to assess the impact of fatiguing illness on certain cognitive or reasoning skills, e.g., concentration, memory, and organization. This may be particularly relevant in children and adolescents, where academic attendance, performance, and specific educational needs should be addressed. Personality assessment may assist in determining coping abilities and whether there is a co-existing affective disorder requiring treatment.

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Centers For Disease Control :  website -  www.cdc.gov

The Social Security Administration (SSA) issued policy interpretation ruling SSR 99-2p to state and clarify their policy for evaluating disability in cases of chronic fatigue syndrome (CFS). We encourage you to see the full document at the Social Security Administration's websiteExternal Web Site Icon but have provided an overview of the policy. Although this information was summarized in 1999, it still constitutes the working guidelines followed by the SSA.

Social Security Ruling 99-2p states that CFS can be a disabling condition and people who meet SSA’s criteria for disability are eligible for benefits. SSA’s general definition of disability is: "the inability to engage in any substantial gainful activity by reason of any medically determinable physical or mental impairment (or combination of impairments) which … has lasted or can be expected to last for a continuous period of not less than 12 months." However, the agency notes that "disability may not be established on the basis of an individual’s statement of symptoms alone." Importantly, the SSA states that "CFS constitutes a medically determinable impairment when accompanied by medical signs or laboratory findings."

Understanding Policy SSR 99-2p if you are a CFS Patient or CFS Healthcare Provider

The Social Security Administration specifies that CFS patients can obtain disability when medical signs and laboratory findings establish a medically determinable impairment. The SSA document does not follow diagnostic criteria for CFS. This means that the medical signs and laboratory findings listed as examples for documenting a medical impairment may not be needed for diagnosis of CFS. It also means that:

  1. If a CFS patient has some of the medical signs or laboratory findings listed in Ruling SSR 99-2p, then these results can be used to support disability claims, and
  2. If a CFS patient does not have the listed examples under the SSA categories of medical signs and laboratory findings, then other measurable findings such as sleep abnormalities, diminished physical or cognitive capabilities, can be used to support documentation of the illness.
  3. Once a medically determinable impairment is documented, patients need to show that they are functionally impaired for not less than 12 months.

NOTE: Policy SSR 99-2p provides examples of medical signs and laboratory findings but importantly notes that these examples ARE NOT all-inclusive. Listed below are the examples provided by SSA. However, CFS patients are encouraged to speak to their healthcare provider about CFS and disability as these examples do not include every medical symptom or laboratory finding. Disability is best determined on an individual case basis and on the medical, clinical, and laboratory records of the patient.

For CFS patients the process of applying for disability can be long and frustrating. In some cases a patient or family might want get an independent third party representative to help guide them through the process. However, working closely with your healthcare provider is still the best way to file a disability claim.

Examples of Medical Signs that Establish the Existence of a Medically Determinable Impairment in Some Cases of CFS

For purposes of Social Security disability evaluation, one or more of the following medical signs clinically documented over a period of at least 6 consecutive months establishes the existence of a medically determinable impairment for some individuals with CFS:

  • Palpably swollen or tender lymph nodes on physical examination
  • Nonexudative pharyngitis
  • Persistent, reproducible muscle tenderness on repeated examinations
  • Any other medical signs consistent with medically accepted clinical practice and consistent with the other evidence in the case record.

Examples of Laboratory Findings that Establish the Existence of a Medically Determinable Impairment in Some Cases of CFS

At this time, there are no specific laboratory findings that are widely accepted as being associated with CFS. However, the absence of a definitive test does not preclude reliance upon certain laboratory findings to establish the existence of a medically determinable impairment in some persons with CFS.

  • Any laboratory findings that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record. For example, an abnormal exercise stress test or abnormal sleep studies, appropriately evaluated and consistent with the other evidence in the case record.
  • Neurally mediated hypotension as shown by tilt tables testing or another clinically accepted form of testing
  • An elevated antibody titer to Epstein-Barr virus (EBV) capsid antigen equal to or greater than 1:5120 or to early antigen equal to or greater than 1:640
  • An abnormal magnetic resonance imaging (MRI) brain scan

Providing Medical Evidence to the Social Security Administration for Individuals with Chronic Fatigue Syndrome - FACT SHEET

The Social Security Administration has a Fact Sheet for healthcare professionals that guides and identifies the type of information needed for the SSA to make decisions on awarding disability to people with CFS. We have provided several tips from this Fact Sheet but encourage you to go directly to the SSA CFS Fact SheetExternal Web Site Icon. Healthcare professionals can assist their CFS patients in the disability process by submitting through and complete records.

The SSA asks healthcare professionals for the following types of information in order to determine the existence of CFS, its severity, and duration of the person's impairment(s). Reports from healthcare professional should include:

  1. A thorough medical history. Detailed medical notes with longitudinal records are very helpful.
  2. Clinical and laboratory findings (both positive and negative)
  3. Copies of laboratory results should be provided
  4. Results of any mental status examinations and psychometric testing (cognitive function)
  5. A statement of your opinion regarding work-related activities that the patient can still do despite impairment. For example, a statement describing the patient's medical status since the onset of CFS.
  6. A statement about a patient's functional limitation is important. Physical limitations can be measured in standardized physical therapy or occupational medicine settings.

Disability Evaluation Under Social Security (Blue Book - September 2008)

The Social Security Administration has prepared the Disability "Evaluation Under Social Security"External Web Site Icon (known as the Blue Book) to help physicians and healthcare professionals understand how disability programs are administered. The book gives detailed guidance on what types of information physicians can provide the SSA to facilitate timely decisions.

Centers for Disease Control and Prevention, 1600 Clifton Rd,  Atlanta, GA 30333

Disability and Chronic Fatigue Syndrome
USA.gov: The U.S. Government's Official Web PortalDepartment of Health and Human Services

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For Expert Licensed Attorney representation in YOUR Social Security Disability claim or appeal, Call
Don Bartholomew, JD,MS, Attorney
1179 Hilltop Drive, Redding, CA 96003
(530) 246-1621
Protecting Clients' Legal Rights Since 1983