« Chronic Fatigue Syndrome and Disability | Main

Disability Evaluation Process for Chronic Fatigue Syndrome

This is the second part of a two-part series of articles summarizing Social Security Ruling "SSR 99-2p: Policy Interpretation Ruling Titles II and XVI: Evaluating Cases Involving Chronic Fatigue Syndrome (CFS)."

What follows is a detailed description of how disability claims are evaluated under Social Security’s rules. It includes concepts from the Process Unification rulings, which are difficult to grasp - one reason why SSA tends to inconsistently apply these rulings. The discussion focuses on claims for CFS, but the general idea is the same no matter the condition.

At the end of this article, I give you a nice summary of how to present a strong case for disability due to CFS.

If you are not familiar with the rules and regulations Social Security uses to evaluate disability claims, you should first read all the modules found in the “Information for Disability Applicants” section of this web site. This is because if you read and understand those modules first, you will better understand this article. Otherwise, you may find the following information confusing. I attempted to simplify the descriptions and terms used, but don’t be upset if you still don’t understand it all. The rules and regulations used by Social Security’s disability program are very complex.

Sequential evaluation process

Claims involving CFS are decided using the sequential evaluation process, just as for any other impairment. Once a medically determinable impairment has been found to exist, the severity of the impairment must be established. The severity of an individual's impairment is determined based on the totality of medical signs, symptoms, and laboratory findings, and the effects of the impairment, including any related symptoms, on the individual's ability to function.

Also, several other disorders (including, but not limited to, Fibromyalgia Syndrome (FMS), multiple chemical sensitivity, and Gulf War Syndrome, various forms of depression, and some neurological and psychological disorders) may share symptoms and other similar findings to those of CFS. When there is evidence of another disorder that may adequately explain the individual's symptoms, it may be necessary to pursue additional medical or other development.

Step 2 of the sequential evaluation process

When an individual with CFS has a medically determinable impairment, the decision-maker must consider that the individual has an impairment that could reasonably be expected to produce the individual’s symptoms associated with CFS, and evaluate the intensity and persistence of the symptoms.

This concept is important because it automatically requires the decision-maker to acknowledge that CFS established as a medically determinable impairment can reasonably be expected to produce the symptoms associated with CFS. (Take note all you claimant representatives!)

For example, if an individual with CFS has a medically determinable impairment, and the individual alleges fatigue, pain, symptoms of neurocognitive problems, or other symptoms consistent with CFS, these symptoms must be considered in deciding whether the individual's impairment is "severe" at step 2 of the sequential evaluation process and at any later steps.

If fatigue, pain, neurocognitive symptoms, or other symptoms are found to have more than a minimal effect on an individual's ability to perform basic work activities, the decision-maker must find that the individual has a "severe" impairment.

Step 3 of the sequential evaluation process

When an individual is found to have a severe impairment, the decision-maker must next consider whether the severity of the individual's impairment closely matches a listing in Social Security’s “Listing of Impairments.” Since CFS is not a listed impairment, an individual with CFS alone cannot be found to have an impairment that meets a listing; however, the findings in each case should be compared to any pertinent listing to decide whether CFS equals a listing.

When individuals with CFS have psychological manifestations related to CFS, decision-makers should consider whether the individual's mental impairment meets or equals the severity of any impairment in the mental disorders listings.

Steps 4 and 5 of the sequential evaluation process

For impairments that do not meet or equal the severity of a listing, decision-makers must assess a residual functional capacity (RFC), and then proceed to the fourth and, if necessary, the fifth step of the sequential evaluation process. In assessing RFC, all of the individual's symptoms must be considered in deciding how such symptoms may affect functional abilities.

If it is decided that CFS prevents the performance of past relevant work (or if there was no past relevant work), a finding must be made about the individual's ability to perform other work.

Many individuals with CFS are "younger individuals," ages 18 through 49. Age, education, and work experience are not usually considered to significantly limit the ability of individuals under age 50 to make an adjustment to other work, including unskilled sedentary work. However, a finding of disabled is not precluded for those individuals under age 50 who do not meet all of the criteria of a specific rule and who do not have the ability to perform a full range of sedentary work. The conclusion about whether such individuals are disabled will depend primarily on the nature and extent of their functional limitations or restrictions.

Whether the individual will be able to perform other work requires judgment regarding the type and extent of the individual's limitations or restrictions, and the extent of the erosion of the occupational base for sedentary work.

Duration

The medical signs and symptoms of CFS fluctuate in frequency and severity and often continue over a period of many months or years. Thus, appropriate documentation should include a longitudinal clinical record of at least 12 months prior to the date of application, unless the alleged onset of CFS occurred less than 12 months in the past, or unless a fully favorable decision can be made without additional documentation.

The record should contain detailed medical observations, treatment, the individual's response to treatment, and a detailed description of how CFS limits the individual's ability to function over time.

When the alleged onset of disability secondary to CFS occurred less than 12 months before a disability decision is made, the decision-maker must evaluate the medical evidence and project the degree of impairment severity that is likely to exist at the end of 12 months.

Information about treatment and response to treatment as well as any medical source opinions about the individual's prognosis at the end of 12 months are helpful in deciding whether CFS is expected to be of disabling severity for at least 12 consecutive months.

Continuing Disability Reviews

In those cases in which an individual is found to be disabled based on CFS, but medical improvement is expected, a “continuing disability review” will be scheduled. This takes into account individual case facts, such as the combined severity of other impairments and the individual's vocational (work) factors.

Documentation

As with all claims for disability, documentation of medical signs or laboratory findings in cases involving CFS is critical to establishing the presence of a medically determinable impairment. In cases in which CFS is alleged, longitudinal clinical records reflecting ongoing medical evaluation and treatment from the individual's medical sources, especially treating sources, are extremely helpful in documenting the presence of any medical signs or laboratory findings, and the individual's functional status over time.

Every reasonable effort should be made to secure all available, relevant evidence in cases involving CFS to ensure appropriate and thorough evaluation. Generally, evidence for the 12-month period preceding the month of application should be requested unless there is reason to believe that development of an earlier period is necessary, or unless the alleged onset of disability is less than 12 months before the date of the application.

Recontacting Medical Sources/Consultative Examinations

If the decision-maker finds that medical evidence is inadequate to decide whether the individual is disabled, he or she must first recontact the individual's treating or other medical sources to determine whether the additional information needed is readily available.

Only after the decision-maker determines that the information needed is not readily available from the individual's health care providers, or that the necessary information or clarification cannot be sought from the individual's health care providers, should the decision-maker arrange for a consultative examination.

Resolution of Conflicts

Conflicting evidence in the medical record is not unusual in cases of CFS due to the complicated diagnostic process involved in these cases. SSA must attempt to contact treating or other medical sources to resolve any such conflicts.

Medical opinions from treating sources about the nature and severity of an individual's impairment must be considered, and may be entitled to controlling weight. “Controlling weight” means that SSA must adopt the opinion of the treating source regarding his or her patient’s level of function.

Controlling weight cannot be given to medical source opinions reserved to the Commissioner of Social Security, such as "totally disabled" or "unable to work."

If SSA finds that a treating source's medical opinion about the nature and severity of an individual's impairment is well-supported by medically acceptable clinical and laboratory diagnostic techniques; and is not inconsistent with the other substantial evidence in the case record, the decision-maker must give it controlling weight.

Assessing Credibility

If the existence of CFS as a medically determinable impairment that could reasonably be expected to produce the symptoms has been established, but an individual's statements about the intensity, persistence, or functionally limiting effects of symptoms are not substantiated by objective medical evidence, the decision-maker must consider all of the evidence in the case record, including any statements by the individual and other persons concerning the individual's symptoms.

The decision-maker must then make a finding on the credibility of the individual's statements about symptoms and their effects on function. When additional information is needed to assess the credibility of the individual's statements about symptoms and their effects, the decision-maker must make every reasonable effort to obtain available information that could shed light on the credibility of the individual's statements.

Treating and other medical sources

In evaluating credibility, the decision-maker should ask the treating or other medical sources to provide information about the extent and duration of an individual's impairment, including observations and opinions about how well the individual is able to function, the effects of any treatment, including side effects, and how long the impairment is expected to limit the individual's ability to function.

Opinions from an individual's medical sources, especially treating sources, concerning the effects of CFS on the individual's ability to function in a sustained manner in performing work activities or in performing activities of daily living are important in enabling decision-makers to draw conclusions about the severity of the impairment and the individual's RFC. Any information a medical source is able to provide about the individual's impairment and functional capacities related to CFS will be helpful.

Third-party information

This includes evidence from medical sources that are not “acceptable medical sources” but who have provided services to the individual, and may be very useful in deciding the individual's credibility.

Information from persons other than the applicant and his or her treating sources may help to assess an individual's ability to function on a day-to-day basis, and to describe the individual's abilities over a period of time.

Such information may include:

  • Information from neighbors, friends, relatives, or clergy
  • Statements from such individuals as past employers, rehabilitation counselors, or school teachers about the individual's impairment and the effects of the impairment on functioning in the work place, rehabilitation facility, or educational institution
  • Statements from other practitioners with knowledge of the individual including nurse-practitioners, physicians' assistants, naturopaths, therapists, social workers, and chiropractors
  • Statements from other sources with knowledge of the individual's ability to function in daily activities

The decision-maker is supposed to carefully consider all of this information when making findings about the credibility of the individual's allegations regarding functional limitations.

How to present a strong case for disability due to Chronic Fatigue Syndrome

  • Be consistent in what you describe to your doctors and to Social Security about the severity of your symptoms and how they limit your activities.
  • Maintain a close relationship with your medical sources, clearly describing your symptoms, and making sure your doctor documents your complaints in the medical record.
  • See your doctor on a regular basis (at least 3 times a year) if possible.
  • Have your doctor, preferably a specialist like a neurologist, write a letter in support of your claim. In it, that doctor should describe your physical findings, any abnormal lab tests, and tell specifically how you are limited in your ability to normal daily activities and work. A good sentence your doctor should use is "My patient is unable to sustain an 8-hour work day, five days a week, due to the severely limiting fatigue (he or she) experiences from Chronic Fatigue Syndrome."
  • Keep a daily diary of your symptoms and activities, and use this diary to give information to Social Security about how you are limited by your symptoms.
  • Tell Social Security how long your symptoms last, what makes your symptoms worse; and what, if anything, improves your symptoms.
  • Tell if you are ever bedridden because of your symptoms and how long that lasts.
  • Don’t be so overly detailed in your descriptions that it appears you have “written a book.”
  • Tell if you are able to do some activities, but be sure to describe any resulting symptoms from doing those activities.
  • Don’t be embarrassed to mention any mental difficulties, such as depression or anxiety.
  • Most importantly, be persistent and appeal the decision if you are denied.

With perseverance, you will succeed. Good luck.

Posted on Thursday, November 3, 2005 at 11:08PM by Registered CommenterKeith Holden, MD | Comments8 Comments

PrintView Printer Friendly Version

EmailEmail Article to Friend

Reader Comments (8)

Thank you so much for this valuable information.

I may have to go on long term disability, but in my case my Epstein Barr titer was normal (although this was tested a couple of years ago) I do have a positive ANA titer (1:640) and a high CRP (11.3). In addition, my cortisol and DHEA levels are currently low. I have yet to be diagnosed other than "auto immune disease".

Any information I should know if I apply for Social Security?
December 2, 2005 | Unregistered CommenterSDD
Thanks for your comment. Make sure you are seen by a Rheumatologist (specializes in autoimmune diseases) who documents all of your physical and diagnostic findings, as well as your symptoms that impact your ability to function and work. If possible, have that specialist write a letter to Social Security in support of your claim, and in that letter he or she must emphasize how your disease impacts your ability to work on a sustained basis. It would also be helpful if this specialist classifes what type of autoimmune disease you have. Good luck.
December 8, 2005 | Registered CommenterKeith Holden, MD
Hi Dr. Holden,

Thank you for your response. I have an update for you. My diagnosis is "chronic immune dysfunction syndrome with fatigue". In addition, I also have hypothalamic pituitary adrenal dysfunction along with gonadotrophin dysfunction (ovarian failure). I also repeatedly fail the orthostatic instability standing tachycardia test.

My hormone levels are abnormally low, including my free cortisol. I had an MRI one year ago and the results were normal. Do you think Social Security would require me to get another MRI or do you think I have enough medical evidence at this point to get disability? I have health insurance now, but may lose it very soon. =(

Thanks.
January 23, 2006 | Unregistered CommenterSDD
By the limited information you have provided me, it sounds like Social Security may have enough information to make a decision in your case. Though, please note that the way adjudicators reason through decisions varies drastically from office to office. Be sure you have a recent physical exam from your treating physician in file when you apply, along with all recent blood work reflecting the hormone abnormalities you describe. The orthostatic testing should also be recently documented. By "recently," I mean no longer than 3-6 months from your application date. In addition, as described above, have your treating doctor write a letter that describes how your illness specifically prevents you from working on a sustained basis. Good luck.
January 24, 2006 | Registered CommenterKeith Holden, MD
This site is very good and easy to follow for someone who has cognitive problems that come with some disabling sonditions. I was most impressed with the advice about filling out the Function Report. In 1989 when I got my disability, I was sent something like this as part of an appeal. I have been advising people ever since about the need to demonstrate functional impairment as opposed to listing four MD's and a long narrative describing an illness... The Function report changes how one conceptualizes the whole process. THANKS!
March 4, 2007 | Unregistered Commenterpat fero
Thanks for your kind comments.
March 8, 2007 | Registered CommenterKeith Holden, MD
Thank you for being compassionate and including information on CFS on your website. CFS is a very real condition and I'm happy the CDC finally came out and publicly stated how disabling CFS can be. CFS affects your nervous, immune and endocrine system.

Unfortunately with all of my symptoms and conditions, SSI denied my appeal. I am getting long term disability through my employer's insurance company, but am concerned about the possibility of needing Medicare in the future, as my benefits through COBRA expires this year.

I think SSI needs an overhaul. I applied for benefits in late 2005.
March 27, 2007 | Unregistered CommenterSDD
Yes there is much we all need to continue to learn about this condition. My best wishes to you.
March 28, 2007 | Registered CommenterKeith Holden, MD

PostPost a New Comment

Enter your information below to add a new comment.
Author Email (optional):
Author URL (optional):
Post:
 
All HTML will be escaped. Hyperlinks will be created for URLs automatically.