Disability and Chronic Fatigue Syndrome(ME/CFS) III: Documenting Your Limitations by Cort Johnson

Documenting Your Limitations

Most patients are able to verify that they have chronic fatigue syndrome. The really tricky part lies in proving that the limitations that this disease places on you make it impossible for you to work.

“Your case is won or lost based on the severity of your symptoms (limitations) and not on the CFS diagnosis. .. Winning a CFS disability case is now 10% documentation of the diagnosis and 90% documentation of impairments and limitations! Never lose sight of that crucial fact!" Scott Davis, Disability Lawyer
 Remember, no one is disabled simply because of (CFS)…it is the severity of your symptoms and limitations resulting from CFS that makes the difference between obtaining disability benefits or not.”    Scott Davis, Disability Lawyer
“If you remember nothing else about Social Security disability, remember that your capacity for performing work is the only thing that matters to a Social Security judge. In most cases, the judge’s decision really boils down to his/her decision about whether you could hold down a simple, sit-down type of job that requires no training; that allows you to sit, stand, and adjust your position; and that is not production oriented.”   Jonathan Ginsberg, Disability Lawyer

The aim now is to document the severity of your symptoms and how they keep you from working. In order to get disability your limitations – your fatigue, pain, post-exertional malaise, cognitive problems, orthostatic intolerance, chemical sensitivities, etc. need to be severe enough to prevent you from doing even light, sedentary part-time work.

Your Medical Record - The primary way the SSA judge determines how severe your limitations are is through your medical record and your disability evaluation. Documented impairments in chronic fatigue syndrome (ME/CFS) include such things as

  • increased fatigue when you exert yourself physically or mentally. Documenting this indicates that you simply don't have the resources to function on a regular and sustained basis
  • pain - reduces your ability to move or to concentrate. Then fibromyalgia and ME/CFS increased pain often results from increased activity; i.e. it prevents you from functioning on a regular and sustained basis.
  • difficulty concentrating, comprehending new information, and problems with memory or executive function - you don't have the mental capacity to function on a regular and sustained basis.
  • difficulty standing
Documenting Your Condition with Your Doctor. Your doctor’s documentation of your impairments will be the most critical part of your case. Take every opportunity, therefore, to make sure your doctor is aware of and documents how this disease effects you; communicate your financial/work problems, your ability to care for your children, the tasks you can and cannot do, how much activity you can handle, etc.
"My advice to anyone with any chronic illness is when you visit your doctor, tell him all about your problems…when he asks how you are NEVER SAY OKAY! Always tell them about your other problems…no money, no husband, nowhere to go, ….no insurance. My pills are funning about. And I can’t work right now” Shari, an ME/CFS patient.
Because your goal is to develop a consistent record of your impairment over time every time you see your physician you should be specific about how chronic fatigue syndrome (ME/CFS) impairs you. It’s important that you consistently report your symptoms and that your symptoms are consistent over time.

Hot Tip: See your doctor regularly - at least three times a year - even if he/she is not effectively treating you.. Large gaps between doctor's visits give the Social Security administration in opening to suggest that your condition is not severe.

Hot Tip:  Document Your Unique Symptoms – Disability judges a hear a lot about ‘pain and fatigue’ in the courtroom . But they don’t often hear the specific kinds of symptoms that are common to ME/CFS. Scott Ginsburg argues that symptoms such as dizziness, inability to stand, digestive problems, slurred speech, cognitive problems, inability to sleep, etc. are far more likely to impress to a judge than stating one is fatigued. Therefore document your specific symptoms.

Dr. Katrina Berne, a clinical psychologist and author and person with ME/CFS developed a comprehensive symptom checklist she advises her patients to complete and take to their doctors. This checklist should be updated every few months. The doctor will keep this in her/his records and it will be forwarded to the SSA.

Dig Deeper! Dr. Katrina Berne's Chronic Fatigue Syndrome Symptom List

The following should be noted in the Doctor's medical records:

  • Symptoms – focusing on the severity, frequency and duration of your major symptoms.
  • Date and type of onset of ME/CFS
  • Medical records
  • Rigorous Treatment notes – Ken Casanova reports that the treatment notes are critical; they should be as rigorous as possible; thus instead of a doctor reporting that the patient is ‘somewhat improved’ she/he should report the effect of the treatment on each of the patients major symptoms; i.e. fatigue is improved – patient can do 1 hour of work a day versus 30 minutes at the last visit.
  • The doctor should refrain from such general statements as ‘the patient is somewhat improved’. At every visit the doctor should note the severity of the symptoms the patient is experiencing.

The Evaluation Letter  Besides your medical records, your doctor's notes, etc. you need to have one of your doctor's to provide an overall evaluation of your condition. The evaluation letter is a critical part of your disability package. It should focus on how the fatigue, pain or disorientation or other symptoms you experience after engaging in work limits your ability to work on a regular basis. One reason to find a doctor experienced in disability issues to find one who can write a good, tightly constructed evaluation letter. According to Social Security guidelines, all things considered, the judge must give special consideration to your primary doctor's evaluation of your condition.

The evaluation letter should include a time component that notes how your limitations have progressed over time. It should include specific examples of the limitations imposed by this disease (e.g. limited ability to perform household chores, limited ability to take care of the kids, , etc.) and what happens when you exceed  those limitations. For instance the letter could describe what affects a certain amount of walking have on your pain and fatigue. The letter should then translate those effects into your ability to perform light, sedentary work.

In general the SSA wants to know how your disability effects your ability to do such simple things as:
  • Carry out your daily activities
  • Stand, sit or walk for long periods
  • Lift weights
  • Carry out instructions
  • Your ability to tolerate the stress of a work environment

Remember if the Social Security Administration believes you can engage in even 'light, sedentary' work it can deny your claim for disability

Dig Deeper – Read Appendix II: “Helping Your Doctor Prepare His Medical Report” in the Mass. Manual For Disability in CFS and provide it to your doctor. This memo, which was prepared by a lawyer, describes the documentary evidence doctors need to provide for your case to be successful. Included are sample letters your doctor can use as templates.

*Hot Tip - ME/CFS attorney Scott Davis suggests that you ask for your medical records every few visits to check if your symptoms/activity limitations are being recorded.

Hot Tip - Get a copy of the your doctor’s evaluation letter for your records. Review it to determine ways it can be strengthened if necessary.
Specialists: You can bolster your chance by getting a second (or third) letter from a specialist such as a neuropsychologist or neurologist that documents cognitive or other dysfunctions and how they prevent you from being employed

Documenting Your Inability To Engage In Sustained Activity: Laboratory Tests

The Steven’s Protocol - The U.S. government believes that given their fatigued nature CFS patients should be unable to pass an aerobic stress test. Unfortunately many CFS patients are able to pass them. In her presentation at the 2007 IACFS conference in Florida, Dr. Ciccolella reported of oneME/ CFS patient who had four physicians testify as to his/her disability but whose request for disability was nevertheless denied because he/she had passed a aerobic stress test. (This finding was overturned at the appellate level).

The Steven’s Protocol is a protocol designed by Staci Stevens, an exercise physiologist with ME/CFS at the Pacific Fatigue Lab at the University of the Pacific in Stockton, California that may become a game changer for many ME/CFS patients with regards to disability. The protocol, which is designed to document metabolic abnormalities in this disease, involves measuring various physiological parameters during two exercise tests done over two consecutive days.

According to results released at the IACFS/ME conference in Reno in 2009 from 40 to 70% of ME/CFS patients display a unique metabolic signature which prevents them from being able to engage in sustained activity.

The protocol, which involves metabolic and autonomic nervous system testing, a complete evaluation and a treatment plan, costs $2000. It is possible, however, to get the aerobic tests done at some hospitals or clinics for substantially less.

Dig deeper! Cracking the Foundations! The Pacific Fatigue Lab and ME/CFS.

Neuropsychological Testing – Neuropsychological testing to identify cognitive problems often forms the foundation of an ME/CFS’s patients disability application. There are several reasons for this. Finding cognitive impairments ‘relaxes’ the SSA’s tendency to determine you are capable of light sedentary work (if you can't think well enough to work then the SSA doesn't worry so much about your activity levels. Neuropsychological tests can also help to block an effort by the SSA to identify your primary disability as psychological. For these reasons they often form an invaluable part of a chronic fatigue syndrome patients evaluation.

Most neuropsychologists are not, however, familiar with the specific cognitive abnormalities found in ME/CFS. Since many cognitive testing batteries will not find significant abnormalities in ME/CFS instead of aiding your case utilizing the wrong neuropsychologist can torpedo it.  (Sheila Bastien and Taras Ornischencko are two experienced ME/CFS neuropsychologists. Please -mail me if you know of other ME/CFS knowledgeable neuropsychologists - phoenixcfs@gmail.com )

It’s necessary to establish that these impairments prevent even sedentary and light activities on a regular, predictable or sustained basis. Lastly, the provider must generally predict, based on experience and the patient’s response to therapy, how long he/she believes your impairments (ie your illness) will last.

Documenting Your Inability To Engage In Sustained Activity: Other Means

No Money? Laboratory tests can take you a long way on your quest for disability but what if you don’t have a sheaf of positive laboratory tests to throw at the SSA? You can still win but what you need to do is document, document, document your impairments.

Keep a Diary – A well kept diary that includes your symptoms, your ability to function, your general health and attempts to get well can be invaluable in impressing on a Social Security judge the validity of your case. Be sure to note what makes your symptoms worse, how long they last, and what if anything will help to improve them. If you become bedridden be sure to point that out. If you have trouble walking or standing note that. It’s important to note the limitations these symptoms cause you. Don't be overly detailed, though - don't write a book - as book length explications may cause the SSA to doubt whether you’re actually disabled. Dr. Holden suggests that it's okay to mention feelings of anxiety or depression arising from your struggles with this illness.

Letters - Letters describing your inability to work from a licensed professional such as a physical therapist, educators, family members, friends, and, in particular, your supervisor at work and co-workers that specifically document how your health has declined are very helpful.
Documenting Other Diagnoses: If you have other medical problems then having your doctor document them will only help your case. .