Dr. Richard Podell - a clinical professor at New Jersey's Robert Wood Johnson Medical School - has served as an ME/CFS and FM disability medical expert witness on behalf of both insurance companies and patients, and lectures legal professionals on the process of disability litigation.
Without hard lab test data to measure how sick you are, you can still provide objective evidence of how it affects your life. Here, Dr. Podell outlines the issues you’re dealing with, and practical “tests” you can use to help prove CFS disability
People suffering from chronic fatigue syndrome (CFS) often struggle with their illness for years before finally deciding to apply for disability. I see this in patients from New Jersey and from many parts of the country. I have seen tears and frustration when an insurance company representative refuses to believe that they are as ill as they claim.
Take heart. You can improve your CFS disability claim. But to do this, first try to see yourself through the insurance examiner's eyes. Ask not how your CFS feels to you, but how your illness might look to someone else.
Expert Medical Witness Issue #1
An insurance company can't just assume that you're telling the truth only because you say so.
Long experience has taught insurance companies that at least a few persons claim to be sicker than they really are. So the disability company has an obligation to their shareholders to satisfy themselves that those who claim to be disabled actually are.
Medical Expert Witness Issue #2
Fatigue, by definition, is subjective. No one can tell for sure how you feel just by looking at you. This is different from many other kinds of illness where a main sign of illness is something you can see or touch.
For example, if you have a bad back you can witness trouble bending. If you knee hurts, you tend to limp. If your heart or lungs are bad your EKG or chest X-ray might show it.
But chronic fatigue syndrome disability is not the same. You may look fairly normal, even look well. It's much more how you feel, than how you appear. So, how can the insurance company decide whether you are telling the truth or not?
Expert Medical Witness Issue #3
With CFS, if you physically push through your limits you'll often have a flare up of symptoms. But the flare up might not occur immediately. It's very often delayed for several hours or into the next day.
This delayed flare-up pattern for CFS disability is profoundly different from the pattern we see for many other kinds of illness. Some insurance industry representatives - and indeed some physicians - seem not to have learned this most critical fact.
We can see this in the insurance industry's most commonly used “objective” tests - the FCE or Functional Capacity Evaluation
Typically, a health professional observes the claimant as they go through a series of exertions such as walking, crawling, bending, lifting, etc., over a few hours.
• That kind of test usually tells what you need to know when the main problem is muscle weakness or stiff joints. In these cases, symptoms flare-up quite quickly, while the observer is still present.
• But, for CFS, the FCE misses the key point. Often you get the flare-up after you've gone home, when there's no longer an observer around to see how you're suffering. In that case, except for your say-so, the delayed reaction that occurred is bound to be missed.
Expert Medical Expert Issue #4
On any one day, pushing beyond your physical limits might result in only a minor flare-up. But repeating this effort again for two days, or three - or, as in work, for five days in a row - that will usually cause a much more severe and longer lasting flare-up than would occur from one bad day alone.
FCE protocols typically test for just one day's extra effort, or sometimes for two. But in the real world, we work five days every week, for week after week and month after month. As now applied, the functional capacity test is not a valid measure of the ability of someone with CFS to sustain the effort needed to keep steadily at work.
Practical “Tests” You Can Use
To Help Prove CFS Disability
There are not yet commonly accepted “objective” lab tests to prove you have CFS, much less how severely ill you are. But there are ways to “objectively” prove how living with chronic fatigue syndrome has affected how you live.
Test #1: Consider maintaining an ongoing diary of how you feel and spend your time. Include descriptions of how modest tasks affect you, and how long it takes to recover when you overdo.
If you start your diary today, within a few months you'll have an “expert medical witness” record that can be taken seriously.
Test #2: Ask for a written statement from people who know how your illness affected how you live. This can include friends, clergy, employers, neighbors, even family. This is “objective” testimony, that definitely counts.
Test #3: Ask your physician to include details in his or her office notes that give specific examples of incidents in which your illness has affects your life style and activities. Your doctor's notes may be your most important medical expert witness.
Test #4: Be sure your physician documents all your main chronic fatigue syndrome related problems, not just that you “feel tired.” That minor activity makes you worse is very important, as is muscle pain, memory or concentration difficulties, joint aches, poor sleep and other common CFS complications. All these can affect your ability to work.
Note: many people with chronic fatigue syndrome disability also satisfy the diagnostic criteria for fibromyalgia. If you qualify for both diagnoses, it's often best to present them both. (See also Dr. Podell’s article on “Fibromyalgia Disability Application Issues: How to Be Your Own Expert Medical Witness”.)
Test #5: Consult at least one physician who you know has special expertise, with chronic fatigue syndrome. My patients from NJ, NY, PA and elsewhere make clear that, in recent years, many rheumatologists, physical medicine specialists, internists and family physicians have come to understand that CFS is a real, difficult and physical illness.
Check with your local CFS support groups for referral to a doctor who is both knowledgeable and sympathetic.
Test #6: You and your medical and legal advisors should have a serious discussion about whether or not you should accept an insurance company's invitation to do an FCE (functional capacity evaluation).
As currently performed the FCE too easily becomes a misleading, not valid measure of your ability to maintain function in the workplace. Also, if you are severely ill, the physical effort required to perform the FCE, might itself be enough to make you much worse.
Test #7: Consider a formal evaluation by a mental health professional - psychologist or a psychiatrist. Being chronically ill can easily lead to anxiety or depression. That's nothing to be ashamed of. If that's the case, you can almost always benefit from treatment. It won't cure your CFS, but reducing mental distress most likely helps healing.
From the disability perspective, you don't want to be told that your main problem is depression or anxiety, if that's not the case. Once an evaluation has been done, your psychologist or psychiatrist will be in a position to say that your physical illness is the main reason why you're not able to work.
Test #8: If memory and concentration difficulties are a major part of your disability claim, this can be demonstrated objectively by formal neuropsychological testing. The average psychologist or psychiatrist doesn't do this special testing.
Among those with neuropsychological testing skills, only a portion have experience and knowledge with the special problems of CFS. Be sure the neuropsychologist you choose has the experience you need, including service as an expert witness for cases like yours. [As a possible starting point in locating a neuropsychologist, check the membership directory of the American Academy of Clinical Neuropsychology, which includes some professionals in Canada as well as the US.]
* This article is reproduced with kind permission from the website of Richard Podell, MD (www.drpodell.org) © 2002 Podell and King Medical Practice. Dr. Podell is a clinical professor at New Jersey's Robert Wood Johnson Medical School. He has special interests in Chronic Fatigue Syndrome/Fibromyalgia, stress related disorders, and clinical nutrition. Dr. Podell has offices in Springfield and Somerset New Jersey. For more information please go to www.drpodell.org.
Note: This information has not been evaluated by the FDA. It is generic and is not intended to take the place of professional legal or medical advice, or to diagnose, treat, cure, or prevent any illness, condition or disease. It is very important that you make no change in your healthcare plan or regimen without researching and discussing it in collaboration with your professional healthcare team.