Studies suggest that employment rates of people with chronic fatigue syndrome (ME/CFS) are low; 15% are believed to work full-time and less than 50% work at least part-time. From one-third to one-half of CFS patients in the U.S. may at some point become unemployed and many of them will depend on the U.S. government’s safety net to help make ends meet.
The U.S. government runs two disability programs, Social Security Disability Income (SSDI) and Social Security Income (SSI). SSDI is an insurance program for workers that almost all employees in the U.S. pay into*. In order to qualify for the program you must have worked for five of the last 10 years. The extent of the benefits you receive from the program depends on how much you’ve put into it. SSI is an insurance program for impoverished people who were unable to meet the criteria for SSDI or for disabled children.
The ME/CFS Disability Pages on Phoenix Rising
Disability has its costs; besides having an income that’s usually far lower than what the patient is used disability can also lead to social isolation as well. For patients no longer able to withstand the rigors of work, however, disability can provide a financial lifeline and a chance to recover at least some of their health.
Because these programs require that applicants document their inability to work chronic fatigue syndrome (ME/CFS) patients must gather extensive evidence regarding their limitations. Assisting patients in documenting that is what these pages are all about.
Helpful Hints Regarding Disability
The disability process is time consuming and often lasts well over a year.
Early in the Process Expect the Worst
Expect your disability claim to be denied at least twice. Ken Casanova, the author of the Mass. CFIDS Association’s guide to disability in CFS guide states that ‘very often people are rejected at the initial application stage and at the reconsideration stage without a complete and fair review of their cases”. This is not unique to chronic fatigue syndrome; many people with other diseases are rejected early in the process. Expecting ‘fairness’ early on is unreasonable. It is during the third and last stage of the disability process at the administrative review before a judge that most chronic fatigue syndrome (ME/CFS) patients win their cases.
Maintain An Ongoing Relationship With a Physician
Since the SSA wants evidence of a chronic disease it is important that you see your doctor regularly. Lapses in your medical record will cause the SSA to question the seriousness of your illness.
Keep Your Doctor’s Records
Physicians are required to give you copies of your medical record if you ask. Keep a copy of your records that you can provide to the SSA when they ask. Many patients see multiple doctors over time and getting records from each of them can be problematic.
When one patient’s doctor received a heart transplant as the patient was preparing for a judicial review of his case the doctor’s office stopped communicating with the patient and the Social Security Administration. The patient subsequently learned that the doctor had never done the disability evaluation or provided the SSA with the patient’s medical records. Efforts by the SSA to get the patient’s medical records were returned ‘Clinic closed”. Not long afterwords the doctor re-opened his clinic but the patient lost his case.
Find a Doctor Knowledgeable in Chronic Fatigue Syndrome (ME/CFS) and (hopefully) Social Security Disability
Use local resources, a support organization, or the CFIDS Association of America to direct you to a knowledgeable physician who can accurately document your condition.
Tell your doctor you’re seeing that you’re planning to apply for disability and will need his/her evaluation and are willing to pay for it. (Once you are embarking on a disability the kinds of notes your doctor takes will probably change (become more detailed). Some doctors are unfamiliar with the disability process or simply don’t wish to take the extra time to prepare an evaluation may be hesitant about providing this service.
If your doctor appears to be uncomfortable with producing a disability evaluation then look elsewhere. A less than sympathetic or an ignorant physician can torpedo your case by either intentionally or accidentally phrasing his evaluation in ways that leave the seriousness of your case open to interpretation.
If Necessary Educate Your Physician About Documenting Your Case
If your physician is not experienced in producing disability evaluations but is willing to take this on educate him/her about how to produce the most effective evaluation. These pages provide you with resources you can use to help your doctor prepare an effective disability evaluation.
The best physician evaluations explicitly state the cause and degree of your disability. Poor physician evaluations, on the other hand, characterize your condition in nebulous terms which insurance company lawyers or government reviewers can twist to their own advantage.
Fill Out the Social Security Forms Correctly
Fill out your forms in ways that can improve your chance of success. Check out attorney Scott Davis’s Five Tips for filling out the Social Security forms for chronic fatigue syndrome (ME/CFS) patients.
Find a Disability Lawyer
The vast majority of patients receive their disability only on the third (and last) review of their case – before a judge. After you have been rejected twice you should strongly consider hiring a disability lawyer or legal representative to present your case. Most disability lawyers work on a contingency basis; they are not paid unless they win, and then their fees are restricted to 25% of the award up to a limit of $4,000. Some lawyers will guide you through the entire process.
Finding a lawyer knowledgeable in chronic fatigue syndrome/fibromyalgia can be extremely helpful. Your lawyer’s job is to skillfully translate evidence from your doctor, co-workers, family, etc. into a package that convinces a disability judge that you are unable to work even a simple, sit down, unskilled job.
Check out how one lawyer successfully argued two cases
- I represented a Fibromyalgia client before a Judge who called a psychiatrist as an expert witness. The Judge granted benefits on the ground that my client’s “fibro fog” was equivalent to a chronic state of anxiety – a psychiatric condition.
- Two weeks later, I tried a different Fibromyalgia case before another Judge in the same hearing office. This Judge awarded benefits (correctly in my opinion) on the basis of a combined impairment – recognizing the combined effect of Fibromyalgia’s impact on my client’s physical and mental condition.
Patients With Part-time or Intermittent Work Records Beware
If you’re employed you’re entered into the Social Security Disability insurance system*. Full time workers typically have five years after they’ve stopped working to prove to the government that they’re disabled but if you’re working part time or your work record has gaps in it then you may have far less time. (This is one reason it’s important to see a physician regularly to build up a strong case while you’re still working – you may not have the time to build a case later.) If you’re not working regularly then check with the SSA to see how much time you have to prove your case.
One CFS patient underwent extensive tests to verify his disability a year after he stopped working only to find his ‘coverage’ ended six months earlier because of his intermittent work record. Despite having documented impairments he was denied disability on grounds of inadequate documentation.
*If you’re a student working for a University you may not be paying Social Security taxes and therefore will not be eligible for Social Security disability. Check your pay stubs to see if Social Security taxes are being removed. If they’re not then you’re not covered under Social Security disability system. Ask your employer to start taking Social Security them out of your paycheck.
Prepare Now Even If You’re Working
People with chronic fatigue syndrome (ME/CFS) who are currently working should create a medical record that will support a disability claim later if one is needed. Among other things they should consider using the health insurance they have available now to get the type of tests done that will support a disability claim. Note that many of the tests doctors give chronic fatigue syndrome (ME/CFS) patients do not help the patient build a strong case for disability. (See below).
Get the Massachusetts CFIDS Associations Guide to Disability
This guide, which is available for free, is by far the most complete guide to disability issues for ME/CFS patients on the net.
Read Scott Davis’s Papers on Chronic Fatigue Syndrome Disability
Scott Davis is an attorney who specializes in ME/CFS disability. His articles provide valuable tips on how to prepare your case.
- Five Crucial Steps to Winning your Chronic Fatigue Syndrome (CFS) Disability Case (1999)
- 15 Mistakes You Can Not Afford to Make! (2000)
- Winning Your Disability Case with the Help of Co-Workers, Family Members and Friends [Affadavits are Important] (2001)
- Completing Disability Forms: Five Critical Tips to Keep in Mind for Chronic Fatigue Syndrome and Fibromyalgia Patients (2002)
- Your Social Security Case Do You Need an Attorney to Win? (2002)