If you suffer such severe chronic fatigue syndrome symptoms which have lasted or can be expected to prevent you from working for at least 12 months, you should consider applying for disability benefits with the Social Security Administration.

        The Social Security disability program (SSDI) is paid out of the Social Security Trust funds from FICA taxes from income you, your deceased spouse, or in some cases, a deceased parent or deceased grandparent has paid over his or her work life. The wage earner accumulates quarterly credits based on wages or salary. The claimant (the person applying for benefits) must have a certain number of credits to qualify for Social Security disability benefits depending on his/her age.

        Generally, a wage earner over the age of 31 must have earned 20 credits in the ten years prior to the date of disability to qualify for Social Security disability benefits. The credits for individuals below age 30 are less. To determine whether you have enough credits to qualify for Social Security Disability, call 1-800-772-1213 or the SSA website: and request a PEBES (Personal Earnings Benefits Estimate Statement) which will list your earnings and credits for your entire work history. You have the right to challenge (with acceptable proof such as tax records) any inaccuracies you find.

        If you do not have enough credits to apply for Social Security disability benefits, you might qualify for Supplemental Security Income benefits. Unlike SSDI, SSI is a welfare entitlement paid from general Treasury funds. Therefore, you will have to disclose all assets and income to SSA to permit a determination whether you qualify for the non-medical part of the program. Basically, you must establish indigency to qualify.

        The medical requirements for SSI and SSDI are the same. Under certain circumstances, you can qualify for both programs. (For example, where there is no other income, your assets are virtually exhausted, etc.). Once again, you must either go to the local Social Security District Office or contact them at the 800 number to set up a phone interview to determine your eligibility for SSI benefits. Most local Legal Aid or Legal Services offices assist claimants where the case is exclusively SSI. Contact your local Bar Association or telephone directory for the name of the free legal services office nearest you.

        If you are too ill to go to the Social Security District Office call 1-800-772-1213 and request a phone interview which is usually made within a couple of weeks of contact.

        Upon filing the application, Social Security begins its review of the case. AU cases are examined by the Social Security Administration under a five step sequential evaluation process which is addressed below in the context of a CFS case. And all cases go through administrative appeals with SSA before your right to have the case reviewed by a federal judge, (other than an ALJ), arises.

        While Social Security is a federal agency, it hires the State office of Disability Determinations in each state to medically assess the case. Therefore, after your application is filed, the local Social Security District Office (DO) sends the information to the State Office of Disability Determinations (DDS) which is presumed to have more knowledge of competent local doctors, and other community medical information than the federal government. The state agency will also mail you forms to complete, and frequently send you for medical exams to physicians called consultative examiners, who are paid by DDS to medically evaluate you to determine the extent of your illness and functional limitations. Other physicians, called medical consultants, will review the reports of your physicians and those of the consultative examiners and make a determination whether you are qualified for benefits under the Social Security regulations. No matter the decision, the state agency then returns the file to the SS district office to notify you of the decision. If the decision is unfavorable to you, you have 60 days to appeal. You should send all appeal letters to the DO certified mail, return receipt requested to prove it was sent AND received.

        The next step is known as reconsideration. Essentially, everything that occurred at the initial stage occurs again. If a denial results, you have 60 days to appeal the decision to an Administrative Law Judge. Again, the appeal should be in writing and mailed to the District Office via certified mail, return receipt requested.

        At the hearing stage, it is wise to retain an attorney experienced in social security disability matters. Attorney fees in SSA cases is governed by federal regulations. To locate an attorney in your state, you may contact the National Organization of Social Security Claimant's Representatives which has members throughout the United States with experience in representing Social Security claimants. NOSSCR's number is (800) 431-2804. If you call, obtain the name of more than one attorney in the area, and do not hesitate to ask the number of CFS cases they have done. I am always willing to provide guidance to experienced social security attorneys with little or no experience in CFS cases. In fact, I have taught attorneys at national seminars how to try SS CFS cases. So, please do not hesitate to have them call me.

        Social Security has a few obligations in dealing with attorney fees. First, if the attorney is successful in obtaining a favorable decision, has complied with the requirements of the fee agreement regulations, and has had the claimant sign the agreement and submit it BEFORE SSA renders a favorable decision, the agreement is generally approved, and ultimately payment is made by the SSA Payment Center directly to the attorney (Because 25% of retroactive benefits are ,withheld in such cases). Generally, the fee agreement provides for payment of 25% of retroactive benefits, or $4,000.00 whichever is less. However, in certain instances, where additional appeal work, etc., has been done, the attorney can make application for a larger fee. That must be specifically set forth in the fee agreement to be enforceable, however.

        There are also times when SSA mistakenly sends the claimant the attorney fee with the retroactive benefit check, and then the responsibility is on the claimant to pay the attorney directly.

        An attorney may also opt to file a fee petition. If he/she does so, all hours worked on the case, along with all the expenses incurred must be set forth on the petition which must be approved by SSA AFTER a favorable decision has been reached. Again, the 25% withheld by SSA will go toward payment of the attorney fee by the Payment Center, and any balance remaining is paid to the claimant. Remember, SSA also withholds the first full five months of benefits and neither the attorney nor the claimant receives any part of that amount.

        Reputable attorneys have retainer agreements that comply with federal law. No fees may be charged and collected outside those laws. Violation of the fee provisions is a serious, potentially criminal matter for attorneys. A recent change in the law requires reduction of the attorney fee by 6.3% to cover the bureaucratic costs associated with withholding fees. An attorney may not request payment of that amount from you.

        If reconsideration is denied, as was noted, you must request a hearing before an Administrative Law Judge. The claimant has the right to review, and to copy the Exhibit file which contains the evidence the Administrative Law Judge will consider in deciding the fate of the claim. The claimant has the right to submit evidence, produce witnesses, and cross examine witnesses such as medical advisors and vocational experts who the ALJ may have requested attend the hearing to give him/her guidance about certain evidence in the case. If the ALJ orders a medical advisor or a vocational expert on the Social Security approved vendor list, SSA pays for that person to attend the hearing and give testimony. If the case is not successful at the hearing level, you have 60 days to appeal the denial to the last Social Security administrative appellate court: the Appeals Council in Arlington, Virginia.

        If the Appeals Council denies the case, you can appeal the matter to federal district court and through the federal court appeals system ending with the United States Supreme Court.

        As stated in the opening paragraphs, your application must be examined as part of a five- step process known as sequential evaluation. In quick order the questions at each step are:

        Step 1) Are you engaging in substantial gainful activity (SGA)? If so the claim is denied. SGA is not simply work. It is any activity INTENDED for pay or profit in which you earn more than $700.00 per month. Earnings of less than $500.00 a month are presumed not to be SGA. However, remember these are presumptions and both can be overcome with evidence. If you are found not to be engaged in SGA, go to Step 2.

        Step 2) Do you suffer from a medically determinable severe impairment? Severe in this context means does your medically documented (i.e. signs, symptoms and laboratory findings) illness prevent you from doing many basic work related activities such as sitting, standing, walking, lifting, pushing, pulling, bending, reaching, concentrating, etc. This step was frequently, and improperly, used for many years by many Administrative Law Judges throughout the country to deny CFS cases. They argued that because there was no diagnostic test to confirm the existence of CFS, the claim could not be supported even at this early step. That interpretation caused an enormous controversy within the Social Security Administration. Fortunately for many CFS sufferers, the end result was the creation of Social Security Ruling 99-2p. 99-2p is a policy interpretation ruling which provides instructions to SS adjudicators on how to properly evaluate CFS cases in SSDI and SSI cases.

        In the context of a CFS case, to establish a medically determinable impairment, SS accepts as medical signs one or more of the following, if clinically documented over a period of at least six consecutive months: palpably swollen or tender lymph nodes on physical exam- nonexudative pharyngitis; persistent reproducible muscle tenderness on repeated exams including the presence of positive tender points (even if the number of tender points is less than that needed to establish fibromyalgia as set forth by the American College of Rheumatology)- and any other medical signs that are consistent with medically accepted clinical practice and are consistent with the other evidence in the case record.

        In recognition of the fact that no specific lab finding is widely accepted as being definitive of CFS, SSA accepts the following lab findings to satisfy Step 2: an elevated antibody titer to Epstein-Barr virus (EBV) capsid antigen equal to or greater than 1: 5120, or early antigen equal to or greater than 1: 640; (These titers are exceptionally high, and from what I gather from physicians, not seen frequently in practice); An abnormal magnetic resonance imaging (MRI brain scan; neuromediated hypotension as shown by the tilt table testing or another clinically accepted form of testing; or any other lab -finding consistent with medically accepted clinical practice and consistent with other evidence in the case record. (E.g. abnormal sleep study, abnormal exercise testing).

        SSA also accepts mental findings to establish the medical determinable CFS case. Those findings will generally support complaints with cognition, memory, information processing visual spatial difficulties, word finding, comprehension, concentration, speech difficulties, calculation and other symptoms consistent with neurocognitive impairment. Support for additional complaints such as secondary anxiety and depression are also permitted. Any mental status or psychological testing which supports the complaints, will satisfy Step 2 as well.

        The intensity and persistence of all symptoms must be reviewed to ascertain whether they are severe in that they prevent the claimant from engaging in basic work related activities such as sitting, standing, walking, climbing stairs, bending, reaching, pushing, pulling, concentrating, remembering etc. If Step 2 is satisfied, then we proceed to Step 3.

        Step 3) Do you have an illness that meets or equals a listed impairment? SSA actually lists 14 different body systems in the Listings of Impairments. If your illness meets or equals in severity the requirements for one listed you win at Step 3, with no need to proceed to the final two steps. There is -no listing for chronic fatigue syndrome, so unless SSA finds it to be as severe as an impairment that is listed, Step 3 cannot be used in CFS cases. (in one of my cases, the ALJ found the claimant's CFS was as medically severe as the Multiple Sclerosis listing at 11.09 because the claimant's complaints, symptoms, limitations, and even some of her lab findings were as significant as those listed for MS). However, if you cannot establish disability at Step 3, you continue to Step 4.

        Step 4) The question asked is, Can you perform the work you performed for 15 years prior to becoming totally disabled? You must identify all the duties of all the jobs you had for 15 years prior to the onset of disability so the adjudicator can determine whether you can perform any of those jobs taking into account the restrictions and limitations of your illness. To support the claim, one should always list in detail all the illness related limitations which would make performing your past work impossible.

        It is important to note that in CFS cases, the level of function often varies from day to day, resulting in 'good" days and "bad" days. Unfortunately, CFS patients frequently define "good" differently from the general population. On a 'good" day a CFS victim may be able to perform basic hygiene requirements and do one or two chores. That must be explained to SSA so the adjudicator is not under a misconception about the level of function. I often recommend client keep a diary to establish the level of function. On days where cognitive problems are severe, the log should specifically state that journal entries could not be made that day. This must be done to accurately record function levels and to preclude the adjudicator from forming the common and wrong conclusion that because the CFS patient can sometimes make clear, cogent, and often lengthy statements in letters and on forms about their illness that their normal level of function is always that good. So many individuals who are misinformed about CFS find it difficult to believe severe fatigue and cognition disturbance complaints when they read well written and often lengthy statements from the claimant. The claimant's diary should demonstrate the actual ebb and flow of symptoms, restrictions and limitation of physical and mental function if honestly recorded. Therefore, the reviewer will not simply see the notations which are lengthy and clear, but also the "brain fogged" days where no entry or confusing statements are recorded. If the claimant is found to be incapable of performing his/her past work, then proceed to the final step.

        Step 5) If the claimant has gotten this far, the burden shifts to Social Security to show that there are jobs in the national economy that the claimant can perform in light of his/her age, education, work experience and considering the limitations caused by CFS. Like at Step 2, this step analyzes how the individual's symptoms affect functional capacities, in light of the claimant's age, education, and work experience. In many cases, CFS claimants are younger individuals who will not be found disabled if they are capable of performing sedentary work. Therefore, to find a claimant disabled, the adjudicator must find that the claimant is incapable of performing most sedentary work. In the CFS case, medically supported nonexertional (non strength demands) factors such as pain, fatigue and cognition problems can often support such a finding.

        Therefore, it is essential to seek treatment with a physician who is well versed in CFS and understands the testing which must be done to properly diagnose it, and to attempt to treat the symptoms and to support the above criteria in the SS disability context.


        In addition to disability benefits which may be obtained through the Social Security Administration as was outlined above, certain individuals may be entitled to disability benefits by virtue of their employment or because of an insurance policy they purchased on their own.

        Employer based disability insurance policies are controlled by a federal law, the Employee Retirement Income Security Act of 1974 known commonly as ERISA. In general, ERISA protects participants in the Disability Plan (some protections only pertain to Plans which have 100 or more participants) and violations of those protections can sometimes result in penalties 'against Plan fiduciaries and others charged with making decisions about payment of benefits. For example, a person filing for ERISA based disability insurance benefits is entitled to review all Plan documents, and other items such as the claim file. The claimant may be asked to pay copying costs, or review the Plan at the fiduciary's site, but the failure to respond to the request can result in a penalty of $110.00 per day for every day after 30 days that the Plan was not available for review.

        As it presently stands, there are no rights to a jury trial in ERISA disability cases, and the legal standard of proof for the employee is often quite difficult. In many cases, the federal court that reviews the administrative decision of the insurance company is merely concerned with whether the decision to deny the claim was arbitrary and capricious. More often than not, that means was there ANY basis for the insurance company to reject the case. If so, the decision Will not be found to be arbitrary and capricious. Therefore, many insurance companies send the claimant for an independent medical exam (EVE) (paid for by the insurance company) and if the RAE physician states that the claimant does not have a medical basis for disability under the policy, the claim- denial may indeed be upheld by a reviewing federal court. That is because most courts are merely reviewing the decision of the 'insurance company, not looking at the case fresh.

        Therefore, to demonstrate the strength of the claim, enormous medical support from CFS physicians familiar with the illness must be supplied to the long-term disability insurance company during the administrative review or the federal reviewing court will not consider it. I also encourage my clients to have a trusted family member or friend accompany them to the IME equipped with a videotape recorder and to request that the exam be recorded. If the physician is unwilling to do so, then I have a letter prepared in advance indicating that the claimant sought to have the exam recorded, but was refused by the doctor and have the doctor sign it.

        In various parts of the country, some federal courts are allowing employees to factually demonstrate that the unfavorable decision on the part of the insurance company, and/or the employer (whoever is identified as a fiduciary under the Plan) may have been the result of an unallowable conflict of interest. Therefore, decisions unfavorable to the employee in ERISA cases, which have traditionally been almost insurmountable, are now given a bit more leeway to prove a bad motive on the part of the fiduciary in denying the claim. Examples of facts to support a finding of conflict of interest could include, in some federal courts, an insurance company who is the sole fiduciary who is paying the claim purely out of the insurance company reserves, and who has ignored considerable evidence or facts in administratively denying the claim. Another example of conflict in some federal courts might be where the employer is the fiduciary charged with deciding whether disability benefits should be paid, while simultaneously being sued by the same employee for discrimination of some kind, such as disability which is medically well supported.

        In most states, individuals who purchase disability insurance coverage, can not only request a jury trial, but they can also, unlike ERISA, with adequate factual proofs, allege bad faith damages with respect to actions on the part of the insurance company in denying the claim. The legal standard of proof is also much less onerous for the disabled individual who purchases their own coverage.

        It is also crucial to note that many individuals who file claims for disability benefits, whether through the employer or from policies purchased privately, are routinely the subject of surveillance on the part of the insurance companies. Insurance company representatives publicly boast of schemes to "catch" disability applicants doing activities they claim they cannot do on forms, in interviews or in correspondence etc. Many lawyers for insurance companies prevent the employee and/or their attorney from viewing surveillance tapes until after the deposition of the employee. Many courts allow them to do so. This is again purportedly done to "catch" the disabled claimants in conflicts between the limitations and restrictions to which they testify and those recorded on videotape. These same attorneys often publicly ridicule the notion of "good days" and "bad days" arguing instead that the activity recorded on the surveillance tape speaks for itself, even though it may not record a claimant's activities for an extended duration.

        Therefore, it is crucial that the claimant complete forms in a thorough and honest manner. If the forms only provide sedentary as the lowest work classification, and the claimant most days cannot perform sedentary work, that should be handwritten on the form. If the claimant has good days and bad days, that should also be noted with an explanation of the types of things that can be done on a good day, and the uncertainty of the number of good days that will occur in a given week and the extent of limitation on a given day. Honesty is crucial. And that also means not EXAGGERATING abilities out of few that the limitations will not be believed if true. Frequently, insurance companies have access, by virtue of releases signed by claimants, to the Social Security Administration file. So, consistency is important in answering ALL forms and questions.

        In many jurisdictions egregious actions on the part of the insurance company or the private investigator vendors hired by them might include actions such as trespassing on private

property to obtain photos of the claimant through a window, illegally tapping a phone or residence etc. which could give rise to an invasion of privacy action. Therefore, ask friends and family to keep an eye out for any strangers who might be engaging in such conduct, and inform your attorney immediately.

        These issues are also raised as a reminder of the importance of receiving treatment from a CFS physician. A doctor who keeps well informed about CFS research, treatments and diagnostic techniques pertinent to the illness cannot merely help to deal with the often debilitating symptoms, he/she can also assist in supporting the claim for benefits which are often necessary for the individual's survival.

        At a recent disability law conference, the medical director for a large insurance company stated before a national audience of lawyers, doctors and insurance company officials that the existence of conditions such as CFS were based on "junk science" among many other disparaging remarks. A CFS physician, with sterling credentials and knowledge of the illness can dispel the taint of such ill informed remarks and provide crucial assistance in supporting a claim for benefits.

        Finally, it is also important to read the language of the policy carefully. The summary of the ERISA Plan or the summary of the insurance policy included in the Employer Benefit Handbook is not necessarily accurate. Where there is a conflict between the summaries and the actual policies or plans, many courts have found that the actual documents control. Read the terms carefully to ascertain whether there are exclusions or limitations for mental illness. If an insurance company wants to save money, they may construe the CFS complaints as depression, and limit the payment of benefits, if at all, to two years.

        Many long-term disability policies also provide for payment of benefits if the person cannot perform the material and substantial duties of his/her own occupation, thereby permitting the insured to perform some other type of work. In my experience, insurance companies use performance of other work as evidence that the person is not at 0 disabled, so work efforts should be attempted only when functional abilities are consistently strong.

        Some disability policies provide "own occupation" coverage for a couple of years, then require proof that the person is totally disabled thereafter. Disabled individuals often believe that a social security disability award therefore ensures success on the long-term disability claim. Unfortunately, however, many courts have held that because the standards are different, a favorable social security ruling will not require a finding of disability under the disability insurance policy.

        In summary, it is always best to proceed through the maze of disability with the assistance of those well versed in the illness and the practices of the other side. Medical documentation, and candid recitations of extents of limitations are crucial in filing for all disability benefits.

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