Rainbow at shoreline

The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Attorney Fee Agreements for Disability Claims: What is a Fair and Legal Agreement?

by Ken Casanova

The following article will provide some answers to basic questions for Massachusetts attorney fee agreements; similar rules and laws may or may not govern fee agreements in other states.

Individuals with disabilities must often seek the assistance of an attorney either to obtain or keep disability benefits to which they are entitled. A fee agreement is a contract between the individual and the attorney in which the attorney sets the fee and other charges for his or her services.

Sometimes, a client will question whether the total amount of money an attorney is asking for is fair or unfair. How can an individual determine if the fee or other charges are reasonable, proper, and legal given the particulars of his or her case?

In some rare instances the client knows that the fee the attorney is asking for is clearly excessive and unfair, sometimes even outrageous. Yet the client may feel desperate: the disability insurance company is wrongly trying to deny or terminate his or her rightful disability benefits, and a knowledgeable lawyer is promising to help obtain or maintain the benefits.

However, the attorney is asking for more money than would, by any stretch of the imagination, be fair for the amount of work that would be done by the attorney. Often finding a disability lawyer is difficult, the client doesn't know where else to turn, and there may be tremendous pressure to make a decision quickly.

So the disabled person can be in a terrible conflict: sign an agreement against his or her better judgment, or perhaps go without help and lose the disability benefits. What should the person do? If he or she has already signed an unfair or excessive agreement, what can be done to terminate the agreement?

The three types of fees

An attorney is entitled to a fee for the legal services he or she provides. The attorney may also be entitled to charge for certain other legal costs. The fee is generally charged in one of three ways:

  1. a flat fee of a fixed amount
  2. a fee charged at an hourly rate
  3. a contingent fee

A flat fee would cover the entire fee for the attorney's work.

A contingency fee, by contrast, is normally a fixed percentage of the total award of monies, if and only if an award is obtained. The lawyer cannot charge a fee if he fails to obtain monies for the client. The attorney is taking a risk, and therefore may claim a larger sum than he or she might normally obtain at an hourly rate. The contingent fee is designed to allow people to obtain legal services they might never be able to afford should they lose the case.

Sometimes, a lawyer may fairly charge, if agreed to with the full knowledge of the client, a fee using more than one of these methods: for example, a contingent fee with the addition of a limited flat fee or hourly charge should the case be lost. Most often, however, a lawyer charges by only one of the three methods.

But how is a client to know whether what a particular lawyer charges for a disability case is the fee normally charged by most lawyers, or is in itself fair and legal?

People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in particular often lack the energy to go "comparison shopping", and in any event not all disability lawyers are even familiar with ME/CFS.

Social Security fee agreements

Most disabled individuals seek one of two forms of disability insurance: 1) Social Security disability, or 2) private disability insurance through an employer. Often a person will be applying for both types of insurance, since private disability policies usually require the person, if eligible, also to apply for Social Security.

Fortunately, attorney fee agreements for Social Security benefits are regulated by Social Security. Generally, attorneys use contingency fee agreements in Social Security cases. A lawyer using this type of agreement is allowed, by law, only to charge 25% of a person's retroactive benefits, up to a maximum of $6,000.  [Ed. Note: The maximum dollar amount may have increased after 2015.] 

A lawyer may successfully petition Social Security for more than the maximum if he or she can document a valid reason for an increased fee. A lawyer may additionally charge reasonable expenses in addition to the fee.

Employee disability policies

More complicated and problematic are fee agreements in private disability insurance cases. These cases usually consist of an insurance company attempting to deny an application for benefits; or a company trying to terminate benefits that are already being paid.

Often an insurance company ignores the individual's legitimate disability and intentionally attempts to deny benefits on a false or dubious pretext. At this point the disabled person needs an experienced lawyer to stand up to the insurance company. The lawyer may be able to pressure the insurance company by asserting the client's contractual rights through one or more letters, by utilizing appeal procedures, or when these options fail, by suing the insurance company.

Often in these cases there is not as significant an accumulation of retroactive benefits as occurs in Social Security cases. Hence, it may be more difficult for a lawyer to obtain his fee by taking a percentage of the retroactive benefits on a contingency basis.

Several other possibilities exist for obtaining a fair fee. One would be an hourly fee; the drawback here would be that most people would not be able to afford more than a few hours of the lawyer's work, and cases which go to trial would entail many, many hours of the lawyer's billable time. Beyond several hours of such time, most people would only be able to afford a lawyer's time if they actually succeed in winning their benefits. So this sets up an intrinsic need for some type of contingency agreement.

Monthly vs. lump sums

Generally, disability benefits are paid monthly as a percentage of the person's former salary for as long as the person continues to be disabled. Sometimes, the benefits can be paid, instead, in one lump-sum payment. This type of payment may be preferred by the insurance company and will not be to the benefit of the disabled person. One does not know how long s/he may be disabled with ME/CFS, FM or other chronic illness. Benefits may be needed for many years.

A lump-sum payment is a one-time payment and as a total benefit might only cover an equivalent of 5 years of monthly payments. A person should be very cautious in deciding to take a lump-sum payment. However, sometimes one is forced to decide whether to take a lump sum or possibly face an insurance company's threat to limit or terminate monthly benefits.

In other types of lump-sum payment cases (such as auto insurance cases), a lawyer will take the case on a contingency basis. This is perfectly possible in a disability lump-sum case. Different lawyers will charge different percentages—often from 25% to 40%. One should determine the average rate and not pay a higher fee than what most lawyers charge.

Again, however, be careful of a lawyer pressuring you to take a lump sum as a way of collecting his fee if you would be better served by collecting monthly payments for as long as you are disabled.

The Worst Case

Now I am coming to the most excessive fee payments that patients with ME/CFS might be asked to pay.

Because of the practical difficulties of collecting a contingency on retroactive monthly benefits, there may be some lawyers who seek to collect what may be an unfair and clearly excessive fee by attempting to take a percentage of the individual's actual ongoing monthly benefits for as long as he or she continues receiving benefits. The lawyer may try to take a percentage of the person's monthly income into the indefinite future, perhaps for 10 or 20 years.

Such a fee agreement might require a person to pay a percentage, say 10%-40% of a person's past, present and future monthly benefits. Think about it. If a person receives a check for $1,000 a month, and the lawyer takes 25%, that's $250 a month or $3,000 per year. If the person were on disability for 10 years, this would be $30,000 or for 20 years, $60,000. And who can afford to have 25% of their monthly income drained off to an attorney for what may be many years?

Is such an agreement fair or legal?

In Massachusetts, attorney fee agreements are legally governed by the Massachusetts Supreme Judicial Court Rule 3:07, 1.5, "Fees." The rule on the legality of an agreement reads: "A lawyer shall not enter into an agreement for, charge, or collect an illegal or clearly excessive fee." Among the factors to be considered in determining whether the fee is clearly excessive are" the following:

1) the time and labor required, the novelty and difficulty of the questions involved, and the skill required to perform the legal service properly...

2) the fee customarily charged in the locality for similar legal services...

3) the amount involved and the results obtained...

4) whether the fee is fixed or contingent."

A fee must bear a relationship to the amount of work reasonably performed by an attorney on a case. Although a contingency agreement rewards the attorney for taking a risk, the actual amount obtained must not be "clearly excessive": the fee must bear some relationship to the actual work performed by the attorney. Any agreement which attaches a percentage of a person's future benefits indefinitely in exchange for a fixed amount of a lawyer's time raises a serious question of excessiveness and enforceability.

Moreover, the amount of work the attorney actually performed must be reasonable, given the nature of the case. (In other words, if most attorneys take 20 hours to complete a case, a lawyer probably cannot bill 100 hours, even if he actually works that many hours.)

For instance, in the example above, a contingency in which the attorney attempts to collect 25% of a disabled person's monthly check indefinitely into the future ($30,000-$60,000) for doing only 20 hours work is most likely to be found by a Court to be clearly excessive, and therefore the agreement would not be enforceable.

Moreover, according to the Massachusetts Supreme Judicial Court decision, In the Matter of Fordham, 1996, the Court cited case law which holds that the above factors for evaluating excessiveness are to be evaluated by the standard of "a lawyer of ordinary prudence."

Additionally, the decision holds that the "test...is whether the fee ‘charged' is clearly excessive, not whether the fee is accepted as valid or acquiesced in by the client."

This means that the client cannot be held to a clearly excessive fee agreement even if he or she signs it. The SJC rule holds that fees "must be reasonable to be enforceable against a client."

Other matters to be wary of

An attorney may attempt to obtain monies unfairly in another way. One such way is to deceptively obtain a fee by claiming unreasonable charges for certain expenses such as "overhead," "disbursements," etc.

If the amount charged in an agreement clearly has no reasonable relation to such expenses, then it may be an attempt to collect a flat fee deceptively. Relatively large amounts for such "expenses" may really be fees which normally should be applied to hourly rates. For instance, if a lawyer asks for several thousand dollars as a "retainer" or "initial payment," the lawyer must take from this amount only what he earns hourly—he generally must return any unearned amount. All charges in an agreement must be explained fully; there must be no deception.

As explained above, the mixing of hourly rates, contingency fees, and flat fees is potentially permissible—but make sure that the attorney justifies in terms of work to be performed any agreement which calls for both a contingency percentage and a substantial flat fee. Remember, an excessive fee is defined as one which bears no reasonable relation to the justifiable work performed on a case.

No matter what the fee arrangement, always ask for an actual accounting of the time the lawyer spends on your case. Determine if the total charges of hourly work bears a reasonable relationship to the fee; also check to be sure you are paid any refund from your retainer for hours not worked.

In my opinion, you should avoid signing an agreement which you believe to be clearly excessive.

And avoid signing an agreement in which you sign away a portion of your monthly income for an indefinite future. The lawyer could be obtaining an undefined excessive amount for what might be a fairly limited number hours worked.

It is more reasonable if your case has to go to Court to agree with your attorney to pay a fixed dollar amount as a contingency fee only if your case is won. The contingency would probably reflect both the lawyer's expected work time as well as a dollar amount for the contingent risk. You then could make partial payments from your benefits for a period of time necessary to payoff that amount. Perhaps some other contingent fee could be arranged; but remember such a contingency should be a fixed dollar amount having some relation to the amount of work actually performed.

If you believe an agreement you have already signed is clearly excessive and therefore unenforceable, you can go to the Massachusetts Board of Bar Overseers and make a complaint.

The Board can terminate any improper agreement and discipline the attorney. The address of the Board is: Board of Bar Overseers, Office of the Bar Counsel, 75 Federal St., Boston, MA 02110, 617-728-8750.

Don't continue to pay an unjustified amount of money for the legal services you obtained.

(This article is not providing legal advice; if the reader has a specific legal question,  s/he should seek competent counsel.)

Disability Insurance Claims: General Information

By George Thompson, Attorney-at-law, specialist in Long-term Disability Insurance

In this article, Attorney Thompson answers eighteen questions concerning filing a disability claim under a private long-term disability insurance policy.

1. What is disability insurance?

Disability insurance is privately owned insurance that pays a monthly benefit to an insured who is either disabled by an injury or sickness in his/her "own occupation," "any occupation," or a modified definition of his/her occupation. 

The insurance can be acquired in the form of an individual policy where the policyholder usually pays the premium or group insurance offered by an employer which insures an individual usually in their capacity as an employee.

 "Own occupation" insurance insures an individual against his/her ability to perform the substantial and material duties of his/her occupation, i.e. a salesman, surgeon, accountant. An individual can be disabled in his/her own occupation and still collect benefits if s/he is capable of working in a different occupation.

"Any occupation" coverage, on the other hand, pays a disability benefit if the insured is unable to work in any occupation for which s/he is suited by  age, education, status in life, income and experience. The standard is similar to that utilized by the Social Security Administration and generally requires a greater degree of impairment.

A policy with "modified occupation" language generally pays a disability benefit if one is disabled in his/her own occupation and not engaged in another occupation.

Finally, some policies have a "Change in Definition" feature ("CID") which states that after a passage of time (12, 24, 36 or 48 months), the disability standard changes from "own occupation" to "any occupation." This is a typical feature of a Group Disability Insurance policy. 

The impact of the CID is to elevate the degree of disability if one is to remain disabled and eligible for benefits after the "own occupation" period passes. In short, benefits will only continue if the insured is disabled in the "any occupation" period that follows the "own occupation" period.

2. What is ERISA?

The Employee Retirement Income Security Act ("ERISA") is federal legislation enacted by Congress in 1974. The public policy concern underlying ERISA was a concern that too many employers were abusing their responsibilities for administering benefit plans for their employees. It was also believed that the passage of exclusive federal legislation regulating employee benefits would simplify and expand employee benefit offerings since employers would be accountable to the federal government  as opposed to 50 different state insurance departments.

ERISA reserves to the federal government the exclusive right to regulate the vast majority of employee benefit plans, which typically include either pension, life, health, or disability insurance or a combination of the four.

ERISA is a complicated statute that details when an employee benefit plan is or is not subject to ERISA, claim processes, claim review standards, claim administration timelines, and exclusive and limited litigation remedies available only in Federal Court.

Unfortunately when ERISA was enacted into law there were a number of substantive areas of the legislation where Congress provided little or no guidance. Consequently the Federal Courts, including the Supreme Court, had to weigh in to "fill in the blanks." Not surprisingly, there is a lack of uniformity among the various federal circuits on the significance of certain issues, many of which have yet to be addressed by the Supreme Court.

Given the legal and technical nature of ERISA and the variance of its application from federal circuit to federal circuit, it is critical that you give serious thought to consulting an attorney who has significant disability and ERISA significance.

3. What type of information should I bring to my first meeting with an advocate?

  • A copy of the insurance policy;
  • Any forms and letters you have received from the insurance company or your employer's HR Department;
  • The names and addresses of your healthcare providers treating you for your disability condition;
  • A timeline outlining the start of the disability and your treatment dates;
  • The name and address of your employer and your supervisor/manager; names of co-workers who can verify what your job was and perhaps corroborate your decline in performance because of your disability;
  • The names of any individuals you believe could provide information in support of your claim.

4. If I am receiving disability insurance due to a workplace injury, can I also get Social Security Disability and/or Workman's Compensation Insurance?

Yes, but depending upon the language of the disability policy, the benefit amount paid under the disability policy might be offset by the amount of benefit you receive from either Social Security or Workman's Compensation.

The offset feature is a typical feature of a Group Disability policy and not as typical with an Individual Disability policy. Even when allowing offsets, the policies generally guarantee a minimum amount of monthly benefit that cannot be offset. Workman's Compensation insurance, Social Security disability and private disability insurance are not mutually exclusive. They can be collected at the same time with or without offsets.

Finally, private disability insurers may require you to sign a reimbursement agreement if your policy has an offset feature that would allow for them to collect retroactively a percentage of benefits paid to you in the past and present that may be subject to a future retroactive offset such as a delayed Social Security Disability Award.

5. Can private Disability Insurance drop my coverage after I receive Social Security Disability?

It depends upon the language in the insurance policy or insurance plan. This is not a typical feature of private insurance policies regulated by the state and sold to the general public.

It might be a provision in a self-insured plan. The "dropping of coverage" differs from the offsetting of a disability benefit because of the receipt of Social Security benefits, discussed in #3 above.

6. Can I receive disability insurance benefits when I am unemployed?

It is possible to receive benefits under an individual disability policy if one becomes disabled while unemployed. These claims are complicated given the general rule that a disability must be measured against an occupation one is engaged in at the start of disability.

There are times, however, when an individual may be laid off and job hunting or perhaps left the workforce temporarily to care for a sick loved one. In these situations, the disability insurer should look for evidence as to whether the policyholder intended to return to the occupation or had they abandoned the occupation (i.e. retired).

If the circumstances reveal that the insured intended to return to the occupation, the insurer will likely measure the disability against that occupation.

Please note that some individual disability policies may have a termination of coverage feature that provides that after a certain age, such as 65, the coverage ends if the insured is not working a specified number of hours per week.

Finally, the issue of unemployment will likely have a more dramatic effect in the context of group disability coverage, since generally group disability insurance for employees ends once they are no longer employed by the employer who provides the group coverage. This may not be applicable, however, if the group disability coverage offers a conversion benefit allowing the departing employee to convert the group coverage into individual coverage.

7. How long will private disability insurance pay if I am disabled for life?

The policy language will state whether the benefit term is for a fixed duration, i.e. 48 months or to age 65, or whether it is lifetime benefits.

If you qualify for lifetime benefits, you will be paid for the remainder of your life whether that is 34 days, 34 weeks, 34 months or 34 years.

Individual disability policies sometimes have a death or survivor benefit as well, which can be paid to your spouse or estate if you die while on claim.

8. Would I need a lawyer or advocate to handle my claim?

That is a personal decision unique to each person seeking disability benefits.

The advantage of a lawyer/advocate at the outset of the claim process is that s/he can minimize your time interacting with the insurer and obtaining all the relevant information needed to assess your claim for benefits. If s/he is well versed in insurance law, the lawyer can help you better understand your rights under the policy.

An example would be the lawyer's familiarity with ERISA and expertise in knowing that you are timely submitting a complete packet of information in support of your claim.

The downside to a lawyer/advocate at the claim stage is that you will have to pay the lawyer/advocate.

9. What public benefits may I be eligible for?

Depending upon the significance of your disability and your residence, you may qualify for Social Security disability benefits and Medicare Health coverage from the Federal government.

Some states, such as California, have a state disability insurance program as well.

10. Can I sue the insurer when I receive a denial, or must I exhaust the administration remedies offered by the plan or insurance policy?

Generally you must exhaust the administrative remedies under a Group Insurance claim unless it is apparent that an appeal would be futile given the content of the denial letter.

11. What type of information should I expect in a Denial Letter?

A thorough and balanced explanation of the relevant insurance policy provisions and applicable evidence in the claim file that led to the denial conclusion.

If the claim was denied because there was certain information that should have been submitted with the initial claim submissions, the insurer should describe the type of information that would be helpful in perfecting the claim that would allow for its payment.

If it is a group disability insurance claim, there must be ERISA Appeal rights and time-frames contained in the language.

Some state insurer departments, such as California and New Hampshire, require the insured, who is a resident of that state, to receive language advising of his/her rights to contact his/her state insurer department if s/he believes s/he has been mistreated.

Generally there is no mandated legislative right to a claim denial appeal for individual disability policies, although individual disability insurance carriers often offer an appeal.

12. What are my rights during the Administration Appeal process?

This question addresses the rights of an insured under an ERISA-governed group disability insurance policy or plan.

Generally, you have the right to receive all pertinent documents or the complete administrative record (claim file) if you ask before you submit your appeal.

You have the right to a full and fair review by a different claim examiner.

13. What initial steps should I take if I receive a Denial of Benefits?

Make sure to read and understand the letter.

Call the author of the letter if any part of it is confusing or incorrect.

Calculate your ERISA deadlines.

Request in writing that you wish to appeal the denial and you would like the insurer to send you all pertinent documents.

14. What are common reasons given for denials?

They really do vary depending on the circumstances of the claim, but ultimately the insurer has concluded that the claimant is no longer eligible for benefits.

15. What should I send with my appeal?

All the information that you believe will assist in getting the decision reversed.

16. What should I do if my disability insurer offers me a lump sum settlement?

It would be wise to consult an attorney experienced in these matters.

A lump sum settlement is not a contractual benefit. From time to time, however, an insurer may offer a lump sum to pay you to give up your claim (but keep your policy), or to give up your claim and policy.

Here are some of the possible issues, by no means exclusive, that you should address when considering a lump sum:

  • The "upside" of a lump sum settlement is that you can collect a greater amount of money now as opposed to collecting a benefit monthly for a specified period of time. You can generally return to any form of work, assuming your health permits it and there is a satisfying job awaiting you, without the need to continue to complete monthly claim forms for the insurer.


  • The "downside" is that you may be forfeiting significant contractual rights to continue your current claim or a future claim. Once you surrender your policy, you no longer have a policy to protect you in the event you are disabled again. Similarly, once you have submitted a claim and collected disability benefits with Insurance Company AA and later take a lump sum settlement from Insurance Company AA, you may not be able to satisfy the underwriting requirements to get a new disability policy with Insurance Company BB, or you might be at risk for having a future claim of the same nature denied by a different insurer if it is deemed to be a pre-existing condition.


  • You should ask the insurer how they calculated the lump sum. Is it based on an expectation that you'll recover your health in short order? Do they expect to deny the claim in the near future? Ask them what is their calculation of the Present Day Value of future benefits? What interest rate did they use? Did they discount the Present Day Value? What type of discount did they use? What is the amount of the disability claim reserve they are holding on the claim? If you have been collecting disability benefits because of a cognitive or psychological impairment associated with a brain injury, ask the insurer if they'll agree to pay a fixed sum (perhaps $2000) towards your retention of counsel to review the proposal.

Accepting a lump sum settlement is a very significant decision and must be carefully evaluated in light of your current and expected future health, your future employability, your future insurability, and the fairness of the lump sum amount.

17. What should I do if my insurer asks me if I am interested in a rehabilitation program?

Insurers view the successful participation of those they insure in a rehabilitation program as a "win-win" for both the insured and the insurer.

It's a "win" for the insured to the extent the details of the rehabilitation agreement and program allow an insured to return to a productive and satisfying career.

It's a "win" for the insurer if the insured's return to work helps the insurer to reduce or eliminate the cost of paying a claim.

The ultimate decision that you make, however, will be unique to your particular circumstances. You may want to consult with an attorney or advocate experienced in disability claims.

Here are some of the issues you should consider:

a. Does your policy provide an optional rehabilitation benefit? Confirm this with your insurer. Ask them why they are approaching you "now" with an invitation to participate in a rehabilitation program.

b. What consideration is the Insurer Company offering you to participate in the program? For example, will they continue to pay your disability benefits if you successfully complete the program? Will they pay an amount of money that helps you transition into a new career upon completing the program? In other words, would they be willing to pay you a lump sum upon successful completion, assuming you needed some "seed" money to pursue a new occupation or career?

c. Ask your insurer if there will be any negative consequence to the handling of your claim if you simply decline the invitation. Ask your insurer if they will be responsible for any injury or further exacerbation of your disability in the event you are injured during the program.

d. If you are genuinely interested, speak with your attending physician or the medical specialist treating you for your disability to see if there is any medical risk to your participation.

e. Rehabilitation programs are only limited by one's imagination, if both the insurer and insured are both motivated to make it work. Aside from traditional work-hardening programs or specific vocational/career counseling, the insured may be able to negotiate for assistance in pursuing a college or graduate degree that would redirect their career currently stymied by a disability.

18. What should I send with my appeal?

Assuming your initial denial involved an ERISA-governed disability policy, it is absolutely critical that you use the opportunity to appeal to submit a complete record (any and all documentation) supporting your claim.

The reason it is especially important to "get it right" is that under ERISA, if your denial is upheld on appeal and you still disagree with the decision, the administrative record/claim file is "closed" and you are not allowed to submit new information except in rare circumstances. Consequently, any Court that reviews the claim decision will typically be limited only to the claim file in front of the appeals examiner.

ERISA does not allow for witnesses to testify at trial and generally, new information is not allowed to be added to the claim file after an appeal has been upheld.

What you actually submit will in part be determined by the reasons provided to you as part of your denial, and the information in your claim file.

This is why it is critical that upon learning of your denial you ask the insurer for a copy of your claim file and all pertinent documents as discussed earlier. After you review the denial letter, you may want to consider calling the claim examiner and asking him or her "What type of information was missing from my claim that would allow you to approve benefits?"

Assuming your claim was denied under a policy not governed by ERISA, I'd still suggest asking the insurer for the same information.

Because of the seriousness of getting the record right on appeal, you may want to seriously consider consulting an attorney or advocate experienced with disability matters.


Social Security Disability Benefits, Fibromyalgia and CFIDS: What you don't know could be fatal to your claim!

by Scott E. Davis

Scott E. Davis, ESQ. is a Social Security and Long-term Disability Insurance attorney in Scottsdale, Arizona. The majority of his disability practice is devoted to representing individuals with FM and/or ME/CFS. Scott has extensive experience in handling FM/ME/CFS cases and does represent individuals throughout the United States. In most cases he charges a fee only if his client obtains benefits.

The following article focuses on obtaining disability status from Social Security with a diagnosis of fibromyalgia, but the advice (although from 2009) is relevant to those with a diagnosis of ME/CFS.

The American College of Rheumatology (ACR) changed the diagnosis requirements for fibromyalgia in 2010. See Diagnosis of Fibromyalgia for the new requirements. As a result, the Social Security Administration modified its requirements for the documentation of fibromyalgia as a medical impairment in 2012. See [insert link] for an update on the new ruling. 

In the article on obtaining disability with Myalgic Encephalomyelitis/Chronic Fatigue Sundrome (ME/CFS), I analogized obtaining Social Security Disability benefits based on any disease or ailment to the epic battle between David and Goliath. 

Unfortunately, obtaining disability benefits based on fibromyalgia (FM) and/or ME/CFS sometimes can be similar to David versus Godzilla. Why?. . in part due to a lack of education at the Social Security Administration (SSA) and human bias against claimants who appear to be "healthy" compared to those afflicted with a more understood and obviously disabling diagnosis. Indeed, I must confess that three years ago I had never heard of fibromyalgia.

However, the good news is FM and ME/CFS claimants can and do obtain benefits with  proper preparation of their case coupled with an understanding of how the system may view them.

Take a deep breath and relax!!! Before you call SSA to give up, please read on, as this article will give you important (maybe critical) information to use in your pursuit of disability benefits.

As a disability attorney who concentrates on representing those with FM and/or ME/CFS, I find two things interesting about my clients. Most are very educated about their disease(s) while others have never heard of a tender point. Second, almost all have great difficulty explaining to family, friends and other people (that they could care less about!) that even though they appear "healthy," in fact, the diseases have left them debilitated. Many feel as if their disease and the resulting limitations are often not taken seriously. Undoubtedly, every client has experienced the look of disbelief and a raised eyebrow from another person when trying to tell him or her the diseases have literally ruined his/her life.

Thus, similar to the real world, it is not surprising that at the SSA the problems of education and bias can be alive and well. This reality is of paramount importance.  Why? Because it should dictate how one proves he/she is disabled. Please understand I am not saying SSA discriminates, intentional or otherwise, against FM and/or ME/CFS claimants; but rather that your claim (especially if you are under 50 years old) may be viewed by SSA or an administrative law judge (ALJ) with a raised eyebrow.

FM and/or ME/CFS are no strangers to SSA and ALJs who decide whether you are disabled; however, that doesn't mean they understand or appreciate the diseases.

In what may be considered the landmark FM disability case, Preston v. Secretary of Health and Human Services, 854 F.2d 815 (6th Cir. 1988), a Federal Court of Appeal unknowingly provided a framework within which SSA and ALJs should evaluate FM (and logically ME/CFS) disability claims.

In May 1997, nine years after working at bureaucratic breakneck speed, a Regional Chief Judge issued a memorandum to other ALJs which provided a framework to follow at a disability hearing before a diagnosis of FM is accepted. Although the following will focus on FM, I believe it can also apply to ME/CFS. Ignoring these factors could be fatal to your claim.

1. Was the diagnosis made by a rheumatologist or other specialist familiar with FM?

I am always surprised (and skeptical) when a person calls or comes to meet with me and says s/he has FM and/or ME/CFS, but it was not a rheumatologist or other specialist who made the diagnosis. Other medical doctors can and do make the diagnosis of FM, but many use the terms FM/CFS generically and more as a description of a patients' symptoms rather than making the diagnosis following the American College of Rheumatology's (ACR) 1990 Criteria for Fibromyalgia [which has now changed as of 2010—Ed] or using the CFS1994 Centers for Disease Control (CDC) criteria.

If you learn one piece of information from this article, let it be this: It is critical your diagnosis is either made or confirmed by a rheumatologist or specialist.

If not, you risk having SSA and/or an ALJ rejecting the diagnosis altogether, which could be fatal to your claim. Whether or not you (or your diagnosing doctor) agree with SSA's position, it is senseless to try to fight the system. Addressing this issue is always my first priority in representing a FM/CFIDS client.

Second, if a rheumatologist has not made the diagnosis, find one (a.s.a.p.!) who is board-certified and sympathetic to your diagnosis and disability claim.

Eventually, you or your attorney will need to obtain opinions from him/her regarding how the diagnosis was made along with your inability to work. An unsupportive and/or uncooperative rheumatologist (or any treating physician for that matter!) can create real and sometimes insurmountable obstacles to winning your case. Why? Because you can bet SSA will  have its own doctor who will tell the ALJ you are able to work. 

How do you find a supportive doctor? FM/CFIDS support groups are a good place to find a referral.

2. Has the claimant's physician(s) systematically attempted to eliminate other diseases before making the diagnosis of FM?

A frequently heard comment made by non-FM specialists, SSA case workers and even federal courts is that "FM is a diagnosis made by exclusion of other diseases." Of course, the implication is that doctors really don't know how to diagnose FM and that somehow invalidates the fact the disease exists. Such a belief shows unfamiliarity with the ACR 1990 [now ACR 2010—Ed.] criteria for diagnosis.

However, it reinforces why a specialist should make the diagnosis after a physical exam (finding and documenting tender points) and blood work excludes other rheumatic diseases which may share symptoms with or mimic FM/CFIDS. That process provides validity to the diagnosis.

3. Are the patient's complaints are typical for the disease?

This question is usually answered by reviewing the patient's medical records and comparing them to the ACR criteria. Hopefully, the medical records provide detail regarding the patient's symptoms or complaints. FM/CFIDS specialists almost always document the defining symptoms. 

For FM patients it is also critical that a physical examination was performed confirming the existence and location of the classic tender points [and now the Widespread Pain Index and the Severity Scale of Symptom scores—Ed.]. Without documentation, the diagnosis may be subject to attack.

4. Has the claimant been referred to physical therapy or a pain clinic for treatment? Has pain medication been prescribed for mild or severe pain and has the  claimant received pain relief through injections into focal tender points?

This is the "exhaustion of remedies requirement." 

I always counsel clients to undergo and at least try any treatment the specialist prescribes, including non-traditional treatment.  Why? Because you do not want to be at a hearing before an ALJ who is wondering whether your condition would be as severe if you had followed your own doctors' instructions.

Moreover, the SSA's doctor will usually tell the ALJ that your symptoms would improve (of course, allowing you to work) if you would undergo some type of treatment. Don't give the ALJ an open door to deny your claim.

Exhausting each type of prescribed treatment is good for your health and your disability case. After doing so, your testimony will be more credible because nothing exists (including an injection!) to alleviate the severity of your symptoms. Moreover, the severity of your condition will be supported by the fact that you have tried everything to find relief.

Trying to stay within the framework provided by the Preston case should increase your odds of winning and avoid any unfortunate surprises.

Additional tips to keep in mind

Involve your treating physician! Tell your doctor as soon as possible you have filed a disability claim. If s/he is lukewarm to the idea, try to find another doctor. Unfortunately, there are many doctors who could care less about a patient's legal issues. Do not get stuck with one! As an attorney, nothing is more frustrating than a doctor with no backbone or worse, s/he refuses to be involved at all.

Medical records can be your best or worst friend! It is your job to be a very detailed historian with your doctor regarding the severity, frequency and nature of your pain, fatigue and other symptoms.

I tell clients to convey information regarding pain, fatigue, sleeplessness, flare ups, days spent in bed, inability to do simple daily activities and brain fog problems. Tell the doctor you want the information in your records.

Hire an attorney who has experience handling FM/CFIDS cases!

During initial meetings with FM/CFIDS clients I sometimes say to myself  "If I didn't know better, I'd say this 40 year old woman looks perfectly capable of working!." It is only through an understanding of the diseases and talking to clients that I realize they will pay for the trip to my office for the next couple of days! Through understanding comes compassion and the ability to convey the effect the diseases have on a client's life to SSA or a judge. 

Your attorney should at least be familiar with the 1990 ACR [2010 ACR—Ed.] and/or 1994 CDC criteria and be able to talk intelligently with your doctor.

Remember: people obtain disability benefits every day based on FM/CFIDS. Do not quit! Keep fighting! Use this article as the cornerstone to preparing and hopefully winning your case.


See the article " Obtaining Disability with CFS." 

Notice about names

The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS. 

Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.