Tips for FM Patients Applying for Social Security Disability

Ed Swierczek, a senior claims representative for a company that assists disability claimants, in 2011 provided some good advice for fibromyalgia patients who are applying for Social Security.

According to Mr. Swierczek: " is still vital that patients let their doctors know about their symptoms at every visit...Let them know you are having muscle pain, let them know you are not getting restful sleep. Encourage your doctor to include in his or her physical examination the requisite tender point examination if you have not received one. This is important because the [Social Security] adjudicators want to see some evidence of clinical findings to help establish a diagnosis. Having the appropriate tender points adds further credence to the presence of FMS [fibromyalgia]."

Social Security's criteria for establishing fibromyalgia as a medically determinable severe impairment includes:

  1. Evidence of widespread pain for at least 3 months;
  2. Pain present on palpation in at least 11 of the 18 tender  point sites as identified by the American College of Rheumatology and the  Centers for Disease Control;
  3. Evidence of morning stiffness and/or stiffness after sitting for a short period of time;
  4. Fatigue is present.

At each visit your doctor should note each clinical symptom and its severity, so that a contemporaneous, written clinical record will be available to Social Security as evidence of the chronicity and severity of your illness and disability.

(Source includes, 5/8/11)

Disability Discussion--Barbara Comerford, ESQ.

Barbara Comerford, ESQ, was one of the speakers at the New Jersey CFIDS Association conference held on October 17, 2010. She has a practice specializing in disability law in the jurisdiction of New York and New Jersey.

Through her work, Ms. Comerford has become a specialist in ME/CFS disability and spoke to the issues ME/CFS patients need to know.

Previously, she has held a post as a board member of the NJ CFIDS Association, The CFIDS Association of America (CAA) and The American Association of Chronic Fatigue Syndrome (AACFS) before it became the International Association of Chronic Fatigue Syndrome (IACFS), and helped work on the physician’s manual that the NJ CFIDS Association published.

Although many patient organizations and some physicians refer to this illness as CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome), the government’s official name is still Chronic Fatigue Syndrome (CFS) and that is the name Social Security Administration (SSA) uses. Ms. Comerford concentrated her speech on the high points regarding Social Security Disability Insurance (SSDI) and Long-term Disability (LTD).

Social Security disability process

Ms. Comerford gave some background on why the SSA ruling SSR 99-2p was issued on April 10, 1999. (N.B. This ruling has been superceded by SSR 14-1p "Titles II and XVI: Social Security Rulings: Evaluating Claims Involving Chronic Fatigue Syndrome" of April 3, 2014. See the article "Major 2014 Social Security Ruling Establishes New Standards for Documenting ME/CFS Social Security Disability Claims/Reviews"  for more detail.)

According to the SSA, the purpose of the 1999 ruling was to “restate and clarify the policies of the Social Security Administration for developing and evaluating title II and title XVI claims for disability on the basis of Chronic Fatigue Syndrome (CFS), also frequently known as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).”

She explained that the CFIDS Association of America (CAA) had requested guidelines from the SSA for adjudicating CFS cases when it was learned that an Administrative Law Judge (ALJ) had written a memorandum to the chief ALJ basically stating that the CFS cases could never win because there was no objective medical basis for the diagnosis.

At the time, the SSA Commissioner, Susan Daniels, wrote a response basically saying just because the science has not caught up with the illness does not mean these people are not disabled and that the SSA needs to look at these cases slightly differently. SSR 99-2p is the guideline the SSA created for evaluating CFS cases. Every disability case is reviewed according to a 5-step process regardless of illness type. Ms. Comerford has written many articles on this process. To learn more, go to her website at www. where her articles are posted.

The five things evaluated for every claimant under the Sequential Evaluation Process require:

  1. That you not be engaged in substantial gainful activity;
  2. That the medical impairment be documented with medical signs and lab findings;
  3. That it be determined if an applicant’s illness meets or equals an “Impairment Listing”; Ms Comerford explained that this listing has 14 bodily systems and CFS is not among any of them, causing CFS cases to be evaluated in subsequent steps;
  4. That you cannot perform your past work;
  5. That the SSA has to prove there are no jobs that the claimant can do at any level, in light of his or her age, education, work experience and the limitations imposed by CFS.

Ms. Comerford explained why the SSA looks at the above list and what they are looking at with regards to CFS patients. Under SSR 99-2p, the SSA is looking at:

  • Can the patient satisfy the Fukuda 1994 Definition of CFS that the Centers for Disease Control & Prevention (CDC) uses?
  • Does the patient have medical evidence in lab work that something is wrong?  Some but not all examples are: autonomic dysfunction; postural tachycardia; neuropsychological testing which can show the slowed cognitive function or slowed processing of the brain; a positive tilt table test; Epstein Barr Virus (EBV) activation; Human Herpes Virus 6 (HHV6) activation, Fibromyalgia tender point exam.
  • Is there clinical longitudinal documentation by the physician that shows there is an impairment in functioning? This is CRUCIAL and the problem is most doctors DO NOT keep these types of records.

She also pointed out that there are two things that are important for the patient to have:

  • a physician willing to do the NECESSARY paperwork required for SSDI (most won’t);
  • a physician who BELIEVES in the patient and the illness and is willing to fight for the patient.

Ms. Comerford said that as expensive as it is, and most likely not covered by insurance, neuropsychological testing is one of the best ways to show slow brain processing and the cognitive impairment associated with CFS before an Administrative Law Judge (ALJ).

It is important for the patient to have a good lawyer who not only understands this illness but who is also able to frame the case in a manner the ALJ can understand. For instance, the lawyer may be able to make the case that decreased brain and cognitive function can impact the claimant’s ability on the job. This then would help document a disability. Or a patient who has Orthostatic Hypotension and can’t sit or stand up for more than a few minutes at a time would also be considered as having a disability.

Private long-term disability insurance process

Ms. Comerford then explained the process that occurs when a patient files for Long-term Disability (LTD) by virtue of his or her employment. This is a much more difficult standard if the plan under which these claims are paid lets the fiduciaries (the companies) who make the decision on a claim do so “in their discretion.”

She stated that this language “in their discretion” is almost always in a company’s contract and what it means is that the decision of disability is up to the insurance companies. And, in many cases they will turn you down.

If the case goes to court, and many do, the insurance company’s lawyer can present pictures of the disabled patient out mowing the lawn, carrying groceries etc. because the insurance investigators are out there, and are known, at times, to investigate people using a variety of methods, including long lens cameras, talking to neighbors, etc.

Ms. Comerford knows that on a good day, patients have a tendency to do all that is possible because they do not know when another good day will come around. Insurance companies fighting disability use every trick they legally can. Having a disability lawyer who does not understand how this illness works and how to fight the insurance companies is very challenging for the patient. Having a lawyer who can explain the illness and the unsustainability of it goes a long way.

Ms. Comerford also said conflict of interest still matters to the courts. In some cases where an insurance company under ERISA both pays the proceeds (i.e. benefits) and determines eligibility for benefits there can be an inherent conflict of interest. Then the patient’s lawyer must show the court that the process in which the case was evaluated was very, very faulty to the point of abuse of “their [the insurance company’s] discretion.”

One way that this can be shown is to present enough medical documentation along with strong evidence that those medical findings limit the patient’s ability to function.

Then, the court also evaluates whether the insurance company based its decision on their nurse’s paper review; the opinion of their (the insurance company’s) doctor who has no CFS background; as opposed to the recommendations and opinions by a physician who knows this illness. The courts will consider this issue because CFS and FM require a tremendous amount of specialization.

Another situation the court will look at is if the insurance company is not paying any attention to a favorable SSA ruling for the patient. Most insurance companies require the patient to file for SSDI because their financial exposure is less if they are paying the claim. Once the person gets awarded SSDI, the insurance company may claim any “overpayment” they have made that overlaps with retroactive Social Security benefits.

If the patient ever has to go to Court to appeal an LTD rejection, his or her lawyer could argue that the federal government—the Social Security Administration—has determined the individual is disabled.  Courts will also look at whether the insurance company took into account the unpredictability of this illness, which Ms. Comerford stated as one of the worst and most disabling symptoms of this disease, as well as the unsustainability of activity and post-exertional malaise.

The unpredictability and unsustainability are hallmarks of this illness, and as she said “What employer wants an employee that cannot predict that they can show up for work from one day to the next?” If the insurance company ignores the unsustainability and has a video showing a patient lifting a twenty-pound bag, chances are tomorrow the patient will be in bed all day. It is that unsustainability that is important for the court to understand.

What the patient can do

Ms. Comerford stressed that it was a good idea for the patient to keep a daily log of the medications he or she takes and the activities he or she engages in. It may well be the best documentation the patient has. It could show that upon short activities, such as taking a shower, the patient has to get back into bed for an hour or so to recover from that activity.

Unfortunately, it is not uncommon for a patient to be unable to keep such logs because it becomes just one more thing that “has to be done.” However, it is an important thing to do. As good as a patient may physically look, the log shows the instability of functionality for the patient.

The biggest take away from this speaker was the unsustainability of activity for CFS patients and how that helps with attaining disability status.

If the patient and doctor can show (through doctor’s notes or patient logs) that the patient can not sustain normal activity, and has some medical testing showing abnormalities, it helps the CFS patient gain disability status. Ms. Comerford closed by saying that it all begins and ends with the medical documentation.

More resources

Ms. Comerford's website has many other articles on disability law topics.

For a detailed information of all aspects of disability as it relates to ME/CFS and FM, including our Disability Handbook, please see our section on Disability.

For an update on the Social Security requirements for ME/CFS disability status as of April 3, 2014, see the article "Major 2014 Social Security Ruling Establishes New Standards for documenting ME/CFS Social Security Disability Claims/Reviews." 




The Massachusetts CFIDS/ME & FM Disability Handbook

The information in this booklet is invaluable to those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) who cannot work and are seeking financial stability. The Table of Contents is displayed below.

This booklet has been revised in 2021. However, some detailed information such as the income and asset eligibility for SSI change periodically. The revised booklet contains the new 2014 Social Security CFS Ruling which is now used for evaluating ME/CFS disability cases. The booklet also contains information on the 2012 Social Security Fibromyalgia Ruling. Note: Social Security Administration still uses the term "CFS" rather than ME/CFS.

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Table of Contents


  • Eligibility for Social Security Disability Programs
  • Disability Eligibility Standard for SSDI and SSI
  • Financial Eligibility Standards for SSDI
  • Financial Eligibility Standards for SSI
  • Emergency Aid to the Elderly, Disabled & Children Program (EAEDC)
  • Food Stamps and Fuel Assistance

How to Apply for Social Security Benefits if You Have Chronic Fatigue Syndrome

I. The Application Process

II. When to Obtain a Lawyer

III. When to Apply for Disability

IV. Your Doctors' Letters to Social Security

V. Your Description of the Disabling Effects of Your Illness

VI. Contacting your Congressman about your Social Security DisabilityApplication

Appendix I: The 2014 Social Security Ruling for the Evaluation of CFS Disability Claims

Appendix II: Obtaining a CFS Diagnosis Using the 1994 CDC CFS Definition

Appendix III: Documenting Fibromyalgia to Social Security

Appendix IV: Helping Your Doctor Document Your Illness to Social Security (and to Other Disability Carriers)

A. Memo from a disability lawyer.; Recommended documentation of CFS Disability Claim to be Submitted to Social Security and/or for Private/Employer Disability

B. Checklist of ME/CFS Symptoms

C. Some Tests to be Conducted to Help Determine Objectivity of CFS and/or Disabling Symptoms

D. Excerpts from previous Social Security Administration Documents which provide guidelines for documenting CFS disability.

E. Incapacity Checklist

F. Sample Doctor's Letters Documenting CFS Disability

G. Helping Your Doctor Prepare Your Medical Report

Appendix V: How to Prepare for an Administrative Law Judge Hearing (3rd Stage)

  • 3 Memos from a disability lawyer.
  • Updated Specific Suggestions on Preparing for the Social Security Hearing
  • Necessary Elements in Preparation for Social Security Appeal Hearing of a CFS Disability Case and Further Suggestions

Appendix VI: The Use of a Diagnosis of Depression or Other Mental Impairments in a CFS Social Security Application


A. The "Legal Services" Position: The positive use of secondary depression and mental impairment in a disability application.

  • Problems which may develop between CFS patients and their attorneys regarding documentation or submission of mental impairment, diagnoses.
  • Issues of cognitive dysfunction and neuropsychological testing

B. The case for avoiding, if possible, the use of depression or other mental impairment diagnosis a CFS disability application.

Appendix VII: Landmark Federal Court Decision

  • Establishes Right of Persons Diagnosed with and Disabled by CFS to Obtain Social Security Benefits.
  • Additional Federal Court decisions granting CFS and fibromyalgia disability claims.

Appendix VIII: Disability Case Reviews

Appendix IX: Other Disability Insurance Programs

I. Disability Insurance through Your Employer

II. Disability Retirement Benefits for State Employees and Teachers (Massachusetts)

Addendum I: Plans for Achieving Self-Support While Receiving Supplemental Security Income

Disability Resources

General disability resources

State and Local Disability Commissions—These agencies assist disabled persons with a variety of resources and programs.

Many cities and towns have disability commissions, social service departments, or civil rights commissions that can assist you. To find out about this type of assistance in your community, call your city or town hall.

Massachusetts disability resources and agencies

The Massachusetts Association for the Chemically Injured is a non-profit statewide support, education, and referral organization for people with multiple chemical sensitivities and those concerned about chemical injury. For more information, contact MAC at P.O. Box 1171, Concord, MA 01742 or 508-681-5517.

The Arthritis Association, Massachusetts Chapter provides information, referral, support groups, counseling, education, and exercise programs to people with fibromyalgia (FM). Contact the Arthritis Foundation at 29 Crafts St., Newton, MA 02158; 617-244-1800 or 800-766-9449.

The Massachusetts Office on Disability— Tel 1-800-322-2020. This agency can provide information, referral and advocacy for a wide variety of issues and problems facing disabled individuals. The Office provides direct advocacy for individuals who are having problems obtaining services from the Massachusetts Rehabilitation Commission, or who are suffering various forms of job discrimination. Information, referral and advice are provided for many other problems, including housing, medical assistance, transportation, independent living, and other needed services.

Massachusetts Rehabilitation Commission— Tel 617-727-2183. The major function of the Commission is to provide vocational rehabilitation services to the disabled. If you are determined to be disabled by the Commission, you may receive extensive training, education, rehabilitation and support services for future employment more compatible with your disability. (You can receive assistance from the Commission if you are collecting Social Security benefits or if you are disabled and not receiving such benefits.)

The Commission also offers homemakers/chore services to assist the disabled (see above section).

The United Way's First Call for Help Information and Referral Services—Check your local directory for the phone number, as it varies by region. First Call for Help is a comprehensive referral service for those in need in a crisis which can help you find assistance for a broad range of problems, particularly in the following areas:

  1. Housing: crisis assistance for mortgage, rent and utilities emergency and transitional shelter, legal help with eviction
  2. Assistance in finding health care
  3. Assistance in obtaining emergency food and health care
  4. Counseling: referrals for emotional and family problems.

The Disability Law Center—Tel 617-723-8455. The Disability Law Center in Massachusetts is a statewide legal advocacy, information and referral agency for individuals with disabilities. The center does not usually provide individual legal representation, but it can assist in providing attorney referrals.

Disability lawyers at the Center can answer by phone more difficult technical and legal questions concerning many aspects of the Social Security Disability programs. If you have been denied unemployment compensation because you cannot work full-time and can only work part-time due to your disability, the Center may be able to assist you obtain benefits. Also if you cannot continue to do your present job due to your level of disability but could still function within your company at reduced hours or in another capacity, the Center can advise you as to your legal right to job accommodation.

Health Care for All, Boston, Massachusetts—Tel 617-350-7279. Assists individuals without health insurance to learn about various insurance options and how to go about obtaining insurance.


Long-term Disability

When a Worker Is Too Sick to Continue Working Under Any Circumstances

If You Have Disability Insurance through Your Employer

If you are covered under an employer disability plan and become disabled while working, you can apply for disability under that plan. Many companies offer both short-term and long-term disability.

Short-term disability is usually for six months—on the theory that a disability may be relatively short and the person can return to work. Sometimes, short-term disability is covered by the employer, and sometimes by an insurance company. So to start, you go to your employer (usually Human Resources) and apply for short-term disability. Some companies offer no short-term disability, so the person can only take sick leave and vacation time during the time period before s/he can apply for long-term disability.

When the short-term disability or waiting period is about to run out, you then apply for long-term disability (LTD). LTD is usually managed by an insurance company—you are actually covered by a long-term disability insurance contract that sets out your rights, responsibilities and benefits—as well as the prerogatives of the insurance company to provide, limit, or terminate your benefits.

The disability standards for LTD policies often differ. Most policies do not require you to be totally disabled (meaning that you can't work at all). Normally, to be accepted under such policies, you will be unable to do your present job, or comparable work requiring your current level of education and skills. You might still be able to do much different and easier part-time work and still be eligible to receive long-term disability benefits. On the other hand, some LTD policies require that you cannot work at all.

Of utmost importance—You should apply for short and long-term disability benefits while you are still on the job. If you think you are about to be fired or laid-off because of your illness, apply for benefits immediately. Your rights to benefits are much clearer if you apply while still an employee. If, for some reason, you have left the job, and need to apply for benefits, you should contact the employer and ask to apply. You may need to check with an attorney. It will be harder to make your claim, but you should definitely do so.

In all cases, the medical documentation provided by your physician(s) as to the diagnosis, severity, chronicity, and disabling effects of your illness is critical to your acceptance for short and long-term disability. Your doctor must agree that you have an illness that prevents you from working under the terms of the disability contract. (You should obtain a copy of the insurance contract.)

Your doctor must be willing to document through medical records, office notes, medical letters and reports, and by filling out the insurance company forms, that you are disabled and cannot work. If you do not have a doctor who will do this, you should find a doctor who will. Unfortunately, sometimes a physician becomes unwilling to spend the time or "go out on a limb" to support a disability claim. But usually, if a doctor has known you for sometime as a patient and realizes that you have become chronically ill, he or she will want you to stop working to protect your long-term health.

Normally, the LTD insurance company will want you to see one of their physicians or other health care examiners. You may have to fill out various reports. You may find the effort and the demands of the insurance company taxing, but pace yourself and do your best in making your application. If the company seems not the most friendly or doesn't seem the most reasonable, remember the insurance company is in business to make a profit.

But also remember, you have a right to a fair deal with the insurance company. Ultimately you paid insurance premiums.

If at any point you are turned down for benefits, you should immediately obtain the assistance of an attorney who knows how to assist you with the appeal procedures provided by the insurance company and by federal and state law. Often the insurance companies will simply turn people down hoping they will give up. However, if the person applying retains an attorney after being turned-down, then the insurance company may consider the individual's claim more seriously than if no attorney were involved. Sometimes it may take a minimum amount of representation to obtain the insurance benefits on a first appeal.

Individual disability policies

Some individuals have themselves purchased a long-term disability policy—a policy of their own, in their own name. If you become disabled under the terms of your policy, you should apply for benefits in the same general fashion as discussed above.

Health care benefits under LTD policies

In many cases, individuals receiving LTD benefits can buy Medical Insurance under the federal COBRA law. This allows purchase of the insurance at a group rate, although the entire cost normally must be borne by the individual.

After a certain period of time, the COBRA allowance may expire and other health insurance options will have to be pursued. (See our section on Medical Insurance Programs for other options.) 

Long-term Disability Insurance and Social Security Disability

Most LTD policies require an applicant to also apply for Social Security Disability Insurance. Under most policies, if a person is accepted for both LTD and Social Security, the insurance company will deduct the Social Security payment from the monthly amount the company pays.

So if you are approved for both, you will not get more than the LTD amount. Usually the LTD amount is higher than the Social Security amount.

However, with Social Security, after a two-year waiting period, the individual becomes eligible for Medicare. Some people will say, "Why should I persevere in applying for Social Security if it will only be deducted?"

There are several reasons. If Social Security turns you down, then the insurance company may use this as a reason to question your continuing eligibility. Reversing this logic, if Social Security approves your application, you can use the finding of the federal government as an argument to the insurance company of your continuing disability.

Also, if you are approved for Social Security disability, then Medicare is a decided benefit if you have no future continuing health insurance.

More resources

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

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

Disability Discussion--Barbara Comerford, ESQ

Disability Insurance Claims: General Information

Dr. Gudrun Lange Reviews Neuropsychological Testing for CFS and FM

Long-term Disability—Advice from Attorneys

Update for patients with ME/CFS, FM or Lyme disease on important issues issues affecting Long-term Disability Insurance and Social Security


See also Employee Disability Insurance, Housing/Other Essential Needs, Job Accommodations, and Medical Insurance Programs