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.

Medical Insurance Programs

This section covers Medical/Health Insurance Programs for the Disabled, including Medicare, Medicaid, COBRA, the Affordable Care Act, State insurance programs, and drug assistance programs through pharmaceutical companies.

Medicare and COBRA


COBRA is a federal law that allows persons on Long-term Disability (LTD) or Unemployment Compensation to purchase medical insurance at a Group rate, thus reducing the cost one would pay for an individual policy.


Medicare is the federal health insurance system for people on Social Security Retirement and Disability Insurance.  For those on disability insurance, an individual becomes eligible for Medicare two years after the date s/he became disabled as determined by Social Security. For instance, Social Security might determine a person became disabled one year before they applied. It may actually have taken eight months for the application to be approved, so after approval the wait might actually only be four months.

Once the waiting period is over, an individual will receive a letter of notification of eligibility for Medicare. No matter what a person does next, s/he will automatically be signed up for Medicare Part A, which is the hospitalization portion of the insurance.

What happens next with the other portions and options of Medicare becomes the decision of the individual. This next section will summarize the various choices involved in obtaining Medicare.

Obtaining Medicare means making a choice between two different Medicare Medical Insurance systems: Original Medicare, and Medicare Advantage.

Original Medicare

Original Medicare works directly through Social Security Medicare and consists of Part A—Hospitalization; Part B—Doctors' visits and outpatient services; and Part D— Prescription Drug benefits.

Under this Original Medicare system you can choose any doctor who is "Medicare approved." About 80% of all doctors in the U.S. are Medicare approved. Most doctors affiliated with hospitals take Medicare patients. Doctors are paid a fixed amount for each medical service as determined by Medicare. They agree, under most circumstances, to accept the fee Medicare will pay. These fees are generally lower than what a doctor will charge privately on a fee-per-service basis. Yet doctors participate because so many patients are covered, or because of medical institutional imperatives.

Unlike a Managed Care system or HMO you can choose any doctor or specialist that you wish to see. There is no necessity for choosing an in-plan doctor, or needing a plan referral for a specialist. In many cases, you can go to a doctor yourself; in other cases you simply need your own doctor to say that a procedure or a visit to a specialist is "medically-necessary." This is one of the advantages of Original Medicare as opposed to Medicare Advantage; see below.

Medicare Supplement policies

Part A and Part B cover only 80% of covered medical costs. Hence a person would be required to pay 20% of most medical bills. To meet these extra costs, private insurance companies offer what are generically called Medicare supplement policies. These policies for a premium cost paid by you cover the 20% gap, as well as deductibles, and offer some extra services as well. To be effectively covered, one should, if possible, buy a Medicare supplement policy.  Under Medicare Parts A and B, with a Medicare supplement policy, most medical procedures and visits are covered.  Institutional nursing home care, except for skilled nursing care, is not covered.

Prescription Drug Coverage—Part D

The last part of Original Medicare is prescription coveragePart D. When you are accepted by Medicare, you will be given an opportunity to purchase, for a monthly premium, Medicare Part D prescription drug coverage from a private insurance company. You should do so if at all possible, since to do so at a later time incurs significant financial penalties. Some companies offer only one plan; other companies have different plans at different costs which offer a either decreased or increased benefit options.

Most prescription drug plans offer three levels of coverage. The costs can vary considerably amongst the Medicare contracted companies and by plan selected.

These plans use formularies (preferred drug and price lists) and a tier system, usually three tiers, with an additional top tier for specialty drugs (advanced treatments for illnesses like cancer or MS) which are paid at a determined percentage of cost. It is important to compare coverage for your routine medications under several company plans, because some plan formularies can be quite limited.

Co-payments can also vary by plan and increase by each tier, and those in the highest tier can be quite costly.  This is another important consideration or even challenge when doctors might like to try you on some of the newly released drugs.  Bring your formulary book with you to appointments, so you can determine whether you can afford a particular medication.

There is cap on the money spent by yourself and your plan towards covered drugs—this amount can change (in 2016, the cap was $3310), at which point, you enter "coverage gap" (a.k.a. a "donut hole").  You will then have to pay approximately the next $3,000 out-of-pocket. After this threshold is reached, you will obtain comprehensive coverage. Some "premier" plans provide some coverage within the "donut hole."

Paying for Medicare

Under Original Medicare, in addition to the cost for a Medicare supplement policy, Social Security deducts money from your Social Security check as a payment for Part B. When you are first offered Medicare insurance, you are given an option whether or not to take Part B. Some people who are insured on another policy or feel they cannot afford the deduction will consider not accepting Part B. However, it must be considered that there will be a heavy dollar penalty which increases with each month, should the person later want or need Part B. The same is the case with Part D. There is a premium for Part D. If you do not take Part D when it is first offered, again there will be a serious penalty should you want it or need it in the future.

Medicare Advantage

Unlike Original Medicare, which is administered through Medicare (Social Security Administration), Medicare Advantage plans are obtained through major private insurance companies. These plans roll Medicare Parts A, B, and D into one policy which you purchase for a certain amount per month. These are managed care plans of some sort, so you can only see permitted providers. Some of these plans are perferred-provider only (PPO), so the choice is wider, but the cost is more expensive. These plans may have a few more, and sometimes less, services than Original Medicare. You will need to check the policies and compare them carefully with original Medicare. These Advantage Plans also have deductibles and co-payments for most services, including major yearly deductibles for hospitalizations. Therefore, although the monthly premium may be less than a combined Part B, a Medex  policy and the premium for Part D under original Medicare, you may end up paying more after the one premium, co-payments and deductibles. These plans may also include Part D, depending on which plan you buy. The lower the premium the less coverage and vice-versa.

Medicare Advantage Plans make money by contracting with Social Security to pay for a portion your coverage, plus your monthly premium, plus deductibles and co-payments. You should compare costs, benefits, and access to physicians carefully before choosing one of the two Medicare approaches. Many insurance companies provide a variety of plans; again for a lower premium you receive less coverage and vice-versa.

State and Federal Medicaid Insurance for the Disabled

For those on Supplemental Security Income (SSI), Medicaid coverage from the date of acceptance is automatic. Medicaid includes prescription drug coverage. Medicaid is a comprehensive medical insurance program that covers most general hospital and medical procedures. It also covers nursing home care. There are no premiums, although there may be small co-payments (not so small to a cash-strapped patient).

However, health and medical care providers may choose not to participate in Medicaid, and a majority of doctors do not "take" Medicaid patients. Hospitals do take Medicaid. So if you rely on Medicaid, you must find doctors willing to accept the coverage.

If you are on a form of state general assistance, you will also probably be covered by Medicaid.

In many states disabled persons with other income (under a certain dollar amount), not eligible for financial assistance, may be eligible for "Medicaid only."  For instance, in Massachusetts, a disabled individual with income around $1,000 per month can receive Medicaid. For persons receiving more income, there is a deductible.  Residents of Massachusetts may receive benefits under the Massachusetts Comprehensive Health Care Law

Medicare and Massachusetts health insurance benefits under the Affordable Care Act

With the implementation of the federal Affordable Care Act (the federal health care law), it is useful to review and update some of the eligibility requirements for medical benefits under Medicare and, in Massachusetts, for Medicaid and the Health Care Safety Net.

Several of the eligibility cut-offs have been raised, so disabled patients may be newly eligible for health insurance benefits.


The MassHealth/Medicaid program provides coverage for hospital, doctor and prescription drug costs for disabled patients with a low income and minimal assets.

The current MassHealth/Medicaid program is being expanded as part of the federal Affordable Care Act program and the qualifying income limit is being raised. First, most of the different types of MassHealth programs are being eliminated and brought under one program. In 2015 the new monthly income eligibility cut-off for MassHealth will be $1274. There will also be a ceiling on assets.

Medicare Savings Program—QMB

If you are receiving Medicare Part B (or wish to sign-up for it), and if your monthly income is less than $1333 if you are single, or $1790 if you are married and living together, then your Medicare part B premium will be paid for you. (Also, your income can be higher if your spouse works.)

To qualify for this program your resources (such as money in a bank, stocks or bonds) should not total more than $7,160 if you are single, or $10,750 if you are married and living together. (Some states allow you to have more.) Also, your house, car and up to $1,500 per person in burial expenses do not count as resources.

To apply for the Medicare Savings Program contact your State Medicaid Program. To find out how to contact your local Medicaid office, go to www.medicare.gov and select your State in the "Find someone to talk to" box.

Extra help with Medicare prescription drug costs

If your yearly income is less than $17,505 if you are single, or $23,595 if you are married and living together, then you can receive extra help to pay your Medicare prescription drug plan costs. Your income can be higher if you or your spouse works, other people who live with you rely on you for support, or you live in Alaska or Hawaii. (To qualify for this Extra Help you must enroll in, or be enrolled in, a Medicare prescription drug plan.)

Your resources (such as money in the bank, stocks or bonds) should not total more than $13,440 if you are single, or $26,860 if you are married and living together. Certain things you own, like your house, car, life insurance, and up to $1,500 per person in burial expenses do not count as resources.

To get this Extra Help, contact the Social Security Administration. You can visit www.socialsecurity.gov/i1020 to apply online, or call the SSA at 1-800-772-1213. To apply for a prescription drug plan call 1-880-633-4227.

MassHealth Safety Net

MassHealth Safety Net (formerly the Free Care/Low Cost Care Program) is a Massachusetts program that is available for those with limited income who have no medical insurance or only partial insurance, as well as for people with higher incomes who have large medical bills.

The Safety Net coverage only applies to Hospital Bills or to community health clinics associated with Hospitals. If the Hospital has a prescription drug dispensary, then the Safety Net can cover the prescription drug cost.

The Safety Net program has an income eligibility standard, but no asset standard (savings, property, etc.). Those with partial medical insurance come under the Health Safety Net Secondary Program. The Secondary Program includes Medicare recipients. The Safety Net annual income eligibility cut-off is $22,980.

There are some disqualifications for the Safety Net: If a person's income is low enough to qualify for MassHealth, but s/he did not enroll, then the Safety Net is not available; also, if a person had a MassHealth premium, but didn't pay it, then the Safety Net would not be available.

There is also a MassHealth Safety Net Partial for those with annual incomes from $22,980 to $45,960 if there are medical bills amounting to more than 10% of their income.

Medicare and the Affordable Care Act

The Affordable Care Act program functions under the "individual mandate" which requires that people obtain medical insurance. However, a person covered under Medicare is deemed to have "minimally acceptable coverage" and is not affected by the mandate or any penalties. Even those who have only Medicare Part A (Original Medicare) are deemed to have acceptable medical insurance and are not required to obtain additional coverage under the Affordable Care Act.

The Affordable Care Act does not offer Medicare supplement insurance (Medigap/Medex) or Part D (prescription drug) plans.

Other state and federal health insurance programs

Some states have individual health insurance programs for working disabled adults. In Massachusetts such a plan is called CommonHealth. For a small monthly premium and a minimum number of working hours in a month, an individual may purchase a reasonable health insurance plan. Other states may have similar plans.

Free or sliding-scale care is mandated by federal law for hospital costs, including for doctors or health centers attached to hospitals. Depending on your income you may be eligible for free care. If you are over the eligibility amount, your cost may be reduced.

New State Health Care Laws

Some states are beginning to establish forms of universal health insurance or partial insurance. In Massachusetts, the Commonwealth has set up a mandatory universal system of coverage. All residents, unless they are covered by another "acceptable" health insurance policy, are required to participate under a system of penalties embedded in the state tax system, unless the state determines the person cannot "afford" the insurance.

In Massachusetts there are two policies. Commonwealth Care is low or no-cost health insurance for people who qualify. Prescription coverage is included. For those above the income limit, Commonwealth Choice offers many options from brand-name health plans.

Massachusetts residents can get up-to-date information on these programs from the Commonwealth Connector

So, a disabled person with or without Social Security must look at the various options and determine what health insurance coverage is within their means and is best suited to their needs.

Patient Assistance Programs for prescription drugs

Patient Assistance Programs (PAP's) are programs established by drug companies that provide free or low-cost drugs to individuals who are unable to pay for them. These programs may also be called charitable drug programs, indigent drug programs or medication assistance programs. Most prescribed drugs are available through these programs. All of the major drug companies offer patient assistance programs, but each company has its own eligibility requirements and application procedures.

To utilize these programs for your prescriptions, you must first find out which company manufactures each of your prescriptions. You then apply to each company for the specific medication(s) the company manufactures.

You must meet program income eligibility requirements, which may differ somewhat from company to company. Generally, individuals must have an income below 200% of the federal poverty standard, must be a U.S. resident or citizen, and must not have other prescription drug coverage.

There are two websites that provide comprehensive information on which medications are manufactured by each company, as well as how to obtain applications for each company's program. The Partnership for Prescription Assistance at www.pparx.org —phone number: 1-888-477-2669, will allow you to download company applications.

A second program, RxAssist—a Patient Assistance Program Center, www.rxassist.org —phone number: 401-729-3284, also provides comprehensive information and assistance. You must fill out each application carefully, according to instructions. Some companies require that the physician's office obtain the application form by calling the company.

After the form is completed and submitted, the company will decide if you are eligible. If an individual is approved, the medication may be sent directly to the patient, to the doctor's office, or to the patient's pharmacy—depending on the program. Most medications provided are free, but some companies require a small co-payment.

Each company will have a different procedure for refills. These programs are extremely helpful for those who have no other means to pay for their prescriptions.

Delivery of medications

Some pharmacies may have home delivery services. If you are too sick to pick-up your medications, your local taxi company will often pick-up and deliver your medication for a fixed cost.

Primer for Social Security Disability Benefits

What if I have no long-term disability insurance of my own or through an employer?

Very often a disabled individual is working at a job without Long-term Disability (LTD) benefits, or has been out of work and is no longer covered by an LTD policy. Under these circumstances, what benefits are available for financial assistance, medical insurance, and other needed help?

The primary alternative to long-term disability insurance for financial and medical insurance is Social Security Disability Benefits. These benefits are provided through the Federal Social Security Administration.

The Massachusetts CFIDS/ME & FM Association has written a comprehensive booklet, The Massachusetts CFIDS/ME & FM Disability Book: How to Apply for Social Security Disability Benefits If You Have Chronic Fatigue Syndrome (CFS/CFIDS) . The content in the booklet also generally applies if you have fibromyalgia (FM), or even multiple chemical sensitivities (MCS). This article outline some major elements of the Social Security program, but the booklet will provide you with the needed comprehensive information.

What are Social Security Disability Benefits?

There are two Social Security Disability Programs—Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).

Both Social Security programs have the same standard of disability outlined below. However, they differ in their financial eligibility standards and the amount of assistance they each provide.

Financial eligibility standards

Social Security Disability Insurance

A person qualifies for SSDI if they have worked and paid Social Security payroll taxes for a sufficient period of time prior to becoming disabled. Generally, if a person is over 30 they would have had to have worked 20 quarters (5 years, not necessarily consecutive) over the 10 year period prior to becoming disabled. You should check with your Social Security office to see if you have the necessary number of quarters. If you are lacking one or two quarters, check with the Massachusetts CFIDS/ME & FM Association; sometimes there is a way to achieve the necessary number. Our Social Security Disability booklet will give you a full explanation of this category of eligibility.

There are no income or asset requirements for SSDI. You could be getting investment income or other forms of income for which you do not work. Also you can have assets of any amount.

The monthly disability payment will depend on how much average earnings or salary you had when you worked. If you worked part-time you will receive less. The amount may range from a few hundred dollars to over $2000 a month. The average amount is about $1,000-$1200 per month for an average yearly earnings of $20,000-$25,000. Check with your Social Security Office to obtain an estimate of your monthly cash benefits.

Because Social Security Disability payments are often not enough to pay for all living costs, especially housing costs, many disabled persons find it necessary to apply for other forms of assistance, especially housing assistance, if they have no other source of income. These other forms of assistance are discussed in the sections Housing/Other Essential Needs and Disability Resources.  Besides a financial payment, SSDI also provides Medicare medical insurance but there is a waiting period of 2 years from the date of disability. The Social Security medical insurance programs will be discussed in Medical Insurance

Supplemental Security Income

Often people who are chronically-ill and disabled have not worked for many years, or have only worked part-time, or even worked at employment where they did not pay Social Security payroll taxes, so they don't have the "quarters paid in" to qualify for SSDI.

For people who do not have the required work credits and are disabled, SSI may be available. However, SSI is a program that has tough income and asset requirements. There is an income ceiling that a person can have—that is income from all sources. The income amount is the amount of SSI monthly payment, which varies by state. In Massachusetts the amount is somewhere in the area of $600-$700. (Check with your local Social Security office for the exact figure.)

If you have income from any source(s) above this amount you will not be eligible. This includes income from a spouse. And any income you receive from SSI will be deducted from the little other income that you have. However, if you do qualify for SSI, you will get Medicaid, a comprehensive medical insurance plan, immediately. (See Medical Insurance for some details).

You also will probably be eligible for food stamps and fuel assistance. Also there is an asset limit for SSI. You cannot have assets of more than $2,000. You may have a car and a house that you live in. Call Social Security for more details. If your SSDI amount of monthly income is under the SSI payment limit, you will be able to collect from both programs. SSI will supplement your SSDI up to the SSI limit. You apply for SSI in the same way as SSDI.

Required level of disability

The term "disabled" under Social Security regulations means that: a person is unable to do any work, even part-time, sedentary work on a predictable basis, and this condition has lasted or is expected to last at least a year.

This definition is termed "permanently and totally disabled". Under this definition a person is unable to perform any "substantial, gainful activity." (This is a more encompassing standard than many long-term disability policies, which may allow for some level of work.)

The key phrase for many disabled patients is being able to do any work on a "predictable basis".

For example, especially in the case of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or fibromyalgia (FM), a person might be able to work 4 hours today on a computer, and 4 hours tomorrow on the phone, but then be unable to work for 3 days due to a relapse. This person would be considered disabled by Social Security. However, if a person could work 5 hours a day, 3 or 4 days a week on an ongoing, predictable schedule week after week, month after month—then the person would not be considered disabled.

Applying for Social Security Disability

To apply for Social Security Disability benefits, you simply call your Social Security office and state that you are disabled and need to apply. You should ask that an application be sent to you in the mail and should also request a date for a telephone interview. You should fill out the application prior to the telephone interview, so that your answers will be well-considered and clear.

One date of importance is the date you became disabled—that is you stopped being able "to do any work, even part-time sedentary work, on a predictable basis." You may have been out of work for some period of time. Give the earliest date you fit this definition. You will also be asked when you first became ill. Give the date as requested—this may have been many months or years before you became disabled.

When you are interviewed for your application, make sure you communicate just how ill and disabled you normally are. If you have been having a few good days, you may be feeling hopeful and therefore tend to understate the severity of your illness. Most people want to be working and are ambivalent about being "disabled."  As a result, they will express themselves to Social Security as if they are less ill than they actually are. Moreover, some patients go into a job interview mode and "put their best face forward."

If you do not communicate to Social Security just how severely and chronically ill you are, then Social Security cannot know—and therefore has no good reason to grant benefits. If truthful, patients should think first of when they are having a bad day or a bad week in order to balance their presentation.

Social Security may have an application online. If possible it's best to fill out paperwork off-line, since then you can take time to consider and answer questions. A formal telephone interview is best, but if you are asked to be interviewed in person, then you must do so, unless you can persuade Social Security otherwise.

Applying for Social Security Disability can be a daunting and sometimes an extended process. Our Social Security Disability booklet Mass CFIDS/ME & FM Disability Handbook: How to Apply for Social Security Disability Benefits if You Have Chronic Fatigue Syndrome (CFS/CFIDS) will arm you with the knowledge and persistence to navigate the process.

There are normally three stages before a claim is approved, although sometimes a person can be approved at stage one or two. The better and more complete your medical documentation, the higher the chances are for a quicker approval.

But you should not give up if you are disapproved at stage 1 or 2. Ninety percent of people who are approved are approved at stage 3. Most people with ME/CFS or FM who are truly disabled are accepted, although there is variation depending on the region of the country you live in.

The waiting period

The typical waiting period for Social Security approval of an individual's claim may take many months. If a person has little or no savings or assets, he or she may not have sufficient funds to meet their living expenses. Some people may have family or friends from whom to seek help.

There are some assistance programs that may help to bridge the waiting period "gap".

There is a six-month waiting period from the date of disability before one's funds begin to accumulate. Once an application is approved, there is usually a check for retroactive accumulated funds.

However, Social Security has a limit on retroactive funds paid to an older disability date. But there is no waiting period before you apply—you should apply as soon as you are no longer able to work.

Importance of medical documentation of your disability

The key to obtaining either SSDI or SSI is the full medical documentation of your disability by one or more MD physicians.

Your doctor must be willing to support your claim and provide the necessary medical reports, physician's office notes, medical records, etc.

Working while applying for Social Security Disability

Many people who have no other income or resources ask, "How can I meet my expenses while I wait for Social Security? Can't I work just a few hours a week?"

In general, any work during the application period is viewed suspiciously by Social Security as possible "substantial gainful activity". (This phrase means you are not disabled.)

The best advice is not to work at all while applying for Social Security. Any more than 3 hours a week can put your application in some jeopardy. Even the 3 hours may be questioned.

After you've been accepted, the rules change, and you are allowed to work a certain amount without immediately jeopardizing your benefits. (The rules for this system are complex, and if you are granted benefits you must learn them thoroughly before doing any work, so that you will know what can happen to your benefits under various conditions of work/earnings).

If you have to work a few hours a week to make ends meet, you should consult an advocate or attorney who knows about Social Security disability for an opinion about how your work will affect your application.

What programs are available to an individual with few or no resources during the Social Security waiting period?

General Assistance

"General Assistance" is a generic term that has different specific names in different states. In Massachusetts, the assistance program is Emergency Aid to Elderly, Disabled and Children (EAEDC). It is available from the State Department of Transitional Assistance. (In most states it is the Public Welfare Dept.)

Depending on the state, you obtain a form from your doctor stating that you are disabled for a specific number of months. This program is only for people with almost no income or assets.

In Massachusetts, the limit on monthly income is about $300, and this is also the monthly payment. There is also an asset limit, which may or may not include a car. The program includes immediate Medicaid/Mass. Health insurance. You should be eligible for food stamps and fuel assistance.

Unemployment Compensation

Sometimes when a person can no longer work, s/he is laid-off or terminated. Given that Social Security can take months to be approved, the individual may instead seek unemployment benefits. Generally, a person who is laid-off is eligible.

A person who is terminated may be eligible if the termination is not his/her fault, and the employer does not contest the benefits.

A person who resigns is generally not eligible, unless s/he can show the resignation to be compelled. If you have resigned, you should check carefully as to your rights to unemployment compensation.

The issue of whether an ill or sick person can receive unemployment benefits is not a simple one. To be eligible, a person must be willing and able to work—and be seeking work.

Unemployment compensation, under some circumstances, allows a partially ill person to obtain benefits; there is some leeway for limited, partial disability. Perhaps you can work part-time. You may need to check with a disability lawyer.

However, you cannot apply for Social Security disability while receiving unemployment benefits, since your receiving unemployment benefits stipulates that you are able to work, while the criterion for receiving disability requires you to state you are totally unable to work.

Workman's Compensation

A number of patients with ME/CFS, FM, multiple chemical sensitivity (MCS), and toxic exposure apply for Workman's Compensation. To be eligible, you must be able to show that an illness or injury was caused, or probably caused, by your employment. ME/CFS, an immune and neurological disorder, is sometimes caused by extreme work stress or exposure to toxic materials. If you believe that your illness was caused by your job, you should check with a workman's compensation attorney familiar with the type of illness you have. The workman's compensation procedure requires perseverance.

Disability Retirement

Various public employees, both at the state and local level, are not covered under Social Security. The local or state governments have disability retirement systems.

If you are clearly disabled and can't work, you should determine whether you are eligible to take a disability retirement. Most jurisdictions require a certain number of years worked—or to be "vested"—often ten years.

For instance, the only "disability retirement" for those under the GIC Commonwealth of Massachusetts retirement plan is the raising of the "age" of the applicant to 55, if you are under the age of 55. This means retirement benefits (if you are vested) will be computed based on the creditable years worked with the system's percentage multiplier for someone of age 55. If you are age 55 or over, you must take normal retirement.

You will likely need the advice of an attorney to guide you through the disability application process. If you are in a labor union, you might be able to find an attorney familiar with obtaining disability retirement through your union; however, you may have to educate him or her about ME/CFS or FM.

You may want to hire a private attorney who knows about the illness and the retirement system. Usually you will have to obtain very thorough medical documentation to persuade a medical board and/or the retirement board of your condition.

More resources

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

Disability Insurance Claims: General Information

Major 2014 Social Security Ruling Establishes New Standards for Documenting CFS/ME Social Security Disability Claims/Reviews

Obtaining Social Security Disability with CFS 

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

The Reasons for Patients to Join Together in Patient Associations

Hello, fellow sufferers and fellow human beings. We do suffer—some of us more than others. But we are human beings, despite our suffering. When the suffering lessens, we feel more human again, more ourselves, and we are thankful. When our suffering is intense, we hold on knowing that it will usually lessen.

This is what we have in common—unfortunately, our suffering; and fortunately, our humanity. Part of our humanity is our compassion for another patient who is suffering (which comes out of our own experience). And when we have a little energy in ourselves to console and understand another patient, the benefit to that person cannot be underestimated.

A second characteristic we possess is determination. Sometimes the determination is weak, sometime it is stronger. But the determination is to somehow keep going. And then as we become part of the patient movement, even if it's just by keeping in touch with other patients or by being a member of Massachusetts CFIDS/ME & FM Association, our determination is directed not just toward day-to-day survival, but toward, in some small way, doing something about ME/CFS.

As we inform ourselves about ME/CFS, and as we think about what, within our limits, we can do, our effort is to both relieve suffering and. to help find the causes and effective treatments for ME/CFS. Such efforts have to be an effort of many people, not just one person. For one person it's impossible. But with many hands turning the wheel, the wheel will slowly move.

So by joining together, we have worked, and can continue to work, wonders. We need to both do what little we can ourselves—and to then to persuade our society and government to provide the programs to relieve our suffering and to fund genuinely scientific research into the causes and treatment of the illness. Society should have an interest in doing this. Anyone can become ill. So it's like an insurance policy—everybody contributes knowing someday  s/he may need help. So in a way, by calling for and insisting upon help, we are helping our country and the world. (Even if sometimes they don't get it.)

And as you know, in our effort to help each other, Massachusetts CFIDS/ME & FM Association makes it possible for us to join together to accomplish what we could never accomplish alone. Massachusetts CFIDS/ME & FM Association gives us greater power to both help ourselves and to try to persuade the society and government to help both those who are sick with ME/CFS or FM and those who might become sick. Without Massachusetts CFIDS/ME & FM Association  and other organizations that work for patients, we would definitely be worse off.

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.