• FM/CFS/ME Survey Results
• Coping Tips- Shopping
• Disability Q&A - United States
• FAQ's About Disability Attorneys
• Tips For Finding A Doctor
• What is Pediatric CFS/ME?
• FDA Investigates New Drug for Fibromyalgia
• Starting Your Own Support Group

In an effort to find the cause, and hopefully the cure, FM/CFS/ME RESOURCES is conducting an in-depth survey for people with FM and/or CFS/ME. Here are a few of the survey results we've compiled:

• Antidepressant Effectiveness: 69%
• Anti-Anxiety Medications Effectiveness: 83%
• Guaifenesin Effectiveness: 40%
• Muscle Relaxants Effectiveness: 71%
• OTC (over the counter) Medications Effectiveness: 75%
• Pain Medicines Effectiveness: 76%
• Sleep Medications Effectiveness: 81%

Review all the survey results here. If you have yet to take the survey it's never too late. Take the FM/CFS/ME RESOURCES Survey.

For people in wheelchairs or for those who use walkers, shopping brings on a whole new set of problems. Department stores jam clothing racks so close together it's impossible to get near the clothes. And grocery stores never seem to have the items you need within your reach.

One simple approach to solving the shopping problem is to shop online. Many fine stores are now online and offer next day shipping if you're in a hurry. I buy most of my clothing this way as it's impossible for me to get around in department stores. My favorite stores are Lane Bryant, Blair, and Wal-Mart.

To simplify your grocery dilemma, many grocery stores now have delivery service. Check your local grocery stores to see if they offer this service. Having your groceries delivered saves you a lot of time and energy. If they don't offer this service, take someone with you. They'll be able to reach the items you can't, and help to carry your bags.

Another idea for grocery shopping is to use a motorized cart. Even if you aren't in a wheelchair normally, taking advantage of this option can save you pain and agony later. If you decide not to use a motorized cart, be sure to take breaks. Many grocery stores now have a luncheon area where you can sit down and have coffee and a snack. This will give you a chance to rest until you get your strength back.

Remember, if you're too tired when you get home to put away your groceries, just put away the perishables. (meats and refrigerated items) You can always and leave the rest of the items until you've regained your strength. Unless you have a great husband or kids, trust me, they'll still be there!

The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities. While these two programs are different in many ways, both are administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under either program. Below are a couple of FAQ's and their answers. To read more FAQ's about Social Security Disability ClICK HERE.

Do I Have To Pay Income Tax On My Social Security Disability Benefits?

ANSWER: Some people who get Social Security will have to pay taxes on their benefits. Less than one-third of our current beneficiaries pay taxes on their benefits.

You will have to pay taxes on your benefits if you file a federal tax return as an "individual" and your total income is more than $25,000. If you file a joint return, you will have to pay taxes if you and your spouse have a total income that is more than $32,000.

For more information call the Internal Revenue Service's toll-free number, 1-800-829-3676. People who are deaf or hard of hearing may call the IRS toll-free TTY number, 1-800-829-4059. You can also access these publications on the IRS Web site at: http://www.irs.gov.

How Much Can I Earn And Still Receive Disability Benefits?

ANSWER: Yes. The Social Security Administration (SSA) has special rules called "work incentives" that help you keep your cash benefits and Medicare while you test your ability to work. For example, there is a trial work period during which you can receive full benefits regardless of how much you earn, as long as you report your work activity and continue to have a disabling impairment.

The trial work period continues until you accumulate nine months (not necessarily consecutive) in which you perform what they call "services" within a rolling 60-month period. The SSA considers your work to be "services" if you earn more than $640 a month in 2007. For 2006, this amount was $620. After the trial work period ends, your benefits will stop for months your earnings are at a level the SSA considers "substantial," currently $900 in 2007. For 2006, this amount was $860. Different amounts apply to people who are disabled because of blindness.

For an additional 36 months after completing the trial work period, the SSA can start your benefits again if your earnings fall below the "substantial" level and you continue to have a disabling impairment. For more information about work incentives, we recommend that you read the leaflet, Working While Disabled-How We Can Help (SSA Publication Number 05-10095).

If you've got FM and/or CFS/ME chances are you're going to think about applying for Social Security Disability at some point in time. Applying for disability is a long, often frustrating experience. However, having a lawyer who specializes in Social Security, disability law or FM/CFS/ME will make this process much easier! Here are some frequently asked questions and answers about disability attorneys:

Do I Need A Disability Attorney?

A: The Social Security Administration (SSA) doesn't require you to have an attorney, you can represent yourself. Professional representation is a valuable service. The disability determination process is complex. Claimants without professional representation appear to be far less likely to receive the benefits to which they are entitled. For example, in 2000, 64% of claimants represented by an attorney were awarded benefits at the hearing level. However, only 40% of those without representation were awarded benefits at the hearing level.

Do I Have to Pay The Attorney's Fee?

A: You're probably wondering, "How can I afford an attorney when I am not working?" The answer is simple, you only pay the attorney a fee if you win your case. You do not pay an attorney up front. Generally, every disability attorney will represent you on a contingency fee basis. This means you do not pay an attorney's fee unless you win your case. Thus, everyone seeking disability benefits can afford an attorney. The question you should be asking yourself is "can I afford not to be represented by an attorney?"

Are Attorney Fees Regulated?

A: The SSA and federal law set the attorney's fees in disability cases. The standard fee agreement most attorneys use states the attorney's fee is contingent upon winning your case. The fee is 25% of all past due benefits for you and your family, up to a maximum of $5,300, or whichever is less. Some attorneys may use a fee agreement which provides for a maximum fee of $7,000.

The attorney's fees are usually only a fraction of the benefits you receive; depending on the amount of your past due benefits, it can be a very small fraction.

What Is My Case Worth If I Win?

A: The SSA and federal law set the attorney's fees in disability cases. The standard fee agreement most attorneys use states the attorney's fee is contingent upon winning your case. The fee is 25% of all past due benefits for you and your family, up to a maximum of $5,300, or whichever is less. Some attorneys may use a fee agreement which provides for a maximum fee of $7,000.

The attorney's fees are usually only a fraction of the benefits you receive; depending on the amount of your past due benefits, it can be a very small fraction.

Does Hiring A Disability Attorney Increase My Odds of Winning?

A: There are many reasons hiring an attorney can significantly increase the odds of winning your case. One significant reason is that disability attorneys understand the complicated laws and regulations that determine success or failure.

They know what you need to prove in order to win your case, and they know how to go about proving it. Hiring an attorney who specializes in Social Security disability law is extremely important because they have the expertise in representing people with your type of diagnosis. It is also important that your attorney believes in your case and that they can win it. I suggest you ask the attorney how much experience they have with your type of diagnosis and how often do they win? Any disability attorney should be willing to provide you with this information.

How Soon Should I Hire An Attorney?

ANSWER: From the beginning, the attorney should set forth a strategy that you both of you should follow to win your case. It is critical to understand what is necessary to prove your case and how you will go about winning it. The sooner you know this, the sooner you can take steps to execute the strategy and thereby increase your odds of winning. Thus, you should consult with and hire an attorney either when you file youclaim or as soon thereafter as possible.

I encourage you to consult with an attorney as soon as possible to help you understand the process. The consultation should not cost you anything except your time. By understanding the process and having a strategy, you will significantly increase your odds of winning your case.

Is There A Right Way To Fill Out The SSA Forms?

ANSWER: Judges don't usually approve your case based on what you say on the forms. However, they often use what is said in the forms to support a denial of your claim. This is because if the SSA or a judge is going to approve your claim, they will base it on more compelling objective evidence such as medical records and/or treating physicians' opinions regarding your inability to work.

Here are a few tips when completing the SSA's forms that should significantly reduce the likelihood of making a serious mistake that comes back to bite you in the you-know-what!

• Limit your answers to the space that has been provided and do not write in the margins or attach additional sheets of paper.


• Answer all questions as if you're having a bad day. Simply put, if you were back working on a sustained basis, most likely every day would be a bad day.


• You should mention all the diagnoses that have even a small impact on your inability to work. Use 5% of the allotted space to reference diagnoses and 95% to discuss the frequency, severity and duration of your symptoms and limitations. Explain how they limit not only your ability to work but also your ability to function on a daily basis.


• Although the primary reason you are unable to work may be due to a physical diagnosis, don't overlook the psychological issues that often arise after years of dealing with chronic pain and fatigue. You want to win your case anyway you can, whether it is due to physical or psychological problems, or quite frequently, a combination of both.


• Before you became ill you were probably an organized perfectionist who was incredibly productive. Everything in your life had its place; I know it kills you it is not that way now. However, this is not the time to be a compulsive, organized perfectionist!

One of the hallmarks of your inability to work is your concentration problems, memory impairment and brain fog. Your life is now an unorganized mess. The SSA needs to see the real you and not a top notch administrative assistant who is articulate and possesses phenomenal organizational and typing skills. Do not typewrite your answers. Always handwrite them even if your answers become illegible. The clarity of your handwriting and the way you answer the questions tells a lot about the severity of your concentration and memory problems.

I remember it took me several days to complete my SSA forms. Your goal should be to have your answers look like it took you days. In fact, if it did take you days, make sure you tell the SSA that somewhere on the form.

Finding a good doctor is often one of the hardest things you'll ever do. Some doctors still adhere to the theory that FM and/or CFS/ME is "all in your head." However, there are many other doctors who realize that the pain and fatigue we experience is very real indeed!

We've recently expanded our doctor database to include 5862 doctors from 80 countries around the world. This should make it easier for you to find a doctor nearby. Once you've found a doctor we suggest that you call their office and "interview" them first. Calling the doctor will help to determine if they are the right doctor for you. Write down all the things that are important to you, then call. Be sure to have a note pad nearby to jot down their answers, etc.

• I have (or may have) FM and/or CFS/ME, and I'm looking for a health care provider. Is this doctor familiar with FM and/or CFS/ME?
• Does this doctor diagnose FM and/or CFS/ME regularly?
• What percentage of his patients have FM and/or CFS/ME?
• Does this doctor accept what medicare pays?
• What insurance does the doctor accept?
• Does this doctor treat people without insurance, and how much will it cost, etc.

NOTE: While many doctors will accept what medicare pays for their services, there are many who don't. Be sure to know this in advance, as you may need to come up with more money for your visit.

• When calling, is the receptionist friendly, prompt, and professional?
• Were you left on hold for too long?
• Did the receptionist seem knowledgeable about the workings of the office?
• Was the staff friendly and willing to answer your questions?

You've completed the phone interview and you feel this doctor might be the right one. Be prepared for your visit with a list of your symptoms and medications. Many patients find that keeping a symptom diary helps them talk to their doctors better. Ask questions and answer questions fully. Write things down. You might even want to ask permission to audiotape the visit. If possible, always take a family member or friend with you. Here are some things to take into consideration when you go for your first visit.

• When arriving for your appointment, were you greeted promptly?
• Was the reception area clean and comfortable?
• Did you have to wait long to see the doctor?

• When the doctor entered the exam room, did he introduce himself with a smile?
• Did his conversation with you seem as though he looked at your file before greeting you?
• Did the doctor seem caring and compassionate, and sympathetic to your condition?
• Did the doctor rush through the exam?
• Did you feel comfortable talking with him and telling him personal information?

• Did the doctor talk to you about your concerns and ask you if you have questions?
• Did he seem knowledgeable about your illness, tests, current treatment options and medications?
• Did he ask you if you were currently taking any medications?
• Did he discuss any of his philosophies about treatment?
• When discussing pain management, what were his philosophies?
• Are you confident that the doctor will manage your pain to your expectations?
• Who fills in for him when he's on vacation or unavailable?

• What hospital is he associated with?
• What is the reputation of that hospital?
• Is the doctor's office and the associated hospital close to your home?

Most importantly, ask questions when you are unsure about something. Don't be shy or feel you are being "a pain" when you ask a lot of questions. It is your doctor's responsibility to answer ALL of your questions. If he brushes you off or seems inpatient with you, find another doctor! Remember, doctors are people too. Like the rest of us, they have personal opinions and attitudes. They can't be totally unbiased or free of pre-judgments. If your doctor can't deal with your real medical problems, seek help elsewhere.

Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is widely recognized in adults. But it is not as well known that children and adolescents can have the illness. Recognition of CFS in young people can be difficult because they are physically, emotionally and socially different from adults. For example, rather than saying their child is "fatigued," parents may say that he/she is always sleepy, grumpy or cannot keep up with other children in school or at play. Failure to make a proper diagnosis of pediatric CFS may lead to isolation, insecurity, sense of failure and family stress.

"Studies have established the validity of pediatric CFS and that it's neither a psychiatric problem nor a benign illness, as earlier suggested," says David Bell, MD, (who treats children from across the United States and Canada.) "Despite these findings, there is still tremendous misunderstanding in the medical community."

Peter Rowe, MD, a researcher at Johns Hopkins University, agrees that we know too little about CFS in children: "There have been only a handful of published pediatric research studies on CFS, largely due to the lack of adequate funding opportunities for researchers in the field. "The majority of children, particularly adolescents, have an acute onset of symptoms that marks the beginning of CFS. An acute onset is characterized by the sudden appearance of symptoms within a few days to weeks, usually with a flu-like or mononucleosis-like illness in a child who had previously been healthy.

Children who experience an acute onset can clearly describe their symptoms, such as the degree of fatigue or impairment in cognitive abilities, in comparison to their pre-illness state. These children may accumulate a bewildering array of diagnoses from their pediatricians, including childhood migraine syndrome, Crohn's disease, atypical epilepsy, school phobia, attention deficit disorder, rheumatoid arthritis, chronic rheumatic fever, irritable bowel syndrome and others.

The gradual presentation of CFS is slightly different and seems to occur more often in younger (pre-adolescent) children. It is defined by the appearance of symptoms over several months or longer, or by mild symptoms suggestive of CFS (frequent sore throats, headaches or joint pains, relative inactivity, sleeping more than other children of the same age) prior to an acute episode.

It is often difficult for children who experience a gradual onset to describe their degree of fatigue or cognitive difficulties because they don't recall a time period without them. Interestingly, these children may not perceive themselves as being ill, most likely because they have been growing up with their symptoms and have no clear reference to normal health.

Pipex Pharmaceuticals, Inc. a specialty pharmaceutical company developing innovative late-stage drug candidates for the treatment of neurological and fibrotic diseases, announced that the United States FDA has accepted a Pipex-supported, investigator-initiated, Investigational New Drug Application to conduct a double-blind, randomized, placebo-controlled Phase II clinical trial of oral flupirtine for the treatment of Fibromyalgia (FM). The market for FM treatments is expected to grow to several billion dollars annually in the coming years.

Oral flupirtine has been approved as a treatment of pain in Europe since 1981 but has never been approval for any indication in the U.S. Flupirtine, a non-opiate analgesic, has been used in Europe for more than 25 years for post-surgical pain, cancer pain, trauma pain, pain associated with liver disease, and other nocioceptive pain states. Pre clinical data and clinical experience suggests that flupirtine should also be effective for neuropathic pain since it acts in the central nervous system. Flupirtine is especially attractive because it operates through non-opiate pain pathways, exhibits no known abuse potential, and lacks withdrawal effects. In addition, no tolerance to its antinocioceptive effects has been observed. One common link between neuroprotection, nocioception, and flupirtine may be the NMDA (N-methyl-D-aspartate) glutamate system, a major receptor subtype for the excitotoxic neurotransmitter, glutamate. Flupirtine has strong inhibitory actions on NMDA-mediated neurotransmission.

Dr. Andrew L. Stoll, director of the Psychopharmacology Research Laboratory at McLean Hospital, a Harvard University affiliated teaching hospital and inventor of this program, commented, "Due to its rapid onset of action and high response rate in treatment-refractory FM patients, I believe flupirtine may represent a new therapeutic modality for the treatment of this debilitating disease which affects more than six million Americans. There is a strong scientific rationale supporting the development of flupirtine for the treatment of FM."

"For example, other NMDA receptor antagonists, such as ketamine, have also demonstrated efficacy in FM, but have an unacceptable side-effect profile," Dr. Stoll continued, "Based on the extensive database of prior human experience with flupirtine for general pain conditions, coupled with my own experience in treating refractory FM patients on an individual patient basis, I believe flupirtine may be an exciting and highly promising treatment option to this devastating disease."

Steve H. Kanzer, Pipex's Chairman and Chief Executive Officer, stated, "Oral flupirtine has been marketed for more than two decades in Europe for the treatment of pain-related diseases. As we enter this Phase II clinical trial of oral flupirtine for treatment of FM, the product's substantial human experience coupled with the promising human data already generated in refractory FM patients, represents an exciting new approach to treating this widespread often debilitating disease."

Mr. Kanzer went on to say, "The rapid onset of action and mechanism of action may make oral flupirtine an attractive treatment option in the rapidly growing projected multibillion dollar FM market."

During November 2005, Pipex entered into an exclusive worldwide license to issued U.S. patent 6,610,324 and pending international patents from McLean Hospital, a Harvard University affiliated teaching hospital relating to flupirtine's use to treat FM syndrome.

This phase II clinical trial is designed as a double-blind, placebo controlled phase II clinical trial which would evaluate safety and efficacy of oral flupirtine vs. placebo in FM patients. This phase II clinical trial is intended to enroll up to 90 subjects and treat subjects for up to 90 days and the primary endpoint will be a reduction in musculoskeletal pain and the overall symptoms of FM. Secondary outcomes of the study will be a reduction in the severity of mood, fatigue, cognitive symptoms, and sleep disturbance, as well as improve the overall level of functioning.

The major objective of a support group is to provide a warm and caring environment, where the illness is not questioned and where the members feel they are accepted. Knowing that others share this journey offers comfort and reassurance. People with FM/CFS/ME often feel alone with their disease and with the everyday struggles this illness brings to their lives.

We've included the following information to assist you in starting your own support group. Contact us if you have any questions or comments.

Where To Meet

• The first step is to locate rent-free meeting space. Many hospitals, libraries, churches and community and senior centers allow groups to use their facilities at no charge. For small groups, you might want to use members homes.

When To Meet

• Carefully consider the time you choose to hold a meeting. Many FM/CFS/ME patients function better at different times of the day. Some people still work while others require working family members or friends to transport them to the meeting. You might want to consider having daytime and evening meetings.


• Meetings should have a set length. Meetings should be long enough to address the issues at hand, but not so long that it is difficult to sit through. Many FM/CFS/ME patients can not sit for prolonged periods of time.


• Most groups meet once a month, but depending on the needs of their group members, some meet more often (i.e. bi-weekly or weekly).

Program Structure

• Many groups choose a meeting format that alternates between discussion sessions and speaker sessions, thereby providing time for both sharing and educating. Some groups focus on a specific issue such as the education of health care providers or the general public. The focus may change as the group evolves so it's important to continually evaluate the needs of the group as a whole.


• Search for volunteers to be your co-leaders. Check with local schools, friends, relatives, hospitals to start with a small core group of people that will work with you in setting up and leading your support group.


• Meet with your co-leaders on the specifics of the group. Determine what supplies you'll need to get started, what your goals are, the frequency of meetings and a budget. Delegate responsibilities for each person. What do you want to accomplish at each meeting? Who will be responsible for what? Will you have refreshments? Can child care be provided, these are all questions you'll need to resolve before you begin having meetings.

Meeting Etiquette

• Announce basic meeting guidelines at the beginning of each session as a reminder to regular attendees and new participants.


• Never allow one person to monopolize the time. Meetings should provide an opportunity to share feelings and frustrations for all members.


• Observe time limits. Start on time and end on time so that members feel you are reliable and if they should have babysitters, they will be able to work with them easier.


• Be up front if no child care is available, let members know ahead of time if children are welcome and if not, don't start making exceptions.


• Be prepared to have you or your co-leaders do most of the speaking at the first few meetings until your members begin to feel comfortable with each other.


• Place chairs in a circle and close enough that all members can hear.


• Remember that it is normal for things to move slowly in the first stages of your group's formation. It is important not to go too fast. Let people get to know each other, enjoy each other and build trust within the group.


• Give your support group at least 2 months to get going. In the beginning members may come and go but if you keep at it, you will eventually have a small core group that is always there.


• At the beginning of each meeting, have handouts with the goals for that night, contact names and phone numbers and reminders of when the next meeting will be held. That way all visitors will have a written reminder. Have some informational handouts for members to read also. Newly diagnosed members will have many unanswered questions.


• Step up a support system and network for your members in between meetings. Hand out lists of phone numbers and email addresses. Encourage your members to talk with each other in between meetings.


• Because many FM/CFS/ME patients are chemically sensitive, hold fragrance-free, smoke-free meetings for your members.


• Keep injecting fresh ideas, new guest speakers and have a written plan for each meeting to keep everyone on track. Keep it lively, interesting and fun so the members look forward to getting together.

These ideas will help you to get started. For more information click on the links below.

• Getting The Word Out
• Meeting Expenses/Dues
• Sign-Up Sheets
• Volunteers
• Information Packets
• Educational Materials

• Start A Phone Help Line
• Heath Care Directory
• Create A Lending Library
• Publish A Newsletter
• Join In Awareness Day

 

• Group 12 Steps
• Sharing The Load
• Guest Speakers

 
 
 

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