• FM/CFS/ME Survey Results
• Disability Q&A - United States
• Chronic Fatigue, Stress Hormone Linked
• Exercise & Fibromyalgia
• Autonomic Nervous System & FM
• Independence Day
• Tips on Finding a Good Wheelchair Accessible Hotel/Motel
• Does Graded Exercise Therapy Improve PostExertional Malaise in CFS/ME

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:

• Acupuncture Effectiveness: 39%
• Acupressure Effectiveness: 64%
• Biofeedback Effectiveness: 60%
• Gentle Exercise Effectiveness: 56%
• Heat Therapy Effectiveness: 83%
• Massage Therapy Effectiveness: 67%
• Physical Therapy Effectiveness: 36%
• Swimming/Hydrotherapy Effectiveness: 70%

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.

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.

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).

Chronic fatigue syndrome may be linked to the stress hormone cortisol, at least in women, according to a new study. The study shows that women with chronic fatigue syndrome had lower cortisol levels in the morning, compared with healthy women.

The study included 185 Georgia adults, 75 of whom had chronic fatigue syndrome. Those patients had fatigue lasting at least six months with no known cause and accompanied by at least four other symptoms, such as muscle pain or memory problems.

Participants provided saliva samples taken as soon as they woke up, and again 30 minutes and an hour later. The CDC's William Reeves, MD, and colleagues measured cortisol levels in the saliva samples.

Chronic fatigue syndrome was associated with lower morning cortisol levels among women, but not among men. Morning cortisol levels were similar for men with and without chronic fatigue syndrome.

The study doesn't prove that low morning levels of cortisol cause women's chronic fatigue syndrome. The researchers don't know which came first - low morning cortisol levels or chronic fatigue syndrome - but their findings may be a clue for researchers.

The thought of exercise, movement, activity, or becoming physically fit doesn't need to conjure up images of pain, fear and frustration. When your doctor suggests that you exercise to help improve your fibromyalgia, you don't have to panic. Now you can visualize the feeling of peace and relaxation you get from yoga, the graceful moving meditation you experience while doing T'ai Chi, and the strength and balance you build as you do slow, precise stretching on the Pilate's equipment.

"Exercise" no longer has to be thirty hard and fast minutes on a treadmill. It can be a very personal experience, involving a mind-body connection that helps bring mental, emotional and physical balance, which is essential to overall well-being and health.

Try one of the techniques below to "exercise" your body and mind without killing yourself in the process.

T'ai Chi has been described as "mediation in movement." The basic concept of T'ai Chi is to be grounded in your feet with a relaxed "puppet like" attitude, sporting a straight spine – like a string of pearls. It's described as a, "standing, slow moving dance."

Practicing T'ai Chi today, you are working toward "being in the present," which will lead you "to joy in the movement." As your body follows your breath, your mind stays still and you will feel relaxed and more aware. Through your movement, you are aligning your body in order to enhance the flow of energy. As you "dance" you become aware that your feet are grounded and that your eyes are aware but not focused. When practicing T'ai Chi you are in the now, yet you know everything that is all around you. The movement is not about thinking or trying, rather it is about letting go, letting go of the resistance. Your movements are soft and fluid. As you gently move, the tension falls away and you become a part of the movement of the universe.

It is important to note that everyone can practice T'ai Chi. There are even classes for people who are in wheelchairs or who have limited range of movement. For those with fibromyalgia, T'ai Chi can teach a very valuable lesson. You don't have to "endeavor or struggle" with your illness. Try to envision how soft and fluid water is and yet remember - it is so powerful that it can wear away solid rock and create the beauty that is the Grand Canyon.

The Pilate's method is not just a set of exercises but a complete approach to developing body awareness. It is a conditioning program that focuses on subtle movements to improve muscle control, flexibility, coordination, balance, strength and tone. Its application will strengthen and stretch the body's core muscles. By taking weak abdominal muscles and strengthening them, the body becomes aligned. Since these core muscles support the spine and protect the body's organs, as they become stronger the body as a whole becomes stronger. This result is reached over time as part of a natural evolution rather than other exercise programs that force the results.

By practicing Pilate's a person becomes more aware of their body as an integrated unit. By also practicing proper breathing techniques, as the body becomes more aligned you develop an increased efficiency of movement. The final result is a heightened sense of awareness.

Unlike weight bearing exercises, Pilate's is designed to stretch and strengthen the muscles, open joints and release tension. Thus, the muscles grow longer and leaner. Blood flow is increased and energy begins to stream into specific areas of the body. Those who practice Pilate's feel more energized and find their movements less restricted.

One aspect that differentiates Pilate's from other forms of exercise is that it takes a commitment on the part of both the student and the teacher. Pilate's requires more personal supervision, but it helps to insure that it is safer and more effective. If the teacher and student create a trusting relationship, you both will enjoy what you are doing and it will therefore have remarkable results.

The autonomic nervous system (ANS) is the part of the peripheral nervous system that acts as a control system, maintaining homeostasis in the body. These maintenance activities are primarily performed without conscious control or sensation. The ANS has far reaching effects, including: heart rate, digestion, respiration rate, salivation, perspiration, diameter of the pupils, micturition (the discharge of urine), and sexual arousal. Whereas most of its actions are involuntary, some ANS functions work in tandem with the conscious mind, such as breathing. Its main components are its sensory system, motor system (comprised of the parasympathetic nervous system and sympathetic nervous system), and the enteric nervous system.

Researchers are beginning to wonder if there is a definite link between the autonomic nervous system and FM. Manuel Martinez-Lavin MD studied a group of patients with FM and compared them with healthy controls. By means of portable recorders, he registered the subjects' heartbeat for 24 hours while they followed their routine daily activities. He found that patients with FM have relentless hyperactivity of the sympathetic nervous system. This abnormality was also evident during sleeping hours. In a different study, he subjected patients with FM to a simple stress test (to stand up). He observed a paradoxical derangement of the sympathetic nervous system response to the upright posture. Such findings have been confirmed by other groups of investigators.

The results of these studies suggest that a fundamental alteration of FM is a disordered function of the autonomic nervous system. Patients with FM lose the normal day/night cycles (circadian rhythms) and have a relentless sympathetic hyperactivity throughout 24 hours. This may explain the sleeping problems that the patients have. At the same time, such individuals have sympathetic hypo-reactivity to stress, which could explain the profound fatigue, morning stiffness and other complaints associated to low blood pressure. This autonomic nervous system dysfunction could induce other symptoms of fibromyalgia such as irritable bowel, urinary discomfort, limb numbness, anxiety and dryness of the eyes and mouth.

Fibromyalgia's defining features (chronic widespread pain and tenderness to palpation) could be explained by the mechanism known as "sympathetically maintained pain". After a triggering event (such as physical/emotional trauma, infections) relentless sympathetic hyperactivity may develop in susceptible individuals. This hyperactivity induces excessive norepinephrine secretion, that could in turn sensitize central and peripheral pain receptors and thus induce widespread pain and widespread tenderness.

Useful methods that improve autonomic nervous balance are graded aerobic exercises and mind-body relaxation techniques. Liberal intake of mineral water may help symptoms associated to low blood pressure (fatigue, dizziness, faintness). Avoidance of substances with adrenaline-like effects (nicotine, caffeine containing soft drinks and coffee) is also recommended.

The proposal that FM is a sympathetically maintained neuropathic pain opens new perspectives for its treatment. Diverse anti-neuropathic compounds are in the development period. The intense research that is taking place in different parts of the world will very likely yield more effective treatments in the near future.

Independence Day (commonly known as the Fourth of July) is a federal holiday commemorating America's independence from the Kingdom of Great Britain on July 4, 1776. Americans celebrate Independence Day with fireworks, parades, barbecues and picnics.

Though the Fourth of July is iconic to Americans, some claim the date itself is somewhat arbitrary. New Englanders had been fighting Britain since April 1775. The first motion in the Continental Congress for independence was made on June 4, 1776. After hard debate, the Congress voted unanimously, but secretly, for independence from Great Britain on July 2 and appointed Thomas Jefferson to write a draft. The Congress reworked the draft until a little after eleven o'clock, July 4, when twelve colonies voted for adoption (New York courteously abstained from both votes) and released a copy to the printers signed only by John Hancock, President of the Congress, and Secretary Charles Thomson. Philadelphia celebrated the Declaration with public readings and bonfires on July 8. Not until July 2 would a fair printing be signed by the members of the Congress, but even that was kept secret to protect the members from possible British reprisals.

Finding a good wheelchair accessible hotel can be a daunting task. With so many places to choose from disabled travelers need a quick way to compare hotels and find the one that can accommodate their special needs. Following the few simple trip planning steps below can make the difference between a great vacation or a frustrating trip for a disabled person.

Narrow Your List of Hotels/Motels

While wheelchair accessibility is the top priority for a disabled traveler, many travel agents and travel reservation sites forget that a person with a disability has other needs too. In addition to good wheelchair access disabled travelers are also interested in things such as a swimming pool, restaurants in the hotel, pet accommodation, and internet access.

WhenWeTravel is a web site offering a Wheelchair Accessible Hotel Search to help disabled people narrow the list of hotels to the ones with all their special needs. Travelers can use it to pick a destination and check off all the amenities they require. They currently have a list of over 37,000 wheelchair accessible hotels from destinations all around the world. A disabled traveler can use the hotel search to get a narrow list of hotels to be used for calling the hotel directly.

Call The Hotel or Motel Directly and Ask Questions

By asking a few questions a disabled traveler can quickly determine if the hotel is disability friendly. Here are a few suggested questions:

• Make this the FIRST QUESTION asked: Does the hotel provide any special disability services? Let the hotel staff explain what they have to offer. Their response will immediately indicate their experience and desire in assisting disabled travelers.
• What floor are the wheelchair accessible rooms on? It is important to be near the first floor in case of an emergency where the elevators are not in service.
• Are the rooms ADA ( ADA Accessibility Guidelines for Buildings and Facilities) compliant?
• Can the beds and other furniture be moved in order to make the room more comfortable and accessible?
• Does the hotel provide a wheelchair accessible shuttle to nearby tourist attractions and public transportation?
• Is disabled or handicap parking available for your car or van?

Listen "between the lines"

A disabled traveler should be listening for clues that indicate the hotel has a good understanding of the difficulties faced by an individual with a disability. If the reservation desk at the hotel is knowledgeable about ADA requirements such as wheel chair accessible passages, counter heights, door hardware, bathroom fixtures, and roll in showers there is a good chance they frequently serve disabled guests. However, be wary of a hotel manger that seems to promise too much. If the hotel seems too good to be true... it probably is.

Graded exercise means you slowly increase the amount of your physical activity. In a 2002 study, 35% of patients who engaged in graded aerobic exercise reported feeling much better or very much better after 3 months. Only 18% of patients who performed relaxation and flexibility exercises reported the same results. At the end of a year, more than half of the exercise group no longer had symptoms of CFS/ME, compared to only 34% of the relaxation group.

In general, graded exercise involves:

• Walking, swimming, and using equipment such as treadmills or stationary bikes are excellent choices for starting an exercise program. Swimming and water therapy are also good because they eliminate putting weight on joints.
• A very gradual program of activity, beginning with mild exercise and building in intensity over time, is important to help patients do their exercise as directed. For example, in one successful exercise study, patients started with 2 weekly sessions that lasted for only 6 minutes each. By week 12, they were performing exercises that lasted 25 minutes each, with enough intensity to produce some sweating. However, they were still able to talk comfortably.
• Patients should do stretching exercises before exercising. A daily stretching routine can also help relax tense muscles and prevent muscle soreness.

There have been arguments about the benefit of exercise in treating the fatigue, but now, say some, the answer is clear: Exercise does work but you've got to be careful. For example, in the Medical Journal of Australia, Prof. Andrew Lloyd has announced that "one can safely conclude....that graded physical exercise should become a cornerstone of the management for patients with CFS/ME", unless they are severely ill.

In the same editorial the problem of postexertional malaise is acknowledged: "the cardinal phenomenon of fatigue in CFS/ME is characterized by a marked and prolonged exacerbation of symptoms following minor physical activity". As CFS/ME people with this problem know, this exacerbation is often delayed and brings into play many symptoms. This should be enough to indicate that there is something extraordinary, rather than just exacerbated fatigue happening here. It can be serious enough to stop sufferers from entering exercise experiments or to cause dropping out of them.

We hope you've enjoyed the FM/CFS/ME RESOURCES newsletter. It's easy to Subscribe to our newsletter.

We are constantly adding to and reviewing the information on FM/CFS/ME RESOURCES. We need your help in making the site even better. Complete Our Visitor Survey and help us learn what we are doing well, where the site may be confusing, and what new information you would like to see. It only takes a few minutes to complete the ten survey questions.

NOTE: We do not collect private information and you will not be contacted after you submit the survey.