Janelle Meraz Hooper is an award-winning independent author with five books published in the novel, romance, and short story genres. She is from Oklahoma but now lives in Washington State. Her website is: www.JanelleMerazHooper.com. You can also read her short stories, essays, and other writings at The Blue Rose Bouquet. She loves to hear from her readers and can be reached at: JanelleMHooper@comcast.net.

Chronic-Illness.org invites you to read about Janelle Meraz Hooper’s systemic lupus and arthritis experience:

Sickly

by Janelle Meraz Hooper

Every time one of my relatives commented to my mother that I looked sickly, she’d chase me on the sunny patio to get some sun. The more sun I got, the sicker I got. I had systemic lupus.

Nobody in my family even knew what lupus was in those days. From about twelve-years of age until the present I’ve had systemic lupus and other auto-immune conditions.

It crept up on me slowly like tree roots in a water line, doing it’s damage mostly unseen. Even when the damage to my body was visible, for years no one identified the problem. I was just weak. Thin. Lethargic. Sickly.

I can remember my dance director when I was in high school taking me aside and explaining she’d have to take me out of the main dance routines because I wasn’t developing enough muscle tissue to sustain the rigorous choreography.  She knew I loved dancing so she gave me my own position on the stage. I became the clown dancer, dancing through and around the other dancers, bringing laughs from the audience.

Dance became very tiring for me so I moved on to my next love, theatre. That was okay for a while, except that arthritis hit my voice and I became unable to project.

Undaunted, I moved onto radio and television. They had microphones. My voice was no longer a problem.

We moved away from where the radio and television station was, so I returned briefly — off and on — to theatre. By then, my voice was better. The arthritis had moved on to other places in my body.

Then I became more crippled, unable to move across a stage with confidence. I took up stained glass. By then, arthritis had weakened my hands. I abandoned stained glass and went to art school to study watercolor. By now, I was over forty and arthritis was in my knees and feet. In art school, we sat up on high stools to reach our art tables. I got kicked out of art school because they were worried about my being so physically unstable.

By then, I was so disabled that the doctors asked me to take some tests to look for clues for things I could do to support myself. I must have taken every test they had, physical and mental. The result: I was most suited to write or work for the state department at an embassy. An embassy? In my hometown of Puyallup? We barely had a Chinese restaurant.

A few days after I got the test results, I got a phone call offering me a job as a staff writer at a local magazine.

From there, I moved onto writing novels.

I call this my last frontier. If I ever become unable to write, there are few other things I’m capable of doing and I’m interested in none of them.

But I guess I could pick something else if I had to.

I could go into politics, I guess.

Or become a bag lady.

Or move to New Orleans and sell violets on a street corner.

I kind of like that last idea. I could set up my cart outside a bar with lots of music…

###

Reminder: You can find links to Janelle Meraz Hooper’s books and other writings at www.JanelleMerazHooper.com and The Blue Rose Bouquet.

My systemic lupus and arthritis story: Sickly by Janelle Meraz Hooper is a post from: Chronic Illness.org

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Articles & Resources on Postural Tachycardia Syndrome (POTS)

National Dysautonomia Research Foundation

Dysautonomia is a dysfunction of the autonomic nervous system, and includes Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope, Mitral Valve Prolapse Dysautonomia, and other disorders. The National Dysautonomia Research Foundation (NDRF) provides physician, treatment, a research database, a patient handbook, videos, and other materials.

Vanderbilt University Medical Center Orthostatic Intolerance Page

Vanderbilt University Medical Center information on Orthostatic Intolerance and Postural Tachycardia Syndrome (POTS).

CFIDS Association of America Article on Orthostatic Intolerance

The printable version of an article on the The CFIDS Association of America. Inc. site on Orthostatic Intolerance. Includes information on treatment options.

Autonomic Nervous System Dysfunction in Adolescents with POTS & CFS

The complete text of an article by Julian M. Stewart, M.D., Ph.D on “Autonomic Nervous System Dysfunction in Adolescents with Postural Orthostatic Tachycardia Syndrome and Chronic Fatigue Syndrome Is Characterized by Attenuated Vagal Baroreflex and Potentiated Sympathetic Vasomotion.”

POTS Clinical Trials – National Institutes of Health Information Page

Information page maintained by the National Institutes of Health on POTS Clinical Trials.

NDRF Listing of Physicians and Facilities that Treat POTS

A listing of physicians and medical facilities that have notified the National Dysautonomia Research Foundation of their knowledge and specialty in the diagnosis and medical treatment of Dysautonomia and Postural Tachycardia Syndrome (POTS).

Timothy C. Hain, MD on Orthostatic Intolerance in CFS, POTS

An article by Timothy C. Hain, MD, Northwestern University Medical School, Chicago in which he states that something as simple as elevating the bed 4-6″ can increase a POTS patient’s blood volume, and can be helpful after only a few days. Treatment options and medical tests discussed.

NINDS Postural Tachycardia Syndrome Information Page

The National Institute of Neurological Disorders and Stroke site’s information about Postural Tachycardia Syndrome (POTS)

New York Medical College Center For Hypotension POTS Page

The New York Medical College Center For Hypotension page on Postural Tachycardia Syndrome (POTS) information, maintained by Julian M. Stewart M.D., Ph.D.

Abnormal impedance cardiography predicts symptom severity in CFS

The abstract and link to the full text about a study done by the Myalgic Encephalomyelitis Society of America on circulation problems in those with Chronic Fatigue Syndrome.

The Neuropathic Postural Tachycardia Syndrome

Abstract of a study done by Giris Jacob, M.D., D.Sc., Fernando Costa, M.D., John R. Shannon, M.D., Rose Marie Robertson, M.D., Mark Wathen, M.D., Michael Stein, M.D., Italo Biaggioni, M.D., Andy Ertl, Ph.D., Bonnie Black, R.N., and David Robertson, M.D. on postural tachycardia syndrome, with links to additonal information from Vanderbilt University and other sources.

POTS Place: A Guide to Postural Tachycardia Syndrome

POTS Place: A Guide to Postural Tachycardia Syndrome is a site maintained by The Dysautonomia Information Network.

Peter C. Rowe, MD Revised Guidelines for CFS and POTS

Revised guidelines for CFS and POTS from Peter C. Rowe, MD, Professor of Pediatrics, Johns Hopkins.

Local Vascular Responses Affecting Blood Flow in POTS

Abstract and link to full text of a New York Medical College study on Local Vascular Responses Affecting Blood Flow in Postural Tachycardia Syndrome.

Regional blood volume and peripheral blood flow in POTS

Abstract and link the text of the entire article on a study by New York Medical College on “Regional blood volume and peripheral blood flow in postural tachycardia syndrome.”

POTS Articles in HighBeam Research Archives

Below the Google ads is Information on POTS articles from the HighBeam™ Research newspaper and magazine archive, which contains articles from hundreds of publications, including: Modern Medicine, Aging, The Ardell Wellness Report, HealthFacts, Medical Post, Medical Update, Men’s Health and the National Women’s Health Report.

MEDLINE/PubMed Database of POTS Research Articles

MEDLINE/PubMed Database of indexed full text articles from Life Sciences Journals on Postural Tachycardia Syndrome (POTS).

What Helps? … from POTS Place

POTS Place information on treatments, medications, and lifestyle adaptations that help those with POTS.

Edema and Venous Pooling

Information on different conditions (including POTS) that can cause fluid and plasma to collect within a limb instead of processing through the cardiovascular system, which is referred to as edema.

Neuropathic Postural Tachycardia Syndrome – NEJM

The abstract and full text links to The New England Journal of Medicine study on Neuropathic Postural Tachycardia Syndrome — “a common disorder that is characterized by chronic orthostatic symptoms and a dramatic increase in heart rate on standing, but that does not involve orthostatic hypotension.”

Cerebral & Systemic Hemodynamics Changes During Upright Tilt in CFS

Full text of a Journal of Neuroimaging article on Cerebral and Systemic Hemodynamics Changes During Upright Tilt in CFS.

Autoantibodies to Ganglionic Acetylcholine Receptors in Autoimmune….

Abstract of a study on Autoantibodies to Ganglionic Acetylcholine Receptors in Autoimmune Autonomic Neuropathies which is cited in a number of other related linked articles and studies.

American Academy of Family Physicians on Orthostatic Hypotension

While POTS is associated with an increase in the heart rate when the patient stands, orthostatic hypotension is a condition that causes a decrease in the heart rate when standing. This page is the American Academy of Family Physicians article on Evaluation and Treatment of Orthostatic Hypotension.

The Doctor’s Lounge Information on Postural Tachycardia Syndrome

The Doctor’s Lounge information on Postural Tachycardia Syndrome (POTS).

National Heart, Lung, and Blood Institute

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Excerpt from:

10 Natural Remedies That Can Save Your Life
by James F. Balch (Doubleday, April 1999)

GARLIC :

No one is neutral about garlic, just as no one is neutral about skunks. Some people love the look of a skunk’s soft, furry body, its quizzical face, its seemingly gentle demeanor. Others bluntly say that a skunk stinks, and they want nothing to do with it.

And then there’s garlic. Some cuisines seem to start with garlic, the other ingredients, like tomatoes, herbs, and shellfish, serving as mere afterthoughts. There are gourmets, bon vivants, and, if truth be told, gluttons who all speak of garlic the way wine connoisseurs speak of their favorite vintage and cheese lovers talk of the subtle distinctions in flavor of one variety over another.

The garlic haters, on the other hand, say it smells terrible. They can’t stand the way it comes out on the breath, the way the odor seems to ooze through the pores of the eater. They even joke that garlic is an excellent method of birth control; if one lover eats garlic, the other will maintain a distance of at least ten feet. For some people, garlic is even mildly toxic, upsetting their stomachs.

Garlic and alcohol are substances that are not metabolized. They are absorbed through the stomach lining, which is why they leave the telltale odor. And it’s why some people are sick to the stomach after ingesting them.

Fortunately, there is an aged garlic product that is detoxified and thus deodorized. Just as deodorized skunks make great house pets, so the more sociable garlic, with slightly altered chemistry and sold under the name Kyolic, can be used by people who can’t eat ordinary garlic. In fact, a number of studies indicate that Kyolic may be more effective than raw garlic when it comes to boosting the body’s immune system.

Why is garlic, in its original form or as the extract of the aged vegetable, good for you? Garlic contains germanium and selenium, which are sulfur-containing antioxidants that boost the immune system. In the study mentioned, conducted by Dr. Tariq Abdullah, Kyolic killed 20 percent more of the tumor cells in laboratory cultures than did raw garlic. And raw garlic is by itself one of the most potent boosters of your natural killer cells.

Kyolic has also been found more beneficial for hypoglycemics–people with low blood sugar levels–than raw garlic. The latter lowers the blood sugar level, unfortunately, but Kyolic stabilizes it. The aging process that creates Kyolic produces a supplement whose benefits I find stronger than those of raw garlic.

As enthusiastic as I am about barley grass, if someone were to ask me which single supplement he or she should use, I would recommend Kyolic garlic. It is among the oldest and most versatile of the documented natural remedies. When Hippocrates, the father of diagnostic medicine, was busy noting which treatments worked for the Greek people he treated, he listed garlic. A total of twenty-two ancient Egyptian remedies were found to use garlic, as noted in the Ebers Papyrus dating from the sixteenth century B.C.E. Garlic was a tool against the plague when it struck Marseilles in the 1770s. Albert Schweitzer found that, when he ran out of pharmaceutical supplies in his African mission, garlic successfully stopped dysentery. Louis Pasteur discovered that garlic had antibacterial properties. The Vikings would not go on long sea voyages without garlic. And, of course, as we know from fiction, garlic is an excellent defense against vampires.

Garlic’s value for your heart is well known. First, it contains properties for fighting “bad” cholesterol. We know now that high-density lipoprotein (HDL) cholesterol is not dangerous, but low-density lipoprotein (LDL) certainly is, because it can be oxidized by dangerous free radicals. Oxidized LDL is an enemy of the white blood cells, which become enlarged as “foam cells,” and ultimately are deposited on the arterial walls in the form of plaque. The lumen, the open space of the artery, becomes more and more narrow until it is completely clogged.

HDL works in a more positive fashion. It is thicker than LDL and acts a little like an older sibling assigned to keep the younger one out of trouble. HDL, in a way, takes the LDL by the scruff of the neck and escorts it to the liver, where it is broken down and removed from the body. LDL behaves itself only if it has not been oxidized. And it is the antioxidant quality of garlic that so diminishes the free radical damage to the cholesterol that LDL doesn’t need its sibling HDL to hang around. It can be safely removed by itself. The result is that the garlic reduces the start and the progression of arteriosclerosis.

Heart patients, therefore, are especially blessed by garlic, but it is important to check with your doctor before adding garlic to your regimen, because there are pharmaceuticals that match its chemical properties. This is especially the case with popular blood thinners. In fact, Germany licenses garlic supplements as drugs for the treatment of arteriosclerosis.

In the 1920s, the world was introduced to one of the most valuable yet dangerous drugs ever created. This was aspirin, and 25 percent of all people will, at some point, have a serious, perhaps life-threatening reaction to it. Even more important, some children may develop Reye’s syndrome from aspirin because their body chemistry is not sufficiently stable. Yet despite the risks, most emergency medical physicians and heart experts say that at the first sign of heart attack, you should take an aspirin and then call 911, because aspirin thins the blood, and this can delay or prevent a heart attack.

Garlic is natural aspirin, not because it contains salicylic acid, which was first identified in willow bark tea as a substance to ease headaches and reduce joint inflammation, but because it can help to prevent red blood cells from clumping together. Other qualities of garlic, so different from aspirin that they present no risk, dissolve clots and lengthen clotting time. This natural thinning of the blood helps every aspect of blood flow within your body. It is the safest source of prevention of heart attacks and strokes. Keeping that aspirin bottle tucked in with emergency medical supplies is still a good idea, but the regular consumption of Kyolic will almost certainly preclude the need for more drastic measures.

We know that garlic provides a benefit for the cardiovascular system. Perhaps you or someone you know has a little difficulty in walking. It doesn’t seem serious, but maybe it’s reached the point where you just don’t want to walk any more than you have to. You find that your legs feel weak, or you have a certain amount of leg pain. And when you stop walking to pause for a rest or sit down, the discomfort goes away.

That discomfort is caused by poor blood circulation in your legs. The technical term for the problem is intermittent claudication. Since it is known that garlic improves circulation to the body’s peripheries, studies were conducted with patients experiencing this problem. The regular use of garlic lengthened the distance they could walk without weakness or discomfort. And as a side benefit, their cholesterol levels were lowered, and their blood pressure dropped to a healthy level.

This is what happens when garlic becomes part of the diet and supplement program of those with heart problems. In these cases, we know that individuals who, by all rights of family history, should be experiencing problems with their hearts are not having problems. They are doing better than their ancestors. In longer-term studies, they have outlived everyone simply by adding garlic in one form or another.

Are these individuals genetically unique? Possibly, but it is doubtful. Instead, it is safe to assume that the garlic made the difference. Yet this is not scientific methodology. It is just common sense, which, when it comes to the use of garlic to counter genetics, makes for good medicine.

Where scientific methods can be applied, as with antibacterial factors, garlic has been repeatedly proven safe and effective. Probably every woman and most men have heard of “yeast infection” (a.k.a. yeast syndrome or chronic candidiasis), a term defined mostly through symptoms. Blood tests or stool cultures can reveal the infection. But usually it is determined through a careful, complete physical history that reveals such problems as depression, irritability, vaginal yeast infections, frequent bladder infections, chronic fatigue, lack of energy, reduced sex drive, inability to concentrate, and other distresses. Any one of these is a concern; several in combination generally indicate the presence of chronic candidiasis.

Because yeast infections, along with fungus problems and viral infections, are not usually life-threatening, double-blind studies have been carried out on garlic as a treatment. The findings from these studies have repeatedly shown the value of garlic, in some cases used alone, and in others administered in combination with other natural therapeutics.

Note: Be certain not to self-medicate with garlic in response to the problems mentioned above. With candidiasis, for example, there may be several other concerns. You must eliminate from your diet alcohol, high-sugar foods, and other substances with a high-yeast or mold content. Your digestion must be improved. Detoxification of the liver must be pursued and the immune system strengthened. Then you must coordinate your efforts with your doctor’s for continued treatment, because yeast infections can lie dormant and suddenly return if you fail to continue your care after the immediate flare-up.

Garlic is also excellent in the handling of body fat. This does not mean that you can eat garlic instead of getting exercise. You might be able to scare a vampire, but sloth, indolence, and overindulgence have no fear of garlic. Garlic, however, is acknowledged as one of the most effective means of reducing fat in conjunction with a healthy diet and exercise program.

This is not to say that you can eat all you want, using garlic as a magic pill. What you eat and how much you eat determine one source of fat, perhaps the most controllable source of fat in your body. The younger you are, the easier it is to burn the fat you take in through diet. As you get older, the ability to burn fat decreases. You may be as active at forty as you were at twenty, but you will find that a diet that left you with a flat stomach and slim hips in your youth is now forcing you to go to a larger size of clothing. This is natural and not unhealthy, but excess fat is never a good situation.

Note: Recent reports of long-term studies on body weight and health show that excess weight alone is not the danger it was once believed to be. The more excess fat you carry, the greater the stress on your body, but repeated dieting causes even greater stress. An important factor is your volume of exercise. An overweight person whose weight is stable, who is physically active, and who eats a healthy diet, including the appropriate supplements, will be far better off than the “hard body” whose diet and exercise habits are wrong. To be fat is not necessarily to be unhealthy. It is simply the most visible sign of a potentially dangerous condition that may manifest itself if you do not respect all the other factors that insure good health.

The fat we scold for clinging to our bodies as we age comes from two sources. One fat stays there because our bodies fail to break it down and eliminate it. The other fat is made by our bodies, a process known as endogenous lipogenesis. Both may be products of our lifestyle as much as our age and eating habits.

For example, do you drink? I don’t mean to excess. I mean a beer after work or some wine with dinner. Nothing to worry about. Nothing excessive.

What you probably don’t realize is that the alcohol you consume interferes with the breakdown of dietary fats and stimulates endogenous lipogenesis. In other words, alcohol triggers the body’s fat-producing mechanism and inhibits the body’s ability to break down and eliminate fat.

Taking garlic is not an excuse to drink. I don’t want to see you spending your happy hour sipping margaritas and downing quantities of Kyolic. However, garlic does slow or stop our body’s production of fat by breaking down the lipids and enhancing the elimination of various by-products. Garlic also moves lipids from tissue to the bloodstream for eventual removal. Garlic can dramatically reduce the bad consequences of a multitude of dietary “sins.” It truly is a good thing.

Perhaps one of the most promising findings of research on the use of garlic has come in the field of cancer. The Memorial Sloan-Kettering Cancer Center in New York has found that garlic inhibits the growth of cancer cells in the laboratory. And in a study of colon cancer conducted at the M. D. Anderson Hospital in Houston, Dr. Michael Wargovich determined that diallyl sulfide, a major component of garlic, reduced the growth of colon cancer in mice. A related experiment showed that diallyl sulfide may prevent cancer of the esophagus and help in preventing prostate cancer in some individuals.

The experiments have been thorough and the results encouraging. Garlic is gradually proving to be an effective treatment for cancer as well as a preventive, and is now being tried, in conjunction with other treatments, on immune-system disorders like AIDS. Laboratory results are consistently positive, and trials on humans show similar findings, though they are not yet far enough along for garlic to be stipulated as a treatment. However, as I said at the start of this chapter, if I had to take just one supplement for my health, it would be Kyolic garlic.
Copyright© 1999 by James F. Balch

From:
10 Natural Remedies That Can Save Your Life
by James F. Balch

Garlic: One of 10 Natural Remedies That Can Save Your Life is a post from: Chronic Illness.org

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What causes CFS?

The exact cause of CFS is unknown. A distinct or direct cause has not been positively identified.

Some studies have shown that Chronic Fatigue Syndrome may be caused by inflamed nervous system pathways, Mycoplasma bacterial infection, or viral illness (such as Epstein-Barr) complicated by an inadequate or dysfunctional immune response. For some, the condition can occur following an injury, infection preceding or following surgery (e.g., peritonitis), or other traumatic body events that weakens or adversely affects the immune system. Age, environment, genetic disposition, prior illness, or stress may also be factors. Like most autoimmune illnesses, CFS most commonly occurs in women, usually ages 30 to 50.

Symptoms of CFS

What are the symptoms of CFS?

Many of the symptoms of CFS are similar to those associated with the flu (muscle aches, headache, and fatigue).

However, unlike the flu, while with CFS these symptoms may ebb and flow, they never go away.

(Imagine dealing with flu symptoms on a daily basis and you know how someone with CFS feels on a good day.)

What are the primary symptoms of CFS?

Primary symptoms include:

• New onset fatigue or tiredness that lasts for at least 6 months and is not relieved by normal rest
• Full-body fatigue serious enough to restrict normal activity that develops from far less exertion than was possible before the illness

What other symptoms are sometimes present?

Additional symptoms include:

• Constant headaches, different those previous in pattern, quality, or severity
• Feeling unrefreshed after normally adequate sleep
• Forgetfulness, cognitive impairment including confusion or difficulty concentrating, or irritability
• Joint pain, often moving from joint to joint (migratory arthralgias), without joint swelling or redness
• Low-grade fever (101F or less)
• Lymph node tenderness and swelling in the neck or armpit
• Muscle aches (myalgias)
• Exercise intolerance: Muscle fatigue that lasts more than 24 hours after an amount of exercise that would normally be easily tolerated

• Muscle weakness, all over or multiple locations, not explained by any known disorder

• Sore throat, red but without drainage or pus

What is the difference between CFS and “chronic fatigue”?

Chronic Fatigue Syndrome (ICD10-CM or WHO ICD-10 G93.3) has a different medical diagnostic code than idiopathic Chronic Fatigue (WHO F48.O).

There are different symptom requirements used to diagnose these different entities.

Chronic Fatigue Syndrome and chronic fatigue are sometimes incorrectly used as synonymous, when in actuality they are two entirely different diagnoses. Chronic fatigue is often a symptom of other conditions, such as Chronic Fatigue Syndrome, depression, and so forth.

Patients can sometimes get relief from the chronic fatigue that accompanies other conditions. As the condition causing the chronic fatigue improves, the chronic fatigue lessens.

At present, there is no cure for (or complete relief from) Chronic Fatigue Syndrome.

CFS Tests

Everybody gets tired! How is the fatigue of CFS different?

The fatigue of CFS is all-encompassing. It involves not only the feeling of having gone without rest (even after getting a full night’s sleep, for those that fortunate; disrupted or irregular sleep patterns is often another side effect of CFS), the fatigue includes muscle weakness, cognitive impairment, and ongoing headaches of varying degrees.

Tests have shown that many CFS victims already start off with a lower-than-normal oxygen level in the brain, and exercise, instead of increasing it, actually makes it go lower. In addition, studies such as those noted in a 2004 article Muscle Metabolism with blood flow restriction in Chronic Fatigue Syndrome in the Journal of Applied Physiology have shown that blood flow to the muscles is also altered.

Melissa Kaplan describes this by saying that “the body reacts to even mild exercise, like a short walk, as if it has run a marathon on top of working an 80-hour week: extreme pain, fatigue, cognitive dysfunction…and it lasts for 36-48 hours.”

What are some of the tests for CFS?

Physical examination is usually conducted to confirm the fever, lymph node tenderness, lymph node swelling, or other symptoms, but often examination alone is not considered conclusive.

A health care provider can deduce a diagnosis of CFS only after ruling out all other known possible causes of fatigue, such as:

• Drug dependence
• Endocrine diseases (such as hypothyroidism)
• Infections
• Muscle or nerve diseases (such as multiple sclerosis)
• Other illnesses (such as heart, kidney, liver diseases)
• Other immune or autoimmune disorders
• Psychiatric or psychological illnesses, particularly depression (because the severe fatigue of CFS itself may bring about depression, a diagnosis of depression does not rule out CFS; however, fatigue related to depression alone must be ruled out in order for CFS to be diagnosed)
• Tumors

What symptoms must be present for a CFS diagnosis?

A diagnosis of CFS must include:

• Absence of other causes of chronic fatigue (excluding depression when other symptoms are present)
• At least 4 of the other symptoms listed
• Extreme, prolonged fatigue

There are no specific tests to confirm the diagnosis of CFS; however, a variety of tests are usually conducted in order to exclude other possible causes of the symptoms.

Note: In order to rule out muscle or nerve diseases and/or psychiatric or psychological illnesses, a complete neuro-psych exam may be a part of the diagnosis process.

Some typical findings on tests that, while not specific enough to diagnose CFS, are seen consistently in people who are eventually diagnosed with the disorder. These include:

• Brain MRI that shows evidence of swelling in the brain or destruction of some of the nerve cells (demyelination)
• Higher levels of specific CD4 T white blood cells compared to other types of white blood cells (e.g., CD8 T cells)
• Specific white blood cells (lymphocytes) containing active forms of EBV or HHV-6

What treatment is available for CFS?

At present, no treatment has been proven to be effective as a way to cure CFS. Rather than hope for a cure, the symptoms are treated instead. Many people with CFS experience depression and other psychological problems that may improve with treatment.

Some of the proposed treatments include:

• Antianxiety drugs to treat anxiety
• Antidepressant drugs to treat depression
• Antiviral drugs, such as acyclovir
• Drugs to fight “hidden” yeast infections, such as nystatin
• Medications to reduce pain, discomfort, and fever

Unfortunately, for many with CFS, medications can cause adverse reactions or side effects that are worse than the original symptoms of Chronic Fatigue Syndrome.

While patients with CFS are encouraged to maintain active social lives, and mild physical exercise may also be helpful, for many this isn’t possible.

What long-term effects should somebody with CFS expect? (In other words: What is the prognosis?)

The long-term outlook for patients with CFS is difficult to predict at the initial onset. Some patients have been reported to completely recover after six months to a year. Others may take longer for a complete recovery. Some never recover or return to pre-illness energy and wellness levels.

What are the complications of CFS?

CFS causes what might be considered lifestyle restrictions. For people for whom the fatigue is so severe or unpredictable that they are essentially disabled and homebound during much of the course of the illness, this leads to social isolation and an inability to maintain steady employment.

What should I do if I suspect I have CFS?

Call for an appointment with your health care provider if you experience persistent, severe fatigue, with or without other symptoms of CFS. Remember: There are other serious disorders that can cause similar symptoms; those need to be excluded.

Note:

Canadian CFS Diagnostic Code

Because of the efforts of The Myalgic Encephalomyelitis Association of Ontario, Dr. Alison Bested, and others, Chronic Fatigue Syndrome (CFS) now has an official diagnostic code (OHIP Diagnostic Code 795) by the Ontario Medical Association as a Neurological Illness. According to information on the The National ME/FM Action Network, the association had hoped to get “Myalgic Encephalomyelitis (ME)” included in the diagnostic code definition, but they’re celebrating the success all the same.

Exercise While Sitting Down (with the help of the Bounce Back Chair)

Because the bounce back exercise chair increases the flow of lymphatic fluids throughout the body by as much as 10 times their normal rate, it helps the body remove toxins, strengthens the immune system, increases muscular strength, and improves blood circulation. Also sometimes referred to as the Bounce Back Fitness Chair, Bounce Back Exercise Chair, and Bounce-Back Chair.

Pictures of the Bounce Back Exercise Chair

Chronic Fatigue Syndrome Resources

View the Chronic Illness Serenity Prayer (multi)
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What is Chronic Fatigue Syndrome is a post from: Chronic Illness.org

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My Amazing Crunchless Abs is a post from: Chronic Illness.org

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Note: I wrote an initial article about the Bounce Back Exercise Chair in 2005 while working as the about.com guide for the Fibromyalgia and Chronic Fatigue Syndrome site. Getting a chair for myself has been my goal since that time and I now finally have one! I’ve had mine for a week, and I can tell a difference already; it’s especially helped lessen some of my lower back pain. … Now for the article:

Maintaining or improving one’s physical fitness is difficult for a healthy person. It’s even more so for those with Fibromyalgia, and especially so for those who are exercise intolerant because of Chronic Fatigue Syndrome. Although it doesn’t promise an easy solution, the Bounce Back Fitness Chair does provide a safer fitness alternative. Because it combines the function of low-impact aerobics while the user is seated in a comfortable chair, anyone with balance or most other mobility problems can perform the exercise.

Ouida Stephens, RN, has worked with Chronic Fatigue Syndrome and Fibromyalgia patients through physician referral since 1993, and says that the Bounce Back Chair is of benefit to those who have a limited tolerance for physical exercise because the Bounce Back Exercise Chair makes it possible for the patient to approach exercise carefully, and slowly increase exercise duration times as the patient is able. Ouida says that “patients who have done well … have started with as low as five minutes daily and taken as long as six months to increase their [exercise] time to thirty minutes.”

An article by Carol Sieverling on ImmuneSupport.com states that Chronic Fatigue Syndrome expert Dr. Paul Cheney, M.D., Ph.D. recommends the bounce back exercise chair for “low level, non-vigorous bouncing for ten to fifteen minutes every other day.” An article that appeared in the July/August 1998 issue of The CFIDS Chronicle states that Dr. Chaney “cautions against aerobic exercise — any kind of sustained activity, such as running or walking or swimming” because such prolonged activity can damage the mitochondria (energy producing part of the cells), which appears to be malfunctioning in Chronic Fatigue Syndrome and Fibromyalgia patients; the mitochondria appears to be vulnerable to excessive aerobic exercise. Instead he “recommends a routine of 10 seconds of activity followed by 60 seconds of rest,” such as the rebounding or bouncing exercise possible through use of the Bounce Back Fitness Chair.

According to information on the Allfit site, the chair is built for those who weigh between 70 to 250 pounds. Upgrades are available to make the chair suitable for those who weigh between 250-350 pounds and 300-450 pounds.

The exercise performed on the chair:

• Stimulates the flow of lymphatic fluids through the body by as much as 10 times their normal rate
• Assists the body in removing toxins, strengthening the immune system, and building strong, healthy cells
• Improves blood circulation and oxygenation to tissue and organs
• Builds strength and muscle
• Provides a means to manage physical stress

The Allfit site further states that the chair specifically helps those with Fibromyalgia because stronger muscles are used to exercise weaker ones.

Ouida Stephens, RN of Sun-Ray Supply does provide this warning about the chair: “The exercises seem so simple and innocuous that it is very easy to over-exert. Failure to advance slowly with this equipment can lead to a major relapse for CFIDS* patients.”

*Chronic Fatigue Syndrome (CFS) is also sometimes referred to as CFIDS, which is an acronym for Chronic Fatigue Immune Dysfunction Syndrome.

Although none of them are from Chronic Fatigue Syndrome or Fibromyalgia patients, there are some interesting testimonials about the Bounce Back Fitness Chair on the Allfit site that provides quotes from forums maintained by the Department of Neurology at Massachusetts General Hospital.

June 2008 update:

Until I am ready to announce the sites that I will be providing for this purpose, further explanations about how to assemble the chair, plus why it’s also helpful for those with diabetes, arthritis, and some back problems and information on the other benefits can be found at:

Allfit

Or you can contact Doug at Allfit directly by calling (888) 272-2225 or by e-mail.

February 2011 update:

Now that Bounce Potato’s Accessibility Journal is online, I’ll soon be blogging about my experiences with the bounce-back exercise chair as well as the things I’m doing to cope with my disabling chronic conditions and illnesses.

Special thanks to Ouida Stephens, RN of Sun-Ray Supply for in 2005 providing me with the information about the Bounce Back Fitness Chair; her answers to my questions helped me able to write my original article.

# # #

Copyright © 2005-2009 Pamela Rice Hahn
Copyright © 2010-2011 Blue Rose Bouquet Group, LLC
All Rights Reserved

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Article by David L. Hebert

Meditation, in its simplest form, is simply a way of calming your inner mind and bringing it into balance with your body. This balance can let your body ease its way into providing you with relief from the pain associated with Chronic Fatigue Syndrome, Fibromyalgia, arthritis, and other disabling conditions.

Often, because your days are hectic and you have so many thoughts running through your mind at the same time, your body can go into sensory overload. As a result, it can feel like your body just wants to shut down, similar to the way a marathoner can seemingly hit a “wall” where it seems he or she just can’t go on anymore. (The 24/7 flu t-shirt compares the fatigue and pain of Chronic Fatigue Syndrome and Fibromyalgia to how one feels after running a marathon.)

By practicing daily meditation, you can help your mind and your body find quiet time to mend and re-establish a sense of equilibrium.

There really isn’t a wrong way to meditate. As long as you’re letting your mind rest, you’re probably accomplishing your goal. If you find that as you try to meditate, your thoughts keep running to how you’re ever going to find the energy to get the dishes done or deal with any of those other things that coping with a disabling condition makes seem overwhelming, just gently push those thoughts away.

A particularly beautiful way of dealing with thoughts like this is to picture the thoughts being wrapped in a clear bubble — a nice soap bubble with an iridescent rainbow that shimmers on the surface. Imagine the thought inside the bubble, bouncing around lightly inside that clear, shiny sphere — and then imagine that bubble just floating lightly upwards, bouncing slowly to and fro in the breeze — until it climbs so high you can’t even see it anymore.

You don’t have to sit in a yoga position and have absolute quiet to enter a meditative state. You can meditate while walking, or bathing, or even — heaven forbid — doing the dishes. The important thing is that you let your mind take that important relaxing break.

And while you’re doing it, use your imagination to help heal your body, too. One particularly effective way is to envision your body being wrapped in a gentle pink cloud. (One of my favorites is pretending that it’s a nice big wad of sweet, pink cotton candy.) Pink is a soothing color, and you can let yourself feel the warm sensations of the color spreading through your body and carrying a nice healing glow along with it.

If you have a part of your body that is being persistently painful, send an extra bit of this warmth and color to that part. Imagine it spreading a healing energy throughout the area, and be thankful that your body has the time to indulge itself in healing. You don’t have to believe in the process whole-heartedly; you just need to go through the actions. Your body and your mind will do the rest.

Try it for a week or two. At the very least, you’ll find that you’ve been able to enjoy some nice quiet moments to yourself. More than likely, you’ll find that the pain has started to dissipate, and you’ve discovered a new way to bridge the gap between mind and body and have found a way to help the body heal itself.

This is by no means the only way to meditate. It’s just one of a million. But it’s a great start, and it really is fun to try. Let yourself indulge in it, and then hop onto the Chronic-Illness.org Forum to share your results with others.

David L. Hebert is a lawyer and writer from Manitoba, Canada. He is the author of The Everything Learning French Book, the upcoming Speak French (In No Time) (available in 2006), and Freedom of the Press . For more information about the author of this article, you can visit his Web site — Lurquer.com.

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This Cochrane review study is a sore subject!

I obtained a copy of the entire review, and it is just horrible. The author examined 9 studies, accepted only 5, and none were from the USA. Here are some of the problems:

1. Fatigue was the main outcome measured; depression and quality of life were secondary outcome measurements.

2. Fukuda international criteria for Chronic Fatigue Syndrome (CFS) were used in only two studies, and it appears that the subjects were not terribly ill.

3. In two of the studies (Fulcher and Appleby), 80-92% of subjects were working at the time of the study; in Powell’s study 35% were working. The others did not report. Obviously this was not a very sick cohort.

4. Of the 5 studies, the Appleby study was the only one with a rigorous exercise plan (70-75% of aerobic capacity for 30 minutes). This study did NOT show any improvement in subjects, and had the highest dropout rate. The 4 other studies used a low level of exercise (40% of aerobic capacity).

5. The so-called “experts’ [plural] that were listed were Dr. Peter White [only], whom I believe works closely with Wessley and Sharpe. Read biased.

6. Even though the authors concluded “patients with CFS who are similar to those in the trials should be offered exercise therapy,” the press did not make it clear that these CFS patients were rather high functioning, and that most CFS patients could not tolerate such exercise.

7. The authors also concluded from this same cohort that “exercise therapy may not worsen outcomes on average.” This is very misleading since it is part of the Fukuda definition that exercise causes post-exertional malaise, and all Persons with Chronic Fatigue Syndrome (PWCs) may trigger prolonged relapses if they overexert.

Sadly, this Cochrane review study once again sends the incorrect message to primary physicians — that they should exercise all PWCs and not worry about post-exertional sequelae.

Charles W. Lapp, MD

HUNTER-HOPKINS CENTER, P.A.

E-mail contact

Web site

…specializing in CFS, ME, FM, and related illnesses.

Charles W. Lapp, MD Provides a Response to the “Exercise May Help Those with CFS” Study is a post from: Chronic Illness.org

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Addendum: Many patients with Chronic Fatigue Syndrome suffer from exercise intolerance. Therefore, be sure to see Dr. Lapp’s response to this study.

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