The following is part five of a five-part excerpt of the new book, Women’s Health for Life (DK 2009).  Women’s Health for Life is a unique compilation of women’s health information, designed to help women optimize their health, well-being, and quality of life.  Edited by women’s health expert and advocate, Dr. Donnica Moore, this book is team written by women physicians for women readers.  It discusses topics from contraception to infertility; migraines to menopause; cervical cancer to colon cancer; and heartburn to heart disease.  While many readers will want to read this book from start to finish, it provides easy access to specific information when it’s needed.  Uniquely, this book provides clear illustrations, graphs, and charts making it as easily understood as a cookbook. While, there is no single “recipe” for good health, the many ingredients are discussed in this book’s 16 chapters.  Organized by bodily system, each chapter starts out with an explanation of how that system works and ways to maintain healthy function through diet, exercise, and other self-help measures. This is followed by an explanation of some of the medical conditions affecting that particular system and how they should be treated, focusing specifically on recommendations for women.  To order Women’s Health for Life from amazon.com, click here:

The following segment is taken from Chapter 2, “Understanding the Changes” which gives a decade-by-decade overview of the physiologic and psychologic changes women experience as we age.  It also serves to remind us of the common sense rules of health that many of us are liable to forget.  Much of that information is given in the section focusing on the 20′s, so don’t skip over this, even if you’re older!

Routine screening tests recommended in your 30s:

Compared to your 20s, the number of routine checkups and screening tests that are recommended during your 30s has increased significantly. Many are precautionary while others, such as the weight/height checks and the mammogram screening, provide baseline recordings that will prove useful later on. Ask your doctor for advice about the best way to coordinate all these tests.

✔ Do a monthly breast self-examination
✔ Have a complete physical examination every year
✔ Have a complete gynecological examination every year
✔ Have a Pap smear according to your doctor’s recommendations: for most women, this will be every year
✔ Have your eyes tested every five years
✔ Go for a twice-yearly dental checkup and cleaning
✔ Have your weight and height measured every year: this will help measure any bone loss later on
✔ Have your blood pressure measured every year
✔ Have your cholesterol and triglyceride levels checked every five years
✔ Have a complete skin check for moles or suspicious abnormalities every one to two years
✔ Have an annual digital rectal exam, with fecal occult blood testing to check for colorectal cancer
✔ Have an annual clinical breast exam
✔ Have an HPV test for cervical cancer: if this is normal and you are in the same mutually monogamous relationship, this should be repeated every three years
✔ If you are thinking of getting pregnant, see your doctor for preconception advice. You may also need screening tests and a Pap smear before you conceive ✔ Have a mammogram: 35 is the age at which many doctors recommend a baseline mammogram (especially in women with a family history of early breast cancer), although the American Cancer Society recommends beginning routine mammogram screening at age 40
✔ Have urinalysis as recommended by your doctor
✔ Have your hemoglobin and hematocrit checked as recommended by your doctor
✔ If you are not in a mutually monogamous relationship, your doctor may recommend STD screening

Questions to Ask Your Doctor in Your 30′s: The following are just some of the questions you can ask your doctor about at the start of your 30s:

• Should I be taking any vitamins or supplements?
• Are there additional screening or diagnostic tests that I need?
• When should I have my first/next mammogram?
• Are there any behavioral or lifestyle changes I should make for optimal health?

Vitamin and mineral supplements for women in your 30s

The following vitamin and mineral supplements can help you get the most out of life. However, you should note that some single-dose vitamin supplements can interact harmfully with some medications or with the absorption of other nutrients, so you should always check with your doctor before you begin to take them.

Multivitamins: Most women who are menstruating will benefit from a daily multivitamin supplement with iron; multivitamins have also been shown to reduce your risk of colds and flu.

Folic acid/omega-3 fatty acids:  If you are breast-feeding, pregnant, or thinking of starting a family, take a folic acid supplement (400 micrograms/day) and an omega-3 fatty acid supplement (200 mg/ day). While many prenatal vitamins contain these ingredients, not all of them do-so make sure that you check the label.
Calcium: If your diet is not giving you enough calcium (1,200 mg/day or the equivalent of four glasses of skim milk), you may want to take a daily calcium supplement to make up the difference. However, speak to your doctor before you do and see later chapter to read more about a healthy diet.

Vitamin D: This essential vitamin aids calcium absorption and bone health. Most multivitamins contain vitamin D, but always check the dosage. Most women need between 1,000 and 1,500 IU of vitamin D each day. While it is in many foods, vitamin D is also made in the skin in response to exposure to sunlight (even if it’s not a sunny day). If you don’t receive 20 minutes of daily sunlight exposure, or are diligent about using total sunscreen, you may need to consider supplements.

Vaccines for your 30s You may think you don’t need any more vaccines, unless you’re going to an exotic destination. However, you may want to consider having the following during your 30s.

Flu: You may be in a high-risk group for needing a flu shot annually, but even if you aren’t, you should get the flu shot if you don’t want this illness.

Rubella (German measles): If there’s a chance that you may become pregnant, make sure you are immune to rubella. A rubella infection during the first trimester of pregnancy can cause major fetal abnormalities.

Tetanus, diphtheria, pertussis (TDP/tDap): Ask your doctor when you had your last TDP shot. You will need a tetanus booster every 10 years.

The following is part four of a five-part excerpt of the new book, Women’s Health for Life (DK 2009).  Women’s Health for Life is a unique compilation of women’s health information, designed to help women optimize their health, well-being, and quality of life.  Edited by women’s health expert and advocate, Dr. Donnica Moore, this book is team written by women physicians for women readers.  It discusses topics from contraception to infertility; migraines to menopause; cervical cancer to colon cancer; and heartburn to heart disease.  While many readers will want to read this book from start to finish, it provides easy access to specific information when it’s needed.  Uniquely, this book provides clear illustrations, graphs, and charts making it as easily understood as a cookbook. While, there is no single “recipe” for good health, the many ingredients are discussed in this book’s 16 chapters.  Organized by bodily system, each chapter starts out with an explanation of how that system works and ways to maintain healthy function through diet, exercise, and other self-help measures. This is followed by an explanation of some of the medical conditions affecting that particular system and how they should be treated, focusing specifically on recommendations for women.  To order Women’s Health for Life from amazon.com, click here:

The following segment is taken from Chapter 2, “Understanding the Changes” which gives a decade-by-decade overview of the physiologic and psychologic changes women experience as we age.  It also serves to remind us of the common sense rules of health that many of us are liable to forget.  Much of that information is given in the section focusing on the 20′s, so don’t skip over this, even if you’re older!

The 30s are generally considered a time of robust health for most women, but this decade can also be a transitional time in terms of your physical and emotional well-being. One of the biggest physical and psychological health issues may be learning to take care of your own health needs, despite the competing demands of caring for others or focusing on your career and relationships.

For many women, their 30s (and increasingly their 40s) are a time when they face fertility challenges and concerns. A growing percentage of women delay pregnancy until their 30s. While this is a relatively small proportion, a woman over 35 not only has a greater risk of infertility, but is also considered to be of “advanced maternal age,” which carries medical risks for the mother. For example, if you give birth to your fi rst child after the age of 35, you have approximately twice the risk of developing breast cancer as a woman who gave birth before the age of 20.  A woman who has never given birth has a significantly increased risk of ovarian cancer.

Years ago, women over 35 were’nt allowed to take the contraceptive pill.  We now know that it is safe for healthy, nonsmoking women over 35 to continue taking low-dose oral contraceptives as long as they have no other contraindications.

While the average age of menopause is 51, many women enter it earlier, either naturally, surgically (by removal of the uterus or the ovaries), or as a result of chemotherapy or radiation. This may well happen during the 30s. Then there is a condition called premature ovarian failure (POF), which is estimated to affect 1 in 100 women between the ages of 30 and 39. In fact, women can be affected with POF at any age, even during their teens. Statistics show the average age of POF in the US is 27.5 years.

Fertility is not the only physiological factor which declines in your 30s. Ironically, 35 is a “magic number” of sorts in women’s health. You may notice the beginning of agerelated visual changes after 35 and many women may notice changes in their hair color and in their skin. It’s also a turning point because you are at increased risk of a number of medical problems and concerns, including:

• miscarriage
• birth defects (notably Down syndrome; see chart, opposite)
• depression
• breast cancer
• the beginning of bone loss
• slower metabolism, which may take it more diffi cult for you to lose weight
• fi broids
• high blood pressure
• autoimmune diseases

The following is part three of a five-part excerpt of the new book, Women’s Health for Life (DK 2009).  Women’s Health for Life is a unique compilation of women’s health information, designed to help women optimize their health, well-being, and quality of life.  Edited by women’s health expert and advocate, Dr. Donnica Moore, this book is team written by women physicians for women readers.  It discusses topics from contraception to infertility; migraines to menopause; cervical cancer to colon cancer; and heartburn to heart disease.  While many readers will want to read this book from start to finish, it provides easy access to specific information when it’s needed.  Uniquely, this book provides clear illustrations, graphs, and charts making it as easily understood as a cookbook. While, there is no single “recipe” for good health, the many ingredients are discussed in this book’s 16 chapters.  Organized by bodily system, each chapter starts out with an explanation of how that system works and ways to maintain healthy function through diet, exercise, and other self-help measures. This is followed by an explanation of some of the medical conditions affecting that particular system and how they should be treated, focusing specifically on recommendations for women.  To order Women’s Health for Life from amazon.com, click here:

The following segment is taken from Chapter 2, “Understanding the Changes” which gives a decade-by-decade overview of the physiologic and psychologic changes women experience as we age.  It also serves to remind us of the common sense rules of health that many of us are liable to forget.  Much of that information is given in the section focusing on the 20′s, so don’t skip over this, even if you’re older!

Women’s Health Lists for Women in Their 20′s:

Tests recommended in your 20s These are the tests and checkups which it is useful to have during your 20s. Some of the routine checkups, such as the breast self-exam, you can and should do yourself on a regular basis. You can ask your doctor, dentist, and optician for the others as appropriate. While different insurance plans may vary in their coverage, these are the medical recommendations.

✔ Do a monthly breast self-examination
✔ Have a Pap smear according to your doctor’s recommendations: for most women, this will be every year
✔ Have your eyes tested every five years
✔ Go for a twice-yearly dental checkup and cleaning
✔ Check your skin regularly for any changes.
✔ If you are thinking of getting pregnant, see your doctor for preconception advice. You may also need screening tests and a Pap smear before you conceive.

Vitamin and mineral supplements in your 20s The following vitamin and mineral supplements can help you become more healthy.

Multivitamins: Most women who are menstruating benefit from a daily multivitamin with iron.
Folic acid/omega-3 fatty acids: If you are breast-feeding, pregnant, or are thinking of starting a family, take a folic acid supplement (400 micrograms/day) as well as an omega-3 fatty acid supplement (200 mg/day).

Calcium and vitamin D:  If your diet isn’t giving you 1,200 mg/dayof calcium, you may need calcium and vitamin D supplements.

Questions to ask your doctor in your 20s

The following are just some of the questions you can ask your doctor about at the start of your 20s:

• Are there any vaccines I need?
• Should I be taking any vitamins or supplements?
• Do I need to think about having any additional screening or diagnostic tests?
• Are there any behavioral or lifestyle changes I should make for optimal health?

Leading causes of death for women in their 20s Statistical research in the US shows that the leading causes of death among women in their 20s are:

1. Accidents
2. Cancer
3. Murder
4. Suicide
5. Heart disease
6. Pregnancy complications
7. Birth defects
8. HIV/AIDS
9. Diabetes
10. Stroke

Vaccines for your 20s Consider having the following vaccines during your 20s.

HPV Vaccine:  This vaccine prevents two of the cancer causing strains of human papilloma virus (HPV), which is the cause of cervical cancer. It is approved for women up to age 26. While it is ideally given before a woman becomes sexually active, ask your doctor if it is right for you.

Flu:  Many groups of people are on the list of who “should” receive a flu shot annually. You may think you don’t need one, but if you don’t want to get a bout of flu you should get the flu shot.

Tetanus:  You will need a tetanus booster every ten years.

Catch-up vaccines: Ask your doctor if you need any vaccinations that you missed in your childhood. For example, you may have missed your rubella (German measles) vaccine (catching rubella during the first trimester of pregnancy can cause major fetal abnormalities) or your varicella (chickenpox) vaccine.

The following is part two of a five-part excerpt of the new book, Women’s Health for Life (DK 2009).  Women’s Health for Life is a unique compilation of women’s health information, designed to help women optimize their health, well-being, and quality of life.  Edited by women’s health expert and advocate, Dr. Donnica Moore, this book is team written by women physicians for women readers.  It discusses topics from contraception to infertility; migraines to menopause; cervical cancer to colon cancer; and heartburn to heart disease.  While many readers will want to read this book from start to finish, it provides easy access to specific information when it’s needed.  Uniquely, this book provides clear illustrations, graphs, and charts making it as easily understood as a cookbook. While, there is no single “recipe” for good health, the many ingredients are discussed in this book’s 16 chapters.  Organized by bodily system, each chapter starts out with an explanation of how that system works and ways to maintain healthy function through diet, exercise, and other self-help measures. This is followed by an explanation of some of the medical conditions affecting that particular system and how they should be treated, focusing specifically on recommendations for women.  To order Women’s Health for Life from amazon.com, click here:

The following segment is taken from Chapter 2, “Understanding the Changes” which gives a decade-by-decade overview of the physiologic and psychologic changes women experience as we age.  It also serves to remind us of the common sense rules of health that many of us are liable to forget.  Much of that information is given in the section focusing on the 20′s, so don’t skip over this, even if you’re older!

Top 10 good habits for life Get into good habits when you are as young as possible, preferably in your 20′s. This will help you lay the foundations for enjoying your life right through the next decades.

1. Eat a balanced diet Include five servings of fruit and vegetables a day
2. Maintain a healthy weight.  Calculate your Body Mass Index (BMI)
3. If you smoke, stop.  If you need help, join a support group or talk to your doctor
4. Moderate your drinking.  Limit your alcoholic intake to fewer than 2 units per day
5. Drive carefully.  Accidents, including motor vehicle accidents, are a leading cause of death.
6. Get a good night’s sleep.  Sleep deprivation affects your mood, productivity, relationships, and safety.
7. Practice responsible sexual behavior.  If you don’t want to get pregnant, use contraception.
8. Brush and floss your teeth routinely.  Good oral hygiene protects your overall health, not just your teeth.
9. Drink 8 to 10 glasses of water per day. Water is essential for many of your bodily functions.
10. Protect yourself from the sun.  Always wear protective clothing and sunscreen in the sun.

Understanding the Changes in Your 20′s: The decade of your 20′s is generally exciting. You are brimming with youth and vitality and until you become a mother, you will have plenty of “me time.” Use your personal time well by taking care of yourself and setting good health habits for life. It will stand you in good stead for what, hopefully, will be a long and healthy future.  The earlier you start caring for yourself, the more you will benefit as you age, but it’s never too late to start.

Fertility and sexual health Your 20s are a time when you are generally fertile and may be sexually active. The average age of a first pregnancy in the US is now 25. Since so many women become pregnant for the first time-either intentionally or unintentionally-during their 20s, family planning and preconception counseling are especially important during this decade. We think of the importance of prenatal care as mostly benefiting the baby, but pregnancy-related complications are significant risks for the mother as well: as you can see from the cause of death figures presented on page 29, pregnancy-related complications are the sixth leading cause of death for women in their 20s. You may have contracted a sexually transmitted disease (STD) during your adolescence. HIV/ AIDS is the most scary: it is the eighth leading cause of death for women in this age group, but there also more than 75 other STDs, and many of these can have a devastating effect on your longterm health and fertility. You need to practice safe sex religiously and have appropriate screening tests as recommended.

Cancer It is rare for women in their 20s to be affected by cancer. However, you are never too young to be vigilant and to take precautions, especially concerning melanoma, the most aggressive form of skin cancer and, for women aged 25-29, the most common cancer of all. Make sure you protect yourself properly from the harmful effects of the sun and see your doctor if you spot that any moles have changed appearance.

Addictive behaviors Unfortunately, for many women, the 20s may be characterized by bad habits that started with risktaking behavior. If you do have addictive behaviors, such as smoking, alcoholism, or eating disorders, try to kick them fast. You will find that there’s plenty of help around if you need it. Drive carefully, too, because accidents, including motor vehicle accidents, are the leading cause of death in women in their 20s.

Mental health Mental health is important at every age, but the 20s can be a time of particular strain due to what are often major changes in your life and in your role in society. As a result, depression is common and suicide is the fourth leading cause of death in this decade. The good news is that depression is treatable, both with medical therapy and “talk therapy”.

The following is part one of a five-part excerpt of the new book, Women’s Health for Life (DK 2009).  Women’s Health for Life is a unique compilation of women’s health information, designed to help women optimize their health, well-being, and quality of life.  Edited by women’s health expert and advocate, Dr. Donnica Moore, this book is team written by women physicians for women readers.  It discusses topics from contraception to infertility; migraines to menopause; cervical cancer to colon cancer; and heartburn to heart disease.  While many readers will want to read this book from start to finish, it provides easy access to specific information when it’s needed.  Uniquely, this book provides clear illustrations, graphs, and charts making it as easily understood as a cookbook. While, there is no single “recipe” for good health, the many ingredients are discussed in this book’s 16 chapters.  Organized by bodily system, each chapter starts out with an explanation of how that system works and ways to maintain healthy function through diet, exercise, and other self-help measures. This is followed by an explanation of some of the medical conditions affecting that particular system and how they should be treated, focusing specifically on recommendations for women.  To order Women’s Health for Life from amazon.com, click here

The following segment is taken from Chapter 2, “Understanding the Changes” which gives a decade-by-decade overview of the physiologic and psychologic changes women experience as we age.  It also serves to remind us of the common sense rules of health that many of us are liable to forget.  Much of that information is given in the section focusing on the 20′s, so don’t skip over this, even if you’re older!

The moment you are conceived, the stage is set for a life of individuality. The genes you inherit from your parents distinguish you from everybody else on the planet, unless you’re an identical twin! These genes contribute to who you are, what you look like, what your constitution is, and what diseases you may inherit.  At the same time, your changing environment-everything from your time as a developing fetus in your mother’s uterus and as a newborn infant in the cradle, to the hormonal merry-go-round of your adolescence-contributes not only to your health but also to the kind of illnesses from which you may suffer.  These two influences-your genes and your environment-make up the two components of the “nature versus nurture” discussion. Together, they determine the essence of your mental and physical well-being. This is also the melting pot from which psychologists draw the biophysical/social model to explain the workings of mental health.  But while we know that genes and environment are extremely important, both can be influenced tremendously-both positively or negatively-by the crucial lifestyle choices that we make.

Women differ from men in many ways but one of the most distinctive is the way we age. Women go through unique stages in life and experience particular changes, not only based upon our reproductive and hormonal status but also the kind of health problems associated with the various decades of our lives. On average, women in the US live six years longer than men. Yet, as time goes by, we also tend to suffer from more chronic illnesses and take more medication.

Usually, when you read or hear the term “the change” in conjunction with women’s health, you think about menopause. Yet there are many other age-related transitions that women experience, such as reaching the “magic age” of 35.  These changes are not always dictated by age per se, but by when-or if-you choose to start a family. As this chapter shows, these transitions are also linked to the development of any acute or chronic medical problems you may have. These problems may affect your risk of developing other illnesses in the future, your need for additional preventive measures, or your need for further diagnostic or health screening surveillance checkups.

Prevention is better than cure Age inevitably causes a physical decline and your risk of developing certain disease, such as cancer, heart disease, and osteoporosis, increases. Using a decade-by-decade approach, this chapter looks at the typical changes in women’s bodies as we age, the health risk factors associated with each decade, and our changing nutritional needs. However, not all diseases have risks that depend on age, so the chapter offers many tips and tests for prevention and for taking care of your health. Recommended checkups and screening tests begin in your 20s and should continue throughout your life. If the list of what you need appears to mount from your 30s onward, don’t be dismayed! These are just precautions. You may feel healthy now, but many medical conditions can be prevented or treated more effectively if they are caught early. These issues are discussed further in this chapter along with tips of good health habits (which will be discussed in our next excerpt) and re are suggested questions to ask your doctor as you start each decade.

Whatever your age and whatever your circumstances, the best way to minimize any health risks and prevent many problems from developing is to adopt healthy habits. And remember two things: first, even taking small steps toward improving your health is better than doing nothing at all; and second, it’s never too late to start improving your health.

Children and teens with CFS have many of the same issues as other children with chronic illnesses, confounded by the fact that they have an illness which is poorly understood, often misunderstood, and too often misdiagnosed. And what do we tend to do when we don’t understand an illness? We tend to deny it, ignore it, and accuse the sufferer of malingering. My son Brian once said that “I wish I had an illness like cancer or diabetes instead that people could easily understand and that I wouldn’t have to constantly explain”.

We also have to remember that kids have a full-time job: school. This is not just where they are working on their education, but where most of their opportunities for social interaction and even extra-curricular activities occur. School-age kids need to socialize; school is usually the foundation for those social interactions. Children and teens with CFS can easily become isolated, especially if they have prolonged periods of school absence and if their friendships are based around group activities such as sports. It was important to us to let all of Brian’s friends (and their parents) know that Brian’s illness was not contagious, that he welcomed visitors, and we had an open-door policy for parents who needed a place for their kids to come hang out. To facilitate this, I made sure to serve the best snacks in town (even when Brian had no appetite).

While students with CFS may qualify for special services under the Individuals with Disabilities Education Act (IDEA) and/or Section 504 of the Rehabilitation Act, it is often difficult to obtain these services, especially if the exacerbations of the illness are inconsistent. In most cases, parents must go through the process of obtaining an Individual Educational Plan (IEP) for affected children and the school must provide reasonable accommodations including home tutoring if necessary. This process takes time and persistence. And even once a plan is in place, it may be difficult to schedule home tutoring for a child with unpredictable sleep needs and energy cycles as well as numerous doctors’ and physical therapy appointments.

The issues of how difficult this process is for the parents goes way beyond the scope of space I have for this entry! Suffice it to say that caring for a child with a chronic illness affects the entire family: emotionally, financially, and in every other possible way. If both parents are employed outside the home, flexible child-care arrangements must be made, in addition to home-schooling arrangements. This, alone, can be a tremendous hurdle.

Long before we completed the IEP process, we did a few things that were very helpful for my son throughout the course of his illness. First, when he couldn’t even read, we instituted what I called “The Tivo Curriculum”. While parenting groups and even the American Academy of Pediatrics have strongly criticized the fact that most children watch too much television, we embraced it as an extremely valuable educational tool. Using Tivo, I could enter keywords related to Brian’s academic subjects (e.g. “Ancient Greece” or “evolution”) and get lists of appropriate television programs on those topics. We also tivo’ed general education science shows such as “Myth Busters” and “Beyond Tomorrow”. Using the theory that “laughter is the best medicine”, we used the tivo curriculum to combat Brian’s eventual depression as well, taping all sorts of comedy shows (e.g. “Whose Line is It Anyway?”), funny movies, and stand-up comedians.

While we had professional home tutoring when needed, we relied most heavily on a high school student tutor. Having an older boy come to the house to work with him was easier than a “real” teacher and gave Brian some sense of social interaction as well. This was also much more cost effective (and he was a brilliant student)!

In addition to keeping as up-to-date as possible with homework and other assignments, we asked all of Brian’s teachers to send home any videos that they thought would be helpful in supplementing their curricula. Obviously, this was much more helpful in some subjects than others, but we did discover a video teaching series from The Teaching Company (www.teach12.com) which even helped with algebra and physics. We found that the best way to homeschool algebra (which I have long forgotten!) was to enroll Brian in an online distance learning course run by the Johns Hopkins Center for Talented Youth (http://cty.jhu.edu/cde/index.html); it was fortunate that Brian had already qualified for this program prior to his illness.

These were some of the strategies that worked for us. Managing Brian’s illness—and teaching Brian to adjust to a new “normal” in his life—continues to be an ongoing learning experience for our entire family. We had many advisers along the way, but no specific written plan or instructions. I hope that my writing this will help other families as they struggle to help their children and teens manage CFS or other chronic illnesses. . .and I’m always open to hearing other success strategies!

For more information about CFS, go to www.cfids.org or www.njcfsa.org.

In this ongoing five-blog series about managing CFS in children and teens, I regret that the treatment section will be the shortest! While CFS research is being done on many fronts, much about this disease remains elusive. Even the most promising treatments have only been marginally effective for a relatively small percent of patients. The good news is that many children and teens with CFS show gradual improvement over time. However, a relapsing and remitting pattern–triggered by over-exertion, infectious illnesses, or seasonal changes–is more common. Even “recovered” patients find that they need more rest than their peers.

The mainstay of CFS treatment focuses on managing limited energy reserves; eliminating unnecessary or excessively stressful activities; getting adequate rest, nutrition and hydration; and treating symptoms. Many patients benefit from lifestyle and nutritional counseling, sleep studies or medication, support groups, and cognitive behavioral therapy (CBT). A closely supervised, mild, graduated exercise program with caution to increase exercise by no more than 1 minute per day is often helpful.

As parents, we find that viewing Brian’s health as a chemistry experiment is sometimes helpful: if we maintain homeostasis with respect to all the variables, he does fine. However, if any one of those variables changes—including those that are not in our control or his (such as changes in the weather or a new infection)—it can trigger a CFS “relapse” or exacerbation.

While there is no specific FDA-approved medication to treat CFS, several medications have helped patients with CFS: medications to facilitate sleep, to treat headache, to increase blood pressure, to treat digestive problems, to manage pain, and to increase appetite. Fluid and salt-loading may help patients with associated postural hypotension. Antidepressants have helped both to treat secondary depression as well as to facilitate sleep and decrease pain. When administering any medications to kids and teens with CFS, special attention must be given to the fact that most prescription medicines have not been specifically tested on children with CFS and the fact that most patients with CFS are sensitive to much smaller doses of medicines that other people their size or age.

With Brian, we tried just about everything. What worked? A medicine to increase his appetite (Periactin); an older medicine to treat headaches whose side-effects were sleepiness and weight gain (Doxepin); an antidepressant (Lexapro) and supportive therapy. We also gave him a daily multivitamin, Life’s DHA (a DHA supplement), probiotics (for his GI symptoms), and melatonin for sleep (0.5 mg). During a time when he couldn’t tolerate milk products, we also gave him calcium supplements.

Among alternative therapies, yoga, tai chi, acupuncture, massage, and biofeedback therapies have been reported to be helpful, as may be a new device, KFH Energy, FDA approved to alleviate fatigue and pain. This hand-held device uses a form of micro current electrotherapy called Bio-Electric Stimulation Therapy (BEST).

Brian tried KFH Energy, which may have helped more if he was more willing to use it daily. Unfortunately, we didn’t know about this therapy until 3 years into his illness. When Brian was most incapacitated, we started him playing ping pong sitting in a chair. Now he has become a fairly advanced table tennis player. When he got a little stronger, we got him a punching bag, both to take out his frustrations and to get a little exercise. Video games were the mainstay of his entertainment; we also used “Dance, Dance Revolution” successfully as a part of his physical therapy. When he became strong enough, he was able to undergo regular physical therapy 2-3 times per week. This was extremely helpful in regaining his strength, flexibility, and muscle tone after months of being completely sedentary. Mild swimming and water play were also helpful.

For more information about CFS, go to www.cfids.org or www.njcfsa.org.

As we have discussed previously, there is no diagnostic test for CFS. The diagnosis is a clinical one: the patient’s symptoms must meet the case definition criteria (See “Do I have CFS” box below) and all other medical possibilities must be ruled out. As a result, the diagnosis is often missed. Any doctor can make the diagnosis, regardless of their specialty. However, because many physicians have a low level of awareness of CFS, patients often consult several physicians over several years before getting an accurate diagnosis. There are a small number of self-designated CFS specialists in the US who can be identified from referrals or internet searches.

If there are scientists or researchers reading this, at the top of my wish-list–after wishing for my son’s sudden and miraculous recovery—is my wish for a blood test to diagnose CFS based on biomarkers. Why? It is my belief that until a blood test specific for CFS markers is developed, we will not be able to fully identify patients who are “really” affected by CFS. Until we can identify those patients with certainty, we will not be able to conduct focused clinical trials on potential medical therapies to treat these patients.

Dr. Donnica’s Decisionnaire ™: Do I—or Does My Child–Have CFS?

The diagnosis of CFS is based upon having four or more of the following symptoms in addition to the first one (which is required for the diagnosis), and having no other medical problems to explain these symptoms. There is no “test” for CFS. You may be at increased risk if an immediate family member has had CFS or fibromyalgia, but 80% of people with CFS have no known family history.

___I have had new, unexplained, persistent, or relapsing physical and mental fatigue for at least six months (If under 18, make this three months).

___My fatigue is not the result of ongoing exertion.

___My fatigue is not relieved by appropriate rest.

___I have at least four of the following symptoms:

___Weakness and exhaustion, lasting more than 24 hours, following mental or physical activity (“post exertional malaise”)

___Unrefreshing sleep, insomnia, day/night reversals, or excessive daytime sleepiness

___Substantial impairment of short-term memory or concentration, “brain fog”, problems with my short-term memory, confusion, disorientation, difficulty finding the right words or numbers, difficulty concentrating

___Widespread or migratory muscle pain

___Pain in the joints, without swelling or redness

___Headaches of a new type, pattern or severity

___Tender armpit and/or neck lymph nodes

___Persistent or frequent sore throat

___In addition, I have the following symptoms which may be CFS related:

___I have unexplained abdominal or chest pain

___I have difficulty concentrating,

___I have problems maintaining my balance

___I have hypersensitivity to light (photophobia) or noise

___I have hypersensitivity to emotional overload

___I have dizziness, palpitations, urinary frequency, or shortness of breath

___I have been told by a doctor that I have orthostatic intolerance, neurally mediated hypotension, or postural orthostatic tachycardia

___I have irritable bowel syndrome

___I have low body temperature, intolerance to heat or cold, often feel feverish, often feel like I have chills, inappropriate sweating, abnormal appetite

___I have new sensitivities to foods, medications or chemicals

For more information about CFS, go to www.cfids.org or www.njcfsa.org.

Today I’ll discuss the symptoms of CFS and why this diagnosis is so confusing. Ironically, part of the confusion about CFS comes from its name. The focus on fatigue tends to overshadow the numerous other systemic symptoms associated with CFS. Other names include: Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Myalgic Encephalomyelitis or Myalgic Encephalopathy (ME; the most commonly used term outside the United States), and Chronic Epstein Barr Virus Syndrome (CEBV). My son Brian, afflicted with CFS for nearly 4 years, has said that the acronym CFS is fine, but “it should stand for crippling fatigue syndrome.”

The fatigue of CFS is very different from the everyday “I’m tired” complaint that sleep-deprived, middle-aged women juggling multiple roles, stressors, and activities may feel. . .or that teenagers who have stayed up way too late online complain of the next morning. Classically and characteristically, it is fatigue that does not result immediately from exertion, is not relieved by rest or sleep, and it results in a significant reduction in previous activity levels. Often, it is brought on by physical exertion in the previous 24 hours; this is called “post exertional fatigue”. This is a difficult concept for most people to understand. When Brian is having a “good day”, for example, he might be able to play soccer for 30 minutes and look like one of the guys. But for the next 24–72 hours he’ll pay a price: usually an exacerbation of many of his other CFS symptoms as well as an overwhelming fatigue.

Other classic symptoms CFS include muscle pain (which may be related to fibromyalgia), “brain fog,” sore throat, headaches, dizziness, poor balance, impaired memory and concentration, headaches, cold/heat intolerance, food or chemical sensitivities, and unexplained general malaise. While the number of hours spent sleeping is often significantly prolonged, it is frustratingly unrefreshing.

One of the most confusing things about CFS for those who don’t live with it (in themselves or in a loved one) is that people with CFS “look fine” when their symptoms are not exacerbated. How can someone look well when they have such a serious illness? How can they feel fine one minute and then seem to run out of energy the next? The best way I can explain this is by using the example of a brand-new car. You can drive that car all day and it will look great. But, if you run out of gas, the car will suddenly not go any further. It will still look fine, but it won’t run. If the battery is working, all of the electrical functions will also work fine: the car just won’t go. Similarly, in people with CFS–whether they’re adults, children or teens—once they run out of energy, they can’t go. Fortunately, with the car, we can replace the gas. With proper maintenance and regular refilling, the car should run just fine. In people with CFS, however, we haven’t found a treatment which can replace “the gas”. All that these patients have at their disposal are attempts at regular maintenance: limited activities; frequent rests or naps; strict sleep schedules;, proper nutrition and hydration; vitamin supplements; mild, graduated exercise programs (when well enough); and taking measures to avoid infections, which can often trigger a relapse.

Because the cause of CFS is unknown, it is difficult to classify. We do know what CFS is NOT, however: it is not a psychiatric disorder or a manifestation of depression, even though many patients with CFS become depressed as a result of having a chronic, difficult to manage illness with no end in sight. We also know that CFS is NOT an ongoing infection and it is NOT contagious. The latest research suggests that CFS may have a genetic predisposition which may be triggered by any viral or bacterial illness, head trauma or unknown environmental causes.

CFS can affect people of any age, race, or socioeconomic group. It most commonly affects women 20–50; women are affected about four times more commonly than men. In teens and children, males and females are equally affected. We do not have good data about how many teens and children there are who may be affected with CFS. Like adults, however, we suspect that 85% of patients may not have been properly diagnosed.

There is also a wide range of presentation of CFS cases: some patients may be bedridden; others can work or attend school at least part time, but any physical exertion may worsen their symptoms. US women’s world cup soccer champion Michelle Akers was the most well known exception: she managed to play elite soccer only with constant medical attention and frequent intravenous infusions, often at half-time during a game! Unfortunately, many CFS sufferers are denied adequate care or disability insurance benefits because doctors, teachers, and employers fail to take this condition seriously.

For more information about CFS, go to www.cfids.org or www.njcfsa.org.

Once derided as “the yuppie flu”, Chronic Fatigue Syndrome (CFS) is now recognized as a serious, often disabling, chronic illness which may affect anywhere from 800,000 to 2.2 million Americans. I thought I was very progressive as a physician and a women’s health advocate because I began speaking and writing about CFS more than 10 years ago, when many physicians still believed this was one of those “it’s all in your head” diagnoses. But even I had no idea that CFS could affect children until my son Brian was diagnosed with CFS at the age of 11.5. As a doctor, I had access to consulting the top pediatric experts in the country (including Dr. Greene): as a mom or as a doctor, you know you’re in trouble when all the experts agree with a “bad news” or controversial diagnosis.

It turned out that 11.5 is the average age of CFS in children. It also turned out that making the diagnosis in Brian wasn’t controversial at all. He had a “classic” presentation: like 90% of young people with CFS, he was 100% well until the day he developed a flu-like illness. This was the same illness that his younger sister and I also developed at the same time (dad was vaccinated for the flu that year; we weren’t). Until the day he got sick, he was a top student and an accomplished 3-sport athlete. While my daughter and I got better within 7 to 10 days, Brian never recuperated. At first we thought he might have mono; then we thought he might have everything! He lost 10% of his body weight in the first 2 weeks; had no appetite or sense of thirst, severe headaches and photophobia (extremely light-sensitive), severely sore throat, severely impaired memory, “brain fog”, difficulty concentrating, difficulty reading, word blockages, short-term memory loss, difficulty getting out of bed or lifting a water bottle, numerous sleep disturbances, severe dizziness and difficulty holding his head up, impaired balance, shortness of breath and difficulty breathing; had the sense of fevers and chills without fevers; and he developed new sensitivities to foods. It turned out he had every symptom on the list except joint pain.

One of the challenges with CFS is that it is what’s called a “diagnosis of exclusion”: this means that since there’s no specific blood or radiologic test to “prove” that the diagnosis is CFS, all the other possibilities have to be ruled out first. This meant numerous blood tests, clinical exams, and even an MRI of the brain to make sure he didn’t have a brain tumor. Once all of those steps were taken, we were left with the clinical diagnosis of CFS. This comes from a list of symptoms of CFS, which is similar in adults and children, but with enough small differences that there is now a separate “Pediatric Case Definition” (see http://www.njcfsa.org/). The biggest difference is that adults must have prolonged, unexplained and persistent or relapsing exhaustion which persists for six months. In children or teens, this overwhelming fatigue has to last for 3 months.

In Brian’s case, the overwhelming symptoms lasted for more than a year. He missed the last 6 weeks of 6th grade and most of 7th grade, during which time he was predominantly home-bound and home-schooled. Now, nearly 4 years since his diagnosis, he has fallen into a relapsing and remitting pattern of CFS. He missed 8-10 weeks of school in 8th and 9th grades, but so far, in 10th grade, has perfect attendance, our new baseline measure of “wellness” in our home.

In the upcoming blog entries this week, I’ll discuss the symptoms of CFS in more detail, including a check-list to see if you or your child might have the symptoms of CFS (“Dr. Donnica’s Decisionnaire” ™); some of the challenges to diagnosing and managing CFS; the treatment of CFS, and finally, the education of children and teens with CFS. For more information about CFS, go to www.cfids.org or www.njcfsa.org.