Tag Archives: chronic fatigue syndrome

Rich Manhattan moms hire handicapped tour guides so kids can cut lines at Disney World

  • By TARA PALMERI
  • Last Updated: 7:14 PM, May 14, 2013
  • Posted: 2:45 AM, May 14, 2013

They are 1 percenters who are 100 percent despicable.

Some wealthy Manhattan moms have figured out a way to cut the long lines at Disney World — by hiring disabled people to pose as family members so they and their kids can jump to the front, The Post has learned. Continue reading

FDA Approves First Opioid for Diabetic Peripheral Neuropathy

The U.S. Food and Drug Administration has approved the use of the first opioid painkiller for the treatment of neuropathic pain caused by diabetic peripheral neuropathy. Nucynta, which is made by Janssen Pharmaceuticals, is already approved for management of moderate to severe chronic pain in adults.

The expanded approval from the FDA allows Janssen, a division of Johnson & Johnson (NYSE: JNJ), to market Nucynta for pain relief to nearly 8 million Americans who have diabetic peripheral neuropathy (DPN). The expanded use comes at a time when the FDA is being petitioned by some physicians and public health officials toreduce the approved uses of opioids, not expand them. Continue reading

Family Updates for those who care

It’s now early February, Patricia just came home to our house, although she could have used an other week or two in a rehab, no one was paying. Maybe it’s just our nervousness and she is ok. I don’t know, she has a halo on her head, a feeding tube hanging out of her stomach and a patch over one eye… Looks fine to me. Continue reading

FDA slaps Eli Lilly for ‘false or misleading claims’ in ads for Cymbalta

INDIANAPOLIS, Indiana — The U.S. Food and Drug Administration has slapped drugmaker Eli Lilly & Co. on the wrist for making “false or misleading claims” in advertisements for Cymbalta, a drug for pain and anxiety relief.

Specifically, the FDA cited Lilly for omitting and minimizing risk information about the drug, and overstating the drug’s efficacy, according to a copy of an undated letter the FDA sent to the drugmaker.

The FDA instructed Lilly to stop disseminating the ads in question and send it a letter by Jan. 22 saying whether the company intends to follow the FDA’s orders. A Lilly spokesman didn’t immediately return a call.

In one print ad that featured a woman curled up on a couch seemingly holding her knee in pain, Lilly failed to communicate risk information in the main part of the ad, the FDA said. Potential adverse reactions to the drug include nausea, headache, dry mouth, insomnia, constipation, fatigue, diarrhea, decreased appetite, dizziness and somnolence.

Another ad, which appeared in the WebMD Little Blue Book of Rheumatology, “misleadingly minimizes the serious risks” associated with the drug. The same ad overstates the efficacy of the drug in treating fibromyalgia, a condition marked by chronic pain of the muscles, tendons and joints, by implying that over half of fibromyalgia patients treated with Cymbalta will achieve a 30 percent improvement in pain. No data exists to support that claim, the FDA said.

In addition to the enforcement letter on Cymbalta, the FDA sent out similar letters to three other drugmakers: Cephalon for its lymphoma treatment Treanda; Bayer for birth-control implant Mirena; and Amylin Pharmaceuticals for diabetes drug Byetta, the Boston Globe reported. Lilly partners with Amylin on Byetta.

Diet & Nutritional Supplement Recommendations from Leading Fibromyalgia & Chronic Fatigue Syndrome Physicians

We’ve all heard the expression “you are what you eat.” While there is no question that diet and nutrition have a significant impact on overall good health, the extent to which this is true in people suffering from disease is a subject of much debate and has been the topic of many research studies.

When you’re struggling with a chronic illness such as fibromyalgia (FM) or Chronic Fatigue Syndrome (CFS), this expression takes on a whole new meaning and weight. While there is no diet or nutritional regimen that has been proven to eliminate all of the symptoms of FM or CFS, there are nutritional strategies that involve changing what you eat – and the way you eat, that help a great many patients feel better, resolve some symptoms, and function at a much higher level.
The dietary and nutritional supplementation advice that follows is provided by respected CFS and FM physicians and experts. While dietary and nutritional changes must be experimented with and tailored to each individual patient according to particular symptoms and deficiencies, the recommendations that follow broadly address the spectrum of nutritional issues that CFS and FM experts regularly encounter with patients, and describe the best solutions they have found.
Charles Lapp, M.D., is nationally recognized and sought after as a medical consultant regarding CFS and FM. He is Co-Chairman of the Clinical Affairs Committee for the American Association for CFS, medical advisor to the CFIDS Association of America, and a board member of the American FM Syndrome Association. Dr. Lapp is currently Director of the Hunter-Hopkins Center, P.A., Medical Consultations, in Charlotte, North Carolina, where he is a practicing physician, and is also Assistant Consulting Professor at Duke University Medical Center in Durham, North Carolina. For more information about Dr. Lapp, visit his Web site at http://www.drlapp.net/main.htm.

Diet (foods to eliminate, excitotoxins, etc.): There is very little study of this aspect, but empirically my patients do best on a low fat diet with lots of fresh fruits and vegetables, complex carbs (like rice and potato), and light meats (chicken, turkey, scaly fishes). We have also found that PWCs do not tolerate several items: sugar, caffeine, alcohol, tobacco, and excitotoxins like MSG and aspartame (Nutrasweet, Equal). Saccharin (Sweet N’ Low) is satisfactory, however. These are remembered by the mnemonic SCATE. Many patients with loose stools may find that reducing dairy and gluten (wheat, barley, oats and rye) intake may help.

Supplementation (how to address any nutritional deficiencies): The literature confirms several deficiencies in Chronic Fatigue Syndrome and fibromyalgia, including intracellular magnesium and vitamin B-12, whole body potassium, intracellular ATP, glutathione, taurine, serine, and the short-chain fatty acids such as valine, leucine, and isoleucine. While patients may not feel any better by supplementing these, health can at least be optimized. I frequently recommend supplementation with a multivitamin (like Super Multiple II or Cellular Support), magnesium, potassium, NADH (for ATP), glutathione, and an amino acid capsule.

Derek Enlander, M.D., is originally from Belfast, Ireland, and is Physician-in-Waiting to the British Royal Family and to several members of the British government during their visits to New York. He is presently in private practice in New York where he sees CFS and FM patients, is on the faculty of Mt. Sinai Medical Center in New York City and serves as President of the Israel Medical Research Foundation. Dr. Enlander has also written and published “The CFS Handbook” which is available through his Web site, http://enlandercom.mycoolinternet.net/. Diet (foods to eliminate, excitotoxins, etc.): Many patients do indeed appear to help themselves by eliminating certain foods. Patients seem to come to these foods and substances by either allergy testing or sample diet reactions.

There are many books that can be used as a self-help method to follow. I like for patients to maintain a healthy balanced diet low in animal fat and high in fiber with abundant fresh fruits and vegetables. The treatment that I use to help in this area is a product called Immunoprop. I believe it helps patients in better nutrition for the body, as well as addressing other symptoms.

Supplementation (how to address any deficiencies): The formula injection that I use in treatment provides many amino acids along with minerals and vitamins. With testing results, I may also include additional substances such as potassium, calcium, etc. I find that pills often are not absorbed well, so I prefer to use the injection for better absorption. I am not opposed to discussing other substances that might be of particular help. However, I want patients to recognize that supplements and herbal medicines have many potential side effects and toxic reactions as standard drug therapy. In fact, the dangers increase due to the lack of standards, doses and quality for ingredients.
Vitamin E has been recommended in low doses to enhance the fatty acids in the cell membrane, and promote cell function.

Daniel J. Clauw, M.D., is Professor of Medicine, Division of Rheumatology, Director, Chronic Pain and Fatigue Research Center, and Interim Director of the Center for the Advancement of Clinical Research at The University of Michigan. Dr. Clauw has been involved in the clinical care of, and research into, overlapping conditions such as fibromyalgia, Chronic Fatigue Syndrome, Gulf War Illnesses, and multiple chemical sensitivity, and is widely recognized as a leading authority on these illnesses. Diet: I don’t think there is any diet than can be recommended except a sensible, healthy diet.

Supplementation (how to address any deficiencies): There are a few supplements that may be helpful for FM such as magnesium supplements, or SAM-e, but patients should understand that these are drugs when taken in this way. I am always somewhat amused when a patient comes in to me taking eight different nutritional supplements, and says that he/she doesn’t want to take any drugs. A drug is anything that is ingested to change the body’s physiology – nutritional supplements are drugs.

Mark J. Pellegrino, M.D., is Board Certified in Physical Medicine and Rehabilitation and Electrodiagnostic Medicine, and is one of the nation’s leading experts on fibromyalgia. Dr. Pellegrino is the author of numerous books and articles on FM, and despite having FM himself, he maintains an active medical practice in North Canton, Ohio where he has cared for thousands of FM patients. I often recommend a diet that is higher in protein and lower in carbohydrates to help fibromyalgia. A variety of nutritional supplements can also be used to help the symptoms of fibromyalgia. Magnesium with malic acid, 5-HTP, colostrum and others can be beneficial. Many people who are too sensitive to prescribed medicines may better tolerate nutritional supplements.

The research supports that those with fibromyalgia have low or below normal levels of magnesium, thyroid, growth hormone, B-12 levels and serotonin, among others. If low or below normal deficiencies are identified, I recommend specific supplementation. For fatigue, I often recommend supplements that include magnesium and malic acid, colostrum, and NADH, among others. I also recommend specific dietary strategies for fatigue, namely a diet higher in protein and lower in carbohydrates (as I recommend for fibromyalgia).

Garth Nicolson, Ph.D., is President, Chief Scientific Officer and a Research Professor at the Institute for Molecular Medicine in Huntington Beach, California. He is engaged in research on the role of chronic infections in a variety of illness, including Chronic Fatigue Syndrome, fibromyalgia, Rheumatoid Arthritis, Gulf War Syndrome, and various autoimmune diseases. For more information about Dr. Nicolson, visit his Web site, http://www.immed.org. At the core of Garth Nicolson, Ph.D.’s approach to CFS and FM are his findings on chronic infections in these disorders. Dr. Nicolson has found through his research studies that the majority of CFS and FM patients have chronic viral and bacterial infections. Infective agents receiving particular attention from Nicolson are mycoplasmas, which he describes as “bacterial microorganisms lacking cell walls that are capable of invading several types of organs, tissues and cells.” In his investigations, Dr. Nicolson has found that two-thirds of his patients with CFS or FM test positive for mycoplasmal infections in their blood.

Dr. Nicolson does not necessarily believe mycoplasmas are the initial cause of CFS or FM. Rather, he feels that possibly exposures to chemical toxins, acute viral illnesses or trauma of some sort can open the door for these infections. Once in the door, Dr. Nicolson explains that mycoplasmas become “stealth” invaders because “they can avoid immune surveillance and penetrate and hide in various tissues and organs.” The results of this invasion are immune suppression, allowing further viral attack and promoting chronic inflammation with associated symptoms of chronic fatigue, muscle weakness and pain.

Diet
Dr. Nicolson recommends a controlled diet, two-thirds of which is composed of vegetables, one-sixth starch and one-sixth protein. The vegetables should be green, orange, and yellow and the majority of vegetables eaten should be cooked. The starch should be whole grain and include complex carbohydrates. The protein can include chicken, fish, beans and lean, well-cooked meats. While some fruit is okay, a large concern of Dr. Nicolson is keeping dietary sugars low. Thus, fruit lower in sugar content is better and fruit juices are discouraged. On the other hand, vegetable juices, herbal teas and plenty of water are beneficial to keep the body cleansed.

Dr. Nicolson’s concern about sugar is based upon sugar’s promotion of mycoplasmas and other harmful microorganisms. For this reason, as much as possible food and drink containing sugars should be eliminated from the diet. Refined, fatty, and yeast containing foods are also good to avoid. Likewise tobacco, alcohol, and caffeine would not be included in a diet most helpful for CFS.

Supplements
Dr. Nicolson encourages the use of supplements to strengthen patients’ immune systems and to improve overall health. B complex vitamins in easily assimilated forms, such as sublingual, are important. Vitamins C, E, CoQ10, amino acids, and minerals such as zinc, magnesium and calcium should be taken. Dr. Nicolson also recommends fish, flaxseed oils and mixtures of friendly bacteria including lactobacillus acidophilus. Especially beneficial for a strong immune system are bioactive whey products, lemon/olive drinks, olive leaf extract, fresh garlic, oregano oil and mushroom extracts.

Dale Guyer, M.D., is the Medical Director of the Advanced Medical Center in Indianapolis, Indiana. The Advanced Medical Center is a multidisciplinary treatment facility which emphasizes a holistic basis. The center utilizes the collective expertise of an oriental medicine doctor, a naturopathic physician, and is currently in the process of creating a unique spa like environment and personalized training exercise facility to effectively help individual patients navigate an optimal health experience by incorporating the best avenues of mind, body, and spirit. Dr. Guyer’s Web site is http://www.daleguyermd.com.

I think the digestive – and for that matter the detoxification system, are often the crux or obstacles that get in the way of significant healing, and of course when someone does not digest and absorb effectively, their cellular nutrient profiles are going to be inherently deficient. Therefore, first I like to approach the symptoms with natural therapy such as enteric-coated peppermint oil for bowel spasms, which can be used on an as-needed basis. Secondly, most people need to supplement with digestive enzymes and tailor to the dosing amount that improves overall function and reduces irritable bowel complaints. In addition, some people will need to take small amounts of hydrochloric acid as their own stomach hydrochloric acid output is diminished. Also, most patients have alterations of the intestinal ecology and will need supplementation of probiotic bacteria, and sometimes, initially at least, many patients will need a broad array of different types of probiotics, and so often times for the first several weeks I will have patients take 3 or 4 different brands which provide different spectrums of biologically active probiotic bacteria. Also, there will often tend to be yeast overgrowth, especially in those who have ever been on any kind of antibiotic therapy. It is often beneficial to do a comprehensive digestive stool analysis (Great Smokies Diagnostic Laboratory performs such analyses). If yeast organisms are noted on the comprehensive digestive stool analysis, a sensitivity analysis can be completed that will show what antifungal medicine or natural compound the organisms are sensitive to. Some people will often require multiple antifungal drugs. One of my favorite regimens, at least from the natural options, is oregano oil. This always seems to offer improvement in most patients.

Where I find that approach incomplete, I will usually use combinations of Diflucan and Nystatin, and if that is ineffective, I add Amphotericin. This needs to be prepared by a compounding pharmacy and often several weeks of therapy will be required. It is also important when using systemic antifungal agents such as Diflucan to be sure to periodically check on liver function, although I must say in the hundreds of patients I have treated, I have never seen any problems or complications with these specific medical regimens. However, in our patients, we also support liver detoxification with products including milk thistle extract and phosphatidylcholine.

Michael E. Rosenbaum, M.D., is a pioneer in Nutritional Medicine with 25 years experience in alternative healthcare, specializing in the treatment of Chronic Fatigue Syndrome, fibromyalgia, Myofascial Pain, endocrine and metabolic disorders, and allergies. He is currently in private medical practice in Corte Madera, California. A menu of medications, nutrients and herbs help the treatment of sleep, low energy, pain, and depression for CFS and FM patients. The following nutrients and alternative approaches have worked best in my practice: Energy: B Complex vitamins, especially vitamins B-1 and B-12; NADH – a stabilized form of vitamin B-3, and Coenzyme Q10. These vitamins all participate in the formation of ATP energy packets. For muscle energy, creatine, carnitine and branched chain amino acids are often very useful.

Cognitive function: I strive to raise brain acetylcholine (a neurotransmitter) with tyrosine, N-acetyl carnitine and DMAE which I find helpful; stabilizing brain cell membrane functions with phosphatidyl serine is also beneficial.

Anxiety: Magnesium, and relaxant herbs are helpful.

Depression: I recommend amino acid neurotransmitter precursors phenylalanine, tyrosine and tryptophan or 5-HTP. The prominent methylating agent SAM-e is an especially potent mood enhancer which I believe is also useful in helping to reverse chronic nerve damage.

Sleep: It is important to preserve stage 4 deep or ‘slow wave sleep.’ Stage 4 sleep is interrupted by benzodiazepines like lorazepam that are frequently used by CFS patients. Tricyclic antidepressants like Elavil and Sinequan are also excellent sleep inducers and enhance stage 4 sleep, but can impair dreaming during REM sleep and cause weight gain. Sonata does not disrupt any of the sleep stages and is particularly useful with middle of the night awakening due to its rapid disappearance from the blood stream. I have found that a combination of calcium 600 to 800 mg and magnesium 300 to 500 mg taken before bedtime has a relaxant effect that is very useful for sound sleep and to prevent restless legs. Melatonin and serotonin inducers like tryptophan and 5-HTP are also very useful. However, too much tryptophan can cause bizarre and unpleasant dreams. GABA, which occupies GABA receptors, helps allay anxiety and induces sleep. Typical dosages are 500 to 1500 mg.

Muscle pain: MSM at high doses of 8 to 12 grams a day is useful. DLPA (phenylalanine, an essential amino acid formed from protein) at doses of one to three grams a day increases endorphins.

Joint aches: I recommend all antioxidants which are anti-inflammatory. Fish oil supplements – especially those with a high EPA content (an excellent source of Omega-3 fatty acids), are also anti-inflammatory and therefore can be helpful for aching joints.

Paul Cheney, M.D., Ph.D., is one of the most recognized names in CFIDS (Chronic Fatigue Immune Deficiency Syndrome) treatment and research. He has treated over 3,000 patients with CFIDS from 48 states and 15 countries. Dr. Cheney has published numerous articles in peer reviewed medical journals, and has lectured around the world. He was a founding Director of the American Association of Chronic Fatigue Syndrome (AACFS), a professional association of scientists and clinicians. Dr. Cheney’s Web site is http://www.fnmedcenter.com/ccis/.
Basic Diet Recommendations No sugar: Due to defects in utilization, it produces toxins that cause pain, headaches and neuropsychiatric problems. Sugar stimulates the growth of abnormal gut microflora, especially Candida (yeast). It generates a tremendous amount of free radicals and raises insulin levels, both of which are very problematic for patients. If you crave it, try eating carbohydrates instead. If you must, eat sugar (including fruit) with meals, never by itself. Some honey and powdered fructose can be used in cooking, as well as the herbal sweetener stevia.

Reduce “bad” fat: limit daily intake to less than 30 grams due to a defect in fat transport across mitochondrial membranes that is seen in patients. Supplementation, however, of essential fats (EFA’s omega-3 and omega-6) is necessary.

No Nutrasweet: this artificial sugar substitute contains the toxin methanol and can exacerbate neurotoxicity.
No red meat: high in the bad kind of fat and difficult to digest, it causes gastrointestinal (GI) tract symptoms and systemic symptoms such as joint pain.
No caffeine: or at least limit your intake as much as possible. Be careful with the following: eliminate them entirely or try two separate three-week programs of off/on/off these foods, and note if symptoms improve in the off week.
Dairy products (can cause GI and systemic symptoms);
Gluten (can cause GI and systemic symptoms) which is found in wheat and oats, and thus in cereal, bread and pasta. Gluten-free products are available.

Paul St. Amand, M.D., Assistant Clinical Professor of Endocrinology at Harbor-UCLA (for the past 45 years), believes guaifenesin therapy can significantly help fibromyalgia patients combat their symptoms and lead normal, healthy lives. Dr. St. Amand is also in private medical practice in Marina del Rey, California, and is the co-author of “What Your Doctor May Not Tell You About Fibromyalgia.” Dr. Paul St. Amand’s theory of the medicinal effects of guaifenesin for FM is based on the premise that excess calcium and inorganic phosphate compounds accumulate within cells to produce a state of hyperpermeability. This condition allows excess fluids, ions and other unwanted substances to flow into cell mitochondria, disrupting normal cell function, including production of ATP, the body’s energy source.
Dr. St. Amand believes these factors cause the body to experience an energy-deprived state, in which widespread bodily functions are disrupted. Dr. St. Amand also feels a possible genetic defect in FM patients may be responsible for the abnormality in natural phosphate excretion, thus resulting in the buildup of these chemicals and subsequent symptoms.

What is Guaifenesin?
Guaifenesin is a common component of many cold and cough remedies that helps loosen and liquefy mucous. It is a safe medication that may even be used by children. Derived from a tree bark extract called guaiacum, it was first used to treat rheumatism during the 16th century. Twenty years ago, the extract was synthesized, pressed into tablets and named guaifenesin. Today, there are many formulations of guaifenesin available, the most popular being extended release tablets that deliver both immediate and long lasting effects.

The St. Amand Guaifenesin Protocol
Guaifenesin is regarded by Dr. St. Amand as the most potent drug to date for treating FM. In Dr. St. Amand’s guaifenesin protocol, a physician maps the location, size and degree of hardness of swellings or lesions within muscles, tendons and ligaments all across the body. The map serves as a baseline for future comparisons during guaifenesin treatment. Patients also make note of variations in the amount of pain and fatigue they experience, and the combined input is used to determine the proper guaifenesin dosage and to confirm the regression of the disease. The initial goal of guaifenesin treatment is to exacerbate the patient’s symptoms.
Dr. St. Amand stresses that the worsening of FM symptoms, or the appearance of new symptoms indicates that disease reversal has begun. Dosage generally begins with 300mg (one-half tablet) of time released guaifenesin twice daily for one week. If symptoms have not worsened, the dosage is increased to 600mg twice daily. As treatment continues and the reversal process progresses, periods of less intense symptoms appear. As time passes, these periods cluster into days and weeks and lesions begin to clear. He has also reported a 60% increase in phosphate excretion and a 30% increase in oxalate in patients’ urine, indicating that the offending compounds are effectively being removed from the body.

Salicylates
An important part of Dr. St. Amand’s protocol focuses on the avoidance of salicylates. In nature, salicylates are manufactured by plants as a defense against bacteria and fungi. Aspirin and other herbal or plant based products contain salicylates or salicylic acid. Any product containing salicylates can completely block the benefits of guaifenesin. The human body easily absorbs salicylates through the skin and intestines, so patients taking guaifenesin must be wary of medicines, supplements, lotions, cosmetics and even garden plants which can neutralize guaifenesin treatment.

Harris McIlwain, M.D., C.M.D. is a rheumatologist, geriatric medical specialist, and founder of the Tampa Medical Group in Florida, and has been in medical practice for twenty-five years. The Tampa Medical Group has four physicians who specialize in rheumatology and internal medicine. Dr. McIlwain and his colleagues see hundreds of patients each week, many suffering with fibromyalgia syndrome. The revised third edition of Dr. McIlwain’s popular book, “The Fibromyalgia Handbook: A 7-Step Program to Halt and Even Reverse Fibromyalgia” is now available (an Owl Book, published by Henry Holt and Company).

The following is an excerpt from this book. Follow the Nutritional Plan for HealingAlthough there are no specific “magic” foods that are proven to cure fibromyalgia, research has shown that there are some positive nutritional measures you can take to heal your body. Being at the proper weight and eating healthful foods, including those that are low in fat and high in immunity-boosting antioxidants and phytochemicals, work together to help maximize energy and alertness, while possibly minimizing the constant fatigue and lethargy that accompany this syndrome.
Maintaining health and feeling good becomes increasingly more complicated with chronic diseases like fibromyalgia. Good health is more about the precise balance of a sound body, mind, and spirit than just the absence of disease. There are unique links among the brain, the hormone system, and the immune system. Within this balance, these links make feeling our best a total experience – physical, mental and emotional.
Taking charge of the areas of your health that you can control helps to optimize how you feel even in the midst of the aches and fatigue of fibromyalgia. Taking Control of Your Disease Eating for wellness is one of the treatment areas that you do have control over. Knowing that you are doing all you can to eat healthily can give you a sense of power to sustain your physical needs and help you cope with the stresses of everyday life and fibromyalgia.
The food choices you make can affect your weight; obesity is a significant health problem in the United States as well as in other developed nations. Studies are now being conducted to see if obesity contributes to an impaired immune system.
Antioxidants Give Cell Protection Antioxidants are essential nutrients that help protect your body against life’s stressors. Antioxidant food sources are rich in beta carotene and vitamins C and E. Antioxidants are thought to play a role in the body’s cell-protection system and to interfere with aging and the disease process by neutralizing highly reactive and unstable molecules, called free radicals, produced by the body. In research, free radicals have been shown to disrupt and tear apart vital cell structures like cell membranes. Antioxidants have been shown to tie up these free radicals and take away their destructive power, perhaps reducing the risk of a number of chronic diseases and even slowing the aging process.
Eating for wellness requires a diet rich in antioxidants. Some researchers think that antioxidants might help prevent damage in some types of arthritis and boost immune function when a system is under stress. Both are important benefits for patients.
Understanding Antioxidant Food Sources Beta Carotene: Found in apricots, carrots, cantaloupe, pumpkin, spinach, broccoli, collard greens, tomatoes, papayas and peaches (among other sources), is converted to vitamin A in the body. Because of a great deal of media attention, most people think of only beta carotene as having antioxidant properties, but there are many other carotenoid compounds that do also, including: alpha-carotene (found in carrots, cantaloupe, and pumpkin), gamma-carotene (found in apricots and tomatoes), beta-cryptoxanthin (found in mangoes, nectarines, peaches, and tangerines), lycopene (found in tomatoes, guava, pink grapefruit, and watermelon), lutein and zeaxanthin (found in beets, corn, collard and mustard greens). Vitamin C (ascorbic acid) protects us against infection and aids in wound healing.
When the body is under great stress, the blood levels of ascorbic acid have been found to decline. This decline also occurs with age in both men and women. Vitamin C plays a vital role in boosting levels of the energizing brain chemical norepinephrine.
Norepinephrine produces a feeling of alertness and increases concentration. A deficiency of vitamin C can therefore influence your mood as well, leaving you less attentive. It is essential to include plenty of vitamin C sources in your diet (broccoli, oranges, cantaloupe, grapefruit, kiwi, peppers, potatoes, strawberries, tomatoes). Vitamin E is important to the body for the maintenance of cell membranes, and this vitamin’s antioxidant effect may slow age-related changes in the body.
There is now evidence that vitamin E plays a role in lowering the risk of coronary heart disease and heart attack. Adults with intestinal disorders of malabsorption may be deficient in vitamin E. Because this vitamin is taken in through vegetables and seed oils, it is difficult to ingest large amounts, especially if you are on a low-fat diet. If your diet is low in vitamin E food sources, check with your doctor to see if you should add 200 to 400 IU daily through supplementation. Food sources of vitamin E include nuts and seeds, vegetable oil, and wheat germ. Zinc to Resist Infection
Zinc also has antioxidant effects and is vital to the body’s resistance to infection and for tissue repair. Many illnesses, such as some cancers, kidney disease, long-term infection, trauma, and cirrhosis of the liver, are associated with zinc deficiency. Medications may also interfere with the absorption in the intestines and cause a zinc deficiency. More research infers that zinc can help to improve the immune system in elderly people. However, cautions must be raised as high doses of zinc are toxic and may, in fact, suppress immune function. Again, check with your physician for what is safe in your situation. Foods high in zinc include seafood, eggs, meats, whole grains, wheat germ, nuts and seeds; tea and coffee may hinder absorption.
Magnesium to Reduce Pain
Magnesium is vital for healthy muscle metabolism and function. Yet, when you have a magnesium deficiency, you may experience excessive muscle tension, muscle spasms, restlessness, tics, and twitches. Studies now indicate that magnesium is particularly important for those with fibromyalgia as it inhibits nerve receptors linked to the trigger point pain and regulates the release of neurohormones. In a comprehensive study published in the journal Alternative Medicine Alert (March 2002), researchers found that just 500 milligrams of oral magnesium taken daily can significantly increase muscle magnesium level and influence fibromyalgia symptoms. In another study published in the Cochrane Database of Systematic Reviews (2001), researchers found that magnesium supplementation can help to alleviate painful menstrual cramps, although they are unsure of the exact amount needed. Because magnesium supplementation can cause gastrointestinal symptoms, including watery diarrhea, talk to your doctor first before trying this therapy. Foods high in magnesium include cereals, nuts, sunflower seeds, barley, quinoa, tofu, dairy products, bananas, pineapples, artichokes, avocados, lima beans, spinach, okra, hummus, oysters, mackerel, grouper, cod and sole.
B Vitamins May Ease Your FM Symptoms There is strong indication that some foods high in the B vitamins help to alleviate some fibromyalgia symptoms. For instance, folic acid, a B vitamin, seems to be a leader in mood management [Editor’s note: fibromyalgia and Myofascial Pain Syndrome (MPS) researcher Devin Starlanyl has noted that folic acid is often in short supply in FM and MPS patients].
In research performed at Massachusetts General Hospital in Boston and the Baylor Research Institute in Dallas, studies conclude that people with low folic acid levels are more likely to have melancholia, a type of depression characterized by sadness and declines in mental and physical activity. The eight-week study of 213 patients also found that those with low levels of folic acid were significantly less likely to respond to treatment for depression with fluoxetine (Prozac), a common antidepressant medication used for fibromyalgia patients. Vitamin B-12 works closely with folic acid to make red blood cells and prevent anemia, memory loss, nerve damage, muscle weakness, and fatigue (if you are a vegetarian, getting ample vitamin B-12 is difficult, so talk to your doctor to see if supplementation is needed).
Food sources of folic acid include green leafy vegetables, asparagus, cantaloupe, spinach, lima beans, kidney beans, pinto beans, navy beans, tofu, sweet potatoes, citrus fruits, and peanuts. Food sources of vitamin B-12 include eggs, dairy products, and oysters. Choose Plant-Based Phytochemicals Nutrition research is now revealing that a variety of food choices can do more than provide optimal nutrient intake. A varied diet can also provide hundreds of nutrient and non-nutrient compounds that may be vital to protection from disease. These compounds found in plant-based foods as a group are referred to as phytochemicals.
Phytochemicals appear in all plants. A diet that includes a variety of grains, fruits, and vegetables should provide these substances if you vary your choices and methods of food preparation. Although there are phytochemical supplements and pills available, it is best to get your phytochemicals from a varied diet.
Other Immune Boosters A great concern for anyone with a chronic illness is avoiding other illnesses. For example, fibromyalgia can make you feel flu-like with the muscle aches and fatigue. So getting the flu on top of having fibromyalgia is like a double whammy. What about those who have fibromyalgia and also develop osteoporosis or heart disease? It doesn’t have to happen to you, and one way to protect yourself from viruses, infections, and other chronic illnesses is to keep your immune system boosted so it can adequately fight to keep you well.
Flavonoids (or bioflavonoids) include about 4,000 compounds that are responsible for the colors of fruits and flowers. Hosts of experiments on bioflavonoids found in the soft white skin of citrus fruits have suggested that these key nutrients increase immune system activation. These biochemically active substances accompany vitamin C in plants and act as an antioxidant. You can find bioflavonoids in grapefruit, oranges, lemons and limes. Rose hips, apricots, cherries, grapes, black currants, plums, blackberries, and papayas are other fruit sources of bioflavonoids. Green peppers, broccoli, eggplant, squash, and tomatoes are some good vegetable sources of bioflavonoids. Tea, red wine, and parsley are also good sources. Quercetin
This is a very highly concentrated form of bioflavonoids that is found in citrus fruits, red and yellow onions, and broccoli. Quercetin reduces inflammation associated with allergies. Other citrus flavonoids include hesperidin, which is said to raise blood levels of the “good” high-density lipoprotein (HDL fats) and lower the “bad” low-density lipoprotein (LDL fats) and triglycerides, and tangeritin, which induces apoptosis, or programmed cell death, in leukemia cells, but does not harm normal cells.
Glutathione
Another nutrient that has been found to strengthen the immune system so it can fight other infections is glutathione. This powerful antioxidant is most plentiful in the red, pulpy area of the watermelon near the rind. It can also be found in cruciferous vegetables.
Natural Dietary Supplements Dietary supplements include a host of products that contain vitamins, minerals, herbs and amino acids as well as natural enzymes, organ tissues, metabolites, extracts, or concentrates. Some alternative practitioners recommend the following natural remedies for prevention and treatment of disease.
Chromium picolate is a trace mineral important in helping cells break down sugar into energy for the body. Supplements can help to regulate blood sugar, fat, and carbohydrate metabolism. Uncontrolled blood sugar levels can contribute to weight gain, high cholesterol, and high blood pressure. Interestingly, chromium seems to normalize low blood sugar. A recent USDA study of 180 Type 2 diabetics in China documented “spectacular” results from taking 1,000 micrograms of chromium picolinate daily. For those with FMS, taking chromium may help in stabilizing mood swings and anxiety caused by fluctuation in blood sugar levels.
Coenzyme Q10 (CoQ10) is a natural substance that improves heart and immune function. It is also an antioxidant that helps to lower cholesterol levels and reduces oxidative damage to blood vessels. Essential Fatty Acids (EFAs) are not manufactured by the body, but these fats are essential to cardiovascular health and normal brain development. EFAs are available in oils containing omega-3 (fish oils) and omega-6 (linolenic and gamma-linolenic, or GLA, which are found in plant oils such as evening primrose, black currant, and borage). Glucosamine and Chondroitin are two substances that the human body produces to make cartilage. In supplement form, glucosamine comes from crab shells, and chondroitin comes from cow cartilage. Although scientific studies have yet to call them the “cure” for arthritis, in some studies of people with arthritis, these supplements were found to ease aches as well as over-the-counter painkillers, but more slowly.

Although their long-term safety has never been officially established, they appear to have no side effects, and researchers do not know whether you must take the two supplements together [for maximum benefits] or if one is effective taken all by itself. If you have osteoarthritis along with fibromyalgia, this natural solution might help you. Lecithin is commercially isolated from soybeans, corn, and eggs, and may help with easing the memory glitches that happen with aging. Just two tablespoons of lecithin a day stimulates the body’s output of choline, a brain chemical that is important to recall and memory.

Conclusion Now that you’ve read about the approaches some of the leading practitioners recommend to help FM and CFS patients feel better through diet and nutritional supplementation, talk to your healthcare provider or a qualified nutritionist familiar with FM and CFS about the changes you’d like to make in your own life. Will your most aggravating symptoms lessen or disappear altogether through changing your diet? You’ll never know until you try, but chances are, making simple changes to your diet and addressing your nutritional deficiencies will make you feel a whole lot better — and will make your body stronger to continue on the road to wellness. (c) 2003-2004 Pro Health, Inc., and www.ImmuneSupport.com. All rights reserved.

European Think Tank Forms to Generate Research Establishing ME/CFS as Organic Illness

by European Society for ME
June 8, 2009

“More than 5,000 research papers…show that ME has an organic basis…[yet] it has been close to impossible to initiate large-scale research to verify these facts and observations. We will never be able to treat ME properly if we do not initiate this type of research.” – Prof. Kenny De Meirleir

Ten leading scientists in Europe – members of the nonprofit European Society for ME (http://esme-eu.com) – have formed a Think Tank for ME and will hold their first meeting with a press conference Saturday, June 13 in Stavanger, Norway. (See Scientific Panel Member Listing, below.) They want to initiate an effective research effort to find the secret behind the mystery disease that cripples an increasing number of lives.

Myalgic Encephalomyelitis, often referred to as Chronic Fatigue Syndrome (CFS), is a disease which affects at least one million individuals in the US, and an even greater number in Europe. Despite the large number of people affected, there is a lack of serious large-scale research initiatives focused on the disease. The number of patients is rapidly increasing but healthcare personnel lack knowledge about existing research and possible treatments.

Last year’s winner of the Nobel Prize in Medicine, Professor Luc Montagnier of France, says, “Scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is still not taken seriously. It is about time this changes.” Montagnier, one of the discoverers of the HIV-virus, is a supporter of the Think Tank.

Treatable Disease
Ten internationally recognized scientists, many of them prominent leaders in their respective fields of research, have decided to do something about it. They have come together in a Think Tank to promote cooperation among scientists from various disciplines and to stimulate intense focus on innovative and creative research.

“There are more than 5,000 research papers which show that ME has an organic basis with abnormalities in the immune, nervous and gastrointestinal systems and that it is influenced by genetic and environmental factors,” states Professor Kenny De Meirleir of Belgium. “Despite these findings, it has been close to impossible to initiate large-scale research to verify these facts and observations. We will never be able to treat ME properly if we do not initiate this type of research.”

Using new biotechnological techniques, much of the underlying pathophysiology of the disease has been unmasked. Several treatable clinical entities have been discovered, but this information does not reach healthcare personnel. The result is that patients remain undiagnosed and untreated for years with something that might be fully treatable. This is a huge drain on the economy, as the estimated socio-economic costs for Europe are estimated to be €20 billion annually.

Educate Professionals
An important part of the Think Tank’s mission is to spread knowledge about the disease. The incidence of ME and the impact on public health are actually higher than that of other better researched conditions like Multiple Sclerosis and HIV. Research shows that ME can be a very disabling chronic disorder which often diminishes patients’ quality of life to levels lower than that of cancer, MS, HIV and lupus.

Professor Ola Didrik Saugstad of Norway states, “There is a total lack of knowledge and understanding about this disease in the healthcare system. We wish to use our knowledge to educate and train doctors, therapists and other healthcare personnel so they can better understand how to manage an ME-patient.”

New in ME
The Think Tank meetings are the brainchild of a new organization, European Society for ME (ESME). This society will focus on organizing research and educating professionals in the field of ME.

“Until now ME organizations have been patient-based and only focused on the needs of the patients, so this is something completely new and unique. We are a group of professionals who want to stimulate new research in the field of ME and to help doctors and healthcare personnel to stay informed about the latest developments in diagnosing and treating ME-patients,” says ESME board member Mrs. Catherine Miller-Duhen.

Think Tank Meeting – Saturday June 13; Press Conference 4 pm
The first Think Tank meeting will be held in Stavanger, Norway on June 13. This will be immediately followed by a press conference at 4 pm, where the specialists will be available for comments and interviews.

Press room, Clarion Hotel Stavanger, Stavanger, Norway.
To register for the press conference and ensure receipt of a press
packet, please send an email to Rebecca Hansen at: icerebel62@hotmail.com

Diagnosis & Treatment Training Conference – Friday June 12
On Friday June 12, a conference will be held to train healthcare personnel in the diagnosis and treatment of ME-patients. It will be open to patients and relatives as well.

SCIENTIFIC PANEL MEMBERS – ESME

Belgium: Prof. Dr. Med. Kenny De Meirleir (2009 Scientific Panel Chair)
Professor of Physiology, Pathophysiology & Medicine,
Internal Medicine & Cardiology, Free Univ. of Brussels.
Clinical expert in ME/CFS. Chair of Scientific Panel ESME 2009.

Denmark: Prof. Dr. Bodil Norrild
Professor of Molecular Virology, Univ. of Aarhus & Copenhagen.
Head of DNA-Tumorvirus Group, Institute of Cellular &
Molecular Medicine (ICMM),
Univ. of Copenhagen.

Germany: PD Dr. Liv Bode
Research Virologist, Robert Koch Institute, Berlin.
Specialist Human Borna virus infection.
Special expertise in development of immune assays & diagnostic tools.

Germany: Prof. Dr. Hanns Ludwig
Professor of Virology, Free Univ. of Berlin.
Specialist in Animal & Human Borna virus infections & Herpes viruses.

Hungary: Prof. Dr. Med. Maria J. Molnar
Professor of Neurology, Clinical scientist.
Established Center for Rare Neurological Disorders – Clinical and Research
Center for Molecular Neurology, Semmelweis University, Budapest.
Pioneered diagnostic techniques in Neuromuscular/Neurogenetic disorders.
Organizer of biological banking system. (NEPSYBANK)

Ireland: Dr. Med. Derek Enlander
Internist, ME/CFS clinician & researcher.
ME/CFS/FM specialist, Mt. Sinai Medical Center, New York, USA.
Author of The CFS Handbook.

Italy: Prof. Dr. Med. Umberto Tirelli
Specialist in Oncology, Hematology & Infectious Diseases.
Director Department of Medical Oncology, Director Division of Medical Oncology,
Chief of CFS Unit, National Cancer Institute, Aviano, Italy.

Norway: Prof. Dr. Med. Ola Didrik Saugstad
Professor of Pediatrics, Director of Department of Pediatric Research,
Rikshospitalet Medical Center, Univ. of Oslo.
World-renowned Neonatal Specialist, WHO Advisor.

Spain: Dr. Med. Ana Garcia Quintana
Internist/Surgeon. ME/CFS clinician & researcher, Unit for CFS,
Delphos Medical Center, Barcelona.
Committee Member of CFIDS, USA.

Prof. Dr. Med. Babill Stray-Pedersen, Norway (Patron, ESME launch meeting)
Professor in Obstetrics & Gynecology, Faculty of Medicine, Univ. of Oslo,
Senior Consultant Rikshospitalet, Oslo University Hospitals.
Executive board member of the European Society for Infectious Diseases in Obstetrics & Gynecology.
Medical advisor of Norwegian Women’s Public Health Association.
Advisory board member of Reproductive Health, WHO.
______
Source: European Society for ME news release June 3, 2009, e-mail post@esme-eu.com

Men with Fibro KEN’S STORY

This entry is part of a series, Men with Fibro»

Courtesy of Dominie Bush
I’m a 44 yr old firefighter who felt run down most of last year and was sleeping better than I ever had in my life but all I wanted to do was sleep. In February of this year, I had something like the flu in which I ached and had swollen throat and bad headache and neckache and went to my family doc who said I had all signs of viral meningitis but didn’t confirm with a lumbar puncture and he said since it was viral, it should go away in 3 days and did but left me with vertigo that continued to worsen to the point where I couldn’t do anything.

I went to a local ENT who put ear tubes in both ears and I immediately developed a chronic ear infection in both ears and went almost 2 weeks for daily suctioning of my ears that were never cultured to find out exactly what the germ was. I went to a world renowned ear clinic in Memphis, and was told the infection had spread to the mastoid bones in both sides and was givien a quinolone drug called Levaquin that I had a really bad reaction to. I was put in the hospital for the mastoiditis and given IV drugs and sent home and continued to worsen.

I had unbelievable anxiety and was almost completely out of it night and day for 3 months, and had neurological problems including tremors and weakness and fatigue and also lost almost 40 lbs. but I was never in any physical pain. I also had memory and brain process problems.
I was also given close to 5 weeks of IV rocephin for the mastoiditis and had a mastoidectomy and typanoplasty on side of head and ear and have lost hearing on that side.

About 4 weeks ago, my brain function and sleep began to get better, but I’ve developed extreme fatigue and aches and pains all over my body as if a bad case of flu multiplied 10x. I try to exercise but it’s as if my muscles won’t build up especially upper body arms.

I haven’t been diagnosed with CFS or fibro but have an appt. to see my neurologist, who doesn’t know what is wrong with me, Oct 6 to see and ask him if he thinks it could be either since I didn’t have pain when I last saw him. I haven’t been able to work since the end of April and want nothing more than to go back to work doing the job I love most, firefighting and your website has given me hope that I can get better.

I also forgot to mention that during the first 3 months when I was so bad, I didn’t sleep night or day even with a multitude of sleeping pills, all of which had the opposite effect of what they were suppose to. Before this illness, a Benedryl would put me out 10 hrs or more and now wires me. It’s as if my whole metabolism has changed and doesn’t work correctly. I am sleeping better but the fatigue and pain are almost unbearable at times.

Courtesy of Dominie Bush

Meeting the Challenges – Adjusting Thinking pg2

This entry is part of a series, Cambell meeting the challenges»

The last article discussed a number of ways to manage depression and worry. This article describes another technique for managing emotions: changing your thoughts.

The Connections Among Thoughts, Feelings and Actions

To understand the powerful effect that thoughts can have, imagine the reactions of two patients to an increase in symptoms following a short walk. One says: “Another setback! I’ll never get any better.” This person has a pessimistic way of interpreting experience. She sees specific events as examples of permanent, far-reaching negative forces. The thought “I’ll never get any better” tends to lead to frustration, depression and despair. The mood of despair is associated with learned helplessness, the sense of not having control and a belief that effort will not be effective.

Pessimistic thoughts can increase your suffering. Negative thoughts make you feel anxious, sad and hopeless, which in turn makes it difficult to act constructively. Worry and preoccupation with suffering may even intensify symptoms and trigger another round of negative thinking. The cycle can be very demoralizing and make it difficult to motivate yourself.

Being in a situation in which you seem to lack control can create a sense of helplessness. Modern psychology has coined the term learned helplessness to describe the lasting effects of an uncontrollable bad situation.

But just as feelings of pessimism and despair can be learned in response to experience, so can optimism. Imagine that the second patient responds to her increase in symptoms by saying: “I walked too far today.” She has a more optimistic way of seeing her experience. She sees an event as something specific, limited and temporary. Her thought is more hopeful. It suggests the person can learn from experience, that tomorrow need not be the same. The more optimistic mood is associated with the willingness and even eagerness to try again.

Negative thoughts can be quite common in chronic illness. Focusing on symptoms, for example, can lead to thoughts like “I’m always in pain.” Such thoughts lead to frustration and discouragement. An inner dialogue featuring the word “should” can also produce frustration and anger towards oneself. An examples is saying “I should be able to do more.” Self-esteem can be undermined by thoughts like “I’m useless.”

The Effect of Expectations on Emotions and Symptoms

A student in one of our early groups provided a good example of how thoughts can affect emotions and symptoms. At a birthday party one year, she took on the role of the good hostess, moving about and worrying whether everyone was having a good time. She found herself tired and cranky after an hour. For a similar party a year later, she decided to create a different expectation for herself. She imagined she was a queen who was observing the situation from a throne. Freed from her self-imposed expectation that she should make sure everyone enjoyed themselves, she found herself with good energy for more than two hours. By making a mental adjustment (changing her thoughts), she reduced her worry, extended her energy and reduced her symptoms.

In this article, we will explore how you can recognize and break the cycle in which negative thoughts and symptoms reinforce one another, so that you can use your thoughts to help you, rather than having them increase your suffering.

Recognizing Automatic Thoughts

The process of changing explanatory style from a pessimistic, helpless one to a more optimistic and hopeful one occurs in three steps. The first is learning to recognize one’s self-defeating thoughts. This is not easy to do because the thoughts are automatic and habitual, so deeply ingrained that they seem self-evident.

A technique for recognizing automatic thoughts is the Thought Record, which is described in the book Mind Over Mood by Dennis Greenberger and Christine Padesky. Using this form offers a way to become aware of your automatic thoughts and their effects on your mood and behavior. (You can find similar techniques in other books, such Learned Optimism by Martin Seligman, Feeling Good by David Burns or books by Albert Ellis.)

To see how this technique works, we’ll use an example of a patient who took a walk one day and felt very tired when she got home. Feeling discouraged, she asked herself what thoughts were going through her mind. The answer: “I’ll never get better. Every time I try something, it fails.” She wrote a description of the event in column 1 of the Thought Record. (See below.) In the second column, she recorded her emotions at the time, noting that she felt depressed and hopeless. And in the third, she wrote the thoughts going through her mind when the emotions were strongest: “I’ll never get better. Every time I try something, it fails.”

The purpose of this exercise is to help you gain some distance from your thoughts, to remove their taken-for-granted or self-evident character. Often we are more harsh and judgmental toward ourselves in our inner dialogue than we would be with others. Self-defeating thoughts often go through our minds when something upsetting occurs. Because these thoughts are automatic, they can be hard to recognize and it can take some time to develop this skill.

Evaluating Negative Thoughts

Once you have identified negative thoughts, the next step is to examine them for “reasonableness.” In evaluating your thoughts, ask yourself to what extent the thoughts are valid. Negative thoughts tend to ignore facts or to select only the worst aspects of a situation. One way to determine reasonableness is by asking “What is the evidence for and against my thoughts?” The idea is to suspend temporarily your belief that the thoughts are true, and instead look for both evidence that supports and evidence that refutes the thoughts. Writing down the evidence you find helps you gain distance from your thoughts and makes them less self-evident.

You use column 4 in the Thought Record for evidence for, and column 5 for evidence against. The patient in our example wrote in column 4 that she has frequent setbacks and that she had often felt worse after exercising. She wrote in column 5 that she had improved over the last year and knew that many CFIDS patients improve.

Your thoughts at moments of strong emotion may seem irrefutable, so it may help to have in mind some questions you can ask yourself in order to find evidence that does not support your thoughts.

Among them:

Do I know of situations in which the thought is not completely true all the time?

If someone else had this thought, what would I tell them?

When I felt this way in the past, what did I think that helped me feel better?

Five years from now, am I likely to view this situation differently?

Am I blaming myself for something not under my control?

Seeing Alternatives

In the first step, you identify your self-defeating thoughts by recording the thoughts associated with strong emotions. In the second step, you challenge the accuracy of the thoughts by testing them to find distortions and irrationalities. In the last step of the process, you propose a new understanding of your experience.

You use column 6 of the Thought Record for this purpose. What you write in column 6 should be either an alternative interpretation of your experience (if you refuted the thought) or a balanced thought that summarizes the valid points for and against (if the evidence was mixed). In either case, what you write should be consistent with the evidence you recorded in columns 4 and 5. Reviewing the evidence she had written in columns 4 and 5, our patient decided that the evidence was mixed. She wrote a balanced thought that combined the evidence for and the evidence against. “I have frequent relapses and don’t know if I will have lasting improvement. But I’ve made progress and that gives me hope.”

The Goal: More Realistic Thinking

The process described here involves changing deeply ingrained habits of thought. The long-term results can be dramatic, but improvement is gradual. The reason to use thought records is not to replace negative thoughts with positive but inaccurate ones. I am not suggesting you adopt something like the motto “every day, in every way, I am getting better and better.” Rather, the goal is to learn to see your situation in an accurate, yet hopeful way: retraining your habits of thought in a more realistic direction. The kind of thinking advocated here integrates all evidence both positive and negative. It should reduce your stress by helping you feel better, less anxious and sad. And, at the same time, it should help you to deal more effectively with your illness.

Developing a Partnership with Your Doctor

This entry is part of a series, Campbell self management»

By Bruce Campbell

Chronic illness calls for a different relationship between patient and physician than is usually the case in acute illnesses. Because your condition is an ongoing one in which you are the day-to-day manager, the patient/physician relationship is more appropriately a partnership. Continue reading

Bruce Campbell: Self-Management (Four Parts/Steps)

This entry is part of a series, Campbell self management»

Living Well with Long-Term Illness: The Role of Self-Management

By Bruce Campbell

When you first developed CFIDS or fibromyalgia, you may have thought you had a lingering short-term illness. But at some point you realized rather than resuming your previous life after a brief interruption, you were faced with the prospect of adjusting to a different and more limited life.

As long-term illnesses, CFIDS and fibromyalgia require that you adopt a different role as a patient, one we call being a self-manager. With short-term illnesses, you often can rely on a doctor to provide a solution. But CFIDS and fibromyalgia are different. Doctors have limited powers, because there are no medical cures for either illness and medications often have limited effectiveness. With long-term conditions, more responsibility falls on the shoulders of patients, as day-to-day managers of their illness. You know your situation better than anyone else, because you live with it on a day to day basis. You may seek help from experts, such as doctors, but, in the end, you are responsible. Your decisions and lifestyle will go a long way to determining your quality of life with long-term illness.

Acceptance and Hope

As a self-manager of a long-term illness, your success will depend on the attitude you have and the skills you develop. The patients we have known who have done well have all had a realistic, yet positive attitude that combined two apparently contradictory ideas: acceptance and hope. Acceptance means that they acknowledged that they had a long-term condition that imposed limits and required that they adapt. They did not try to ignore their illness, nor did they expect it to disappear. They recognized that they had to adjust to ongoing symptoms and limitations. But neither were they resigned. They had a determination to improve and a confidence that they could find ways to feel better, even if they were not able to restore their old life. (For some examples, see Dean Anderson’s account of his experience with CFIDS and other articles in our Success Stories series.)

We share their view, believing that it is realistic to think that CFIDS and fibromyalgia patients can find things to help them feel better. Medications and self-help strategies may not cure CFIDS or fibromyalgia, but they can help reduce pain and discomfort, bring greater stability, and lessen psychological suffering. We call this approach realistic hope. Even if you aren’t able to restore your old life or to live the life you had expected, you can adapt to the limits imposed by your illness and find meaning by living the best life possible under the circumstances.

Dr. Charles Lapp made the same point when he wrote in the foreword to our course textbook that the patients he has known who have done well “all share a positive attitude and willingness to adapt. They take control of their own lives.”

Developing New Skills

As a manager of a long-term condition, you also face the challenge of developing new skills and habits that will promote a better quality of life.

One skill is learning about your illness: understanding your symptoms, the treatment options available to you, and your sources of support. Sources of information about your illness include your doctor, libraries and bookstores, the Internet, patient organizations such as the CFIDS Association of America and the Arthritis Foundation. Perhaps your most valuable source of information is you. You live with your condition on a day-to-day basis and know it intimately. Through self-observation and simple record keeping you can learn a lot about your body’s needs, what helps you and what hurts you.

Another skill is seeking help from professionals. Since the relationships you develop with doctors and other health care providers are crucial, it is important to find people you trust and feel comfortable with, and for you to take an active role in your care.

A third aspect of self-management is experimentation. Because everyone is different and no single medication has been found to be widely helpful, patients must experiment to find what works for them. What helps one person may be ineffective for another; a treatment that is effective for a while may become ineffective. We call this process of experimentation being your own CFIDS or fibromyalgia scientist. You are both a researcher and your own research subject, as you try various approaches to find what works for you. We recommend that you change just one thing at a time and that you keep written records of your experiments. Usually only a few minutes a day are needed. For more on logging, including samples logs, see Chapter 7 in our textbook.

A final skill useful for self-managers is problem solving. Because your illness and other parts of your life are constantly changing, you are faced with the necessity to adapt. Taking a problem-solving approach can enable you respond to respond effectively to your always-changing situation. We suggest you use a three-step process that is described in detail in Chapter 2 in our textbook. The keys are to consider a variety of possible strategies and to recognize that a solution may require a combination of several approaches.

Five Challenges of Long-Term Illness

Self-management is appropriate for long-term illness for a second reason. Not only does long-term illness bring symptoms that persist; it has comprehensive effects, changing how much you can do, your moods, your relationships, your finances, your hopes and dreams for the future and your very sense of who you are. Living with long-term illness means much more than managing symptoms. Controlling symptoms is just one of many challenges you face as a CFIDS or fibromyalgia patient. Here’s how to apply self-management to five of the biggest challenges of long-term illness.

Managing Symptoms: CFIDS and fibromyalgia usually have multiple symptoms and often each symptom has more than one cause. An experimental approach utilizing a variety of strategies is usually the most effective response. Many patients address symptoms such as pain and poor sleep by using medications, both over the counter and prescription. Experimentation is usually required to find medications that are effective and to discover appropriate dosages.

Making changes in your daily habits and routines, which we call lifestyle adjustments, can also be helpful. The most effective for most people is pacing. Many patients experience repeated cycles of push and crash: fighting against the limits imposed by illness, then collapsing in order to recover. Pacing offers a way to bring stability by adapting your activity level to your limits. (For more, see the chapters on Treatment Options for Fatigue, Pain and Sleep and Pacing in our course textbook or the series of articles titled “Treating CFIDS and Fibromyalgia.”)

Controlling Stress: Stress can be a challenge for anyone, but it can be doubly difficult for people with CFIDS or fibromyalgia. Being chronically ill adds new stressors to those you were already confronting, things like the discomfort of symptoms, isolation, financial pressure, strains on relationships and uncertainty about the future. Complicating your challenge, CFIDS and fibromyalgia are very stress-sensitive illnesses. They seem reset our “stress thermostat” so that the effects of a given level of stress are greater than they would be for a healthy person.

Learning ways to control stress have big effects on both symptoms and quality of life. People in our classes often report that they use several forms of stress reduction, such as deep breathing, meditation, relaxation tapes and massage, in combination with stress avoidance strategies such as having a regular routine and avoiding stressful situations. (For more, see the chapter on Stress Management in our course textbook or the article “Key 7: Manage Stress” in the series “Ten Keys to Successful Coping.”)

Getting Support: Serious illnesses like CFIDS and fibromyalgia create great strains in families and test other relationships as well. The unpredictability of symptoms and of emotions make daily life difficult for everyone. Family members and friends may take on new, additional responsibilities while suffering losses themselves. At the same time, patients often feel isolated both physically and psychologically.

Given limited energy, patients often have to set priorities for their relationships. We call this relationship triage: making explicit decisions about whom to include in your support network, concentrating on the more valuable or necessary relationships and letting others go. Creating relationships with fellow patients can be a powerful antidote to the isolation of long-term illness and the frustration of not feeling understood. (For more, see the chapter on “Improving Support” in our textbook or the article “Key 8: Seek Support and Understanding.”)

Managing Emotions: Strong emotions like fear, anger, grief and depression are common reactions to having chronic illness. Such emotions are a normal and understandable response to being in a situation in which life is disrupted and routine is replaced with uncertainty. Unfortunately, CFIDS and fibromyalgia seem to make emotional reactions even stronger than before and harder to control.

Self-help strategies, sometimes in combination with medications, can help manage the emotional aspects of chronic disease. For example, the chapter in our textbook on emotions lists twelve actions to take in response to depression and eight strategies for anxiety. (For more, see the chapter on “Managing Feelings” in our textbook or the article “Key 9: Honor Your Emotions.”)

Adjusting to Loss: Chronic illness brings with it loss and the accompanying emotion, grief. While grief is usually associated with the death of a loved one, it can occur after any loss and chronic illness brings great losses to most patients. Loss presents you with a double challenge: to grieve the absence of the person you used to be and to create a new life.

While a few patients recover and return to their former lives, most end up making an accommodation to illness like that described by CFS patient JoWynn Johns: “Gradually, I came to accept the idea that perhaps I never could go back to my old life. I began to let go of my goal of recovery as I had understood it, and to replace it with the idea of restoring quality of life through building a different kind of life than the one I had known before CFS.” (For more, see JoWynn’s article “What Recovery Means to Me,” or the chapter titled Beyond Loss in our textbook.)

Conclusion

Chronic illnesses like CFIDS and fibromyalgia require long-term adjustments and have comprehensive effects on patients’ lives. An effective response is self-management, which means taking an active role in managing your condition. By learning new attitudes and skills, you can respond effectively to the challenges of illnesses that don’t go away