CALIFORNIA CAPITAL CFIDS ASSOCIATION
NEWSLETTER
Volume 15, Issue 3    August 2001

CCCA News and Information
Chronic
Fatigue Syndrome (CFS),
Myalgic
Encephalomyelitis (MB)
& Chronic Epstein-Barr Virus (CEBV)
P.O. BOX 660362
SACRAMENTO, CA  95866
916/484-3788

UPCOMING CCCA MEETINGS

Sat. September 8, 1-3 PM Janna Winnim, Therapeutic Touch for CFS and FMS -
screen CFS documentary "Living Hell

Wed. October 3, 6-7 PM "Newcomer/Share Meeting

Sat. November 10, 1-3 PM Screen video of Dr. Cheney presentation

Wed. December 5, 6-7 PM "Newcomer/Share Meeting

Sat. Jan 12, 2002, 1-3 PM Speaker TBA

Newcomer/Share Meetings are held at:
    Lyon Real Estate 1st floor Board Room at
    Lyon Village, 2580 Fair Oaks Blvd. Sacramento.

Group Meetings are held at: 
    MedClinic, 3rd fl. conference room
    3160 Folsom Blvd. (at Alhambra), Sacramento.

NEXT SPEAKER MEETING - SEPTEMBER 8

Janna Winnim, RN will talk about using Therapeutic Touch as a treatment for chronic pain and other symptoms of CFS and FM. Janna is a RN who has been helping people recover from illness and injury for over 15 years. She specializes in Therapeutic Touch, CranioSacral Therapy and Flower Essences, as well as her "regular" nursing specialties. She primarily works with people who suffer from severe pain or serious illness, and the terminally ill to "ease their suffering and facilitate their journey."

From her brochure: "Therapeutic Touch (TT) is a form of healing touch that is used to relieve pain and speed healing. TI was developed for nurses by Dolores Krieger, a professor at New York University, and Dora Kuntz, a natural healer. II is sometimes referred to as "energy work" because the focus is the human energy field, also known as the aura. When one is healthy, the energy of the human field is freely flowing and balanced. In contrast, disease and injury are conditions of energy imbalance and disorder. Using the hands as sensors and instruments for healing, the II practitioner attunes to the client's energy field to locate areas of imbalance; any blockages are then removed to restore the orderly flow of energy. Clients can be sitting or reclining during TI treatment, and it is not necessary to remove clothing.... Believing in IT is not necessary. Skeptics can experience dramatic results in pain relief and healing. One client writes "The relief I experienced [from back pain] was phenomenal."

Therapeutic touch was recently written about in the CFIDS Chronicle as a good alternative for CFIDS and FM sufferers. The article in the Winter 2001 CFIDS Chronicle talks about how holistic, integrative approaches to treating CFIDS and FM usually include some form of bodywork. "Yet even the moderate levels of pressure used in some types of traditional bodywork, such as massage or shiatsu, can be agonizingly painful to many people with CFIDS or FM. For these individuals, therapeutic touch may be a good option.... IT employs light physical contact just above a patient's skin....

Therapeutic Touch is not a New Age or fringe therapy, but a well established and scientifically backed health intervention developed in the nursing profession and taught for more than two decades in many nursing education programs. In fact, most TT practitioners are nurses, though anyone can become certified. Studies show that TT treatments can boost a person's immune response, relieve pain, hasten the healing of infectious diseases and reduce the healing time for wound and bone fractures.... The NIH's Office of Alternative Medicine found that TT has one of the strongest research bases of any of the alternative! complementary therapies.

Come to the meeting on Sept 8th to see, hear, and experience the wonders of this type of treatment. Janna is a busy therapist and is glad to take some time to come and talk to us and to work on anyone who wishes to be treated at the meeting with a mini-session.

If there is time, we will also have available the documentary-style video titled "Living Hell," made by a PWC to show some of the effects of living with CFS. Many in our group were involved in finding interview sources for this film and the results have won awards in film circles.

Disclaimer

The California Capital CFIDS Association, Inc., is a non-profit group for persons who have been diagnosed as having CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) and/or related disorders, and their family members and friends. Our purpose is to provide support, information, coping strategies, and resources for the patients and families. We recognize that each patient needs to be under the care of his/her own physician, and urge each to seek medical advice on any modality of treatment from his/her own physician. The opinions expressed by authors or speakers are their own, and the group does not take responsibility for or insure the accuracy of any expressed opinions.

NOVEMBER MEETING - DR. CHENEY PRESENTATION

For the November meeting, we will have available a presentation by Dr. Cheney on his findings about CFS after years of research and treating thousands of patients, some of who travel extensively to be treated by him. He also discusses his treatments, strategies, and beliefs.

THANK$

A big THANK YOU goes out to all of you who have recently renewed your memberships, it helps to keep us motivated to do the jobs we have tackled to keep this group running. A second big THANK YOU goes to all of you who were able to add a donation above the basics.

current $10 dollar fee - every penny is needed and used for the group's small costs. In breaking down the costs for this group, we may soon have to increase the price back to $15 dollars per year if we want to put out the newsletter five times a year as we have been doing. We have been gifted with very good prices from the printer for our group, but that and postage for the newsletter are still the largest costs. It is hard to put it out less often, as there is so much information available. It is very hard to select what goes in each newsletter from the reams of good information that is now available on CFS. I hope most of you are able to get information from other sources as well. The volunteers who keep the telephone lines, web site, newsletter, and meetings going are invaluable. We all thank you, members, for your words of thanks and support as we all work together to support each other though this difficult illness. Blessings on you all, and hope to see you at the meetings whenever you can attend. - JW.

THE CARING CENTER

There is a place in town to experience wonderful healing for free. It is a concept that began with a Caring Center in Memphis about five years ago and is spreading throughout the country. We now have three Caring Centers operating in the greater Sacramento area, and more are being formed soon. The concept is simple - therapists and coordinators volunteer their time to give sessions free of charge to anyone who comes for one. The therapists may include Reiki, Chi Gung, Bowen and/or massage therapists, among others. Each evening it may be a different mix depending on who is donating their time at that meeting. These groups meet once a week at a donated space, and all who come are worked on for as long as 15 to 20 minutes. All Caring Centers run from 7pm to about 9pm. Please call the listed coordinators for directions and for any other questions. They ask that you arrive at 7pm to sign up. (If you have a modality to volunteer, call and ask, they'd love to have you, too!)

This would be a good way to experience some of the "alternative treatments we read about in the literature to see if they are helpful to you. One of our members told us about the Caring Centers. She found the free treatments helped a great deal with her energy levels and with minimizing pain, and with helping her to sleep more soundly afterwards.

One Caring Center is held Monday evenings near 65th and Hwy 50, at 2810 Redding Aye, in the Le Magasin Warehouse. The coordinator is Kristin Carpio, (916) 689-8458. The Caring Center Folsom meets Wed. evenings at Mercy Hospital, 1650 Creekside Dr. in Folsom (follow signs from lobby). The coordinator is Marsha Carlile, RN, (916) 984-7231. The Caring Center Sacramento is currently seeking a new space and will begin again as soon as possible on Tuesday evenings. The coordinator is Shari Brown, (916) 927-6978.

NEW FIBROMYALGIA ADVOCACY GROUP

Would you be interested in joining in an ongoing legislative advocacy group?

A dozen of the group members lobbied on May 10. They visited the offices of seven legislators and met with their staff people who specialize in health care issues. Several recommended that the group discuss and frame their issues and see if some of these might be addressed through legislation. They would help the advocated write the bills (prospective laws). Then the advocates would follow the bills through committees, arguing for them, and seeing if they could be passed. The staffers also suggested that some of the issues would be more appropriately taken to the California Medical Assn. Those who lobbied on May 10 had a great time, are very enthusiastic about continuing, and others also want to join.

The group has some expertise. One person in the group currently works at the legislature. Another worked there for 5 years. The coordinator of the group has been lobbying as a sort of apprentice for two years here and in D.C. with the Arthritis Foundation, the Congress of California Seniors, and currently as the lobbyist for the National Fibromyalgia Awareness Campaign--all of course as a non-paid volunteer. 
Contact: Tom Swift  916-453-8707  E-mail: tswift@mindsync.com.

NEW ADDRESSES FOR CCCA ON THE WEB

Please be sure to visit the CCCA web site at our new web address - http://ottem.org/ccca - for links to CFIDS related websites. Please feel free to email us at CalCapitalCFIDS@bigfoot.com with any questions, comments, suggestions, or interesting link information. A source of additional information on the web is The CFIDS Association of America, Inc. at http://www.cfids.org. Note: Is it time to renew? Your membership expiration date can be found on the mailing label after your name!

Treatment Research

TREATING FIBROMYALGIA WITH GUAIFENESIN

by R. Paul St. Amand. MD.

Paul St. Amand M.D. is a graduate of Tufts University School of Medicine. He has been on the teaching staff at the Los Angeles Harbor/UCLA Hospital Department of Endocrinology for over forty-three years. He is currently an assistant clinical professor at the UCLA School of Medicine. Dr. St. Amand discovered guaifenesin's use as a treatment for Fibromyalgia. and his work is cited wherever the substance is mentioned.

Fibromyalgia -- (once called "Fibrositis ) was first described in 1843 as a type of rheumatism "with painful hard places." Today, Fibromyalgia is accepted as a distinct illness. Patients present with fatigue, insomnia, non-restorative sleep and generalized pain.

Over thirty-seven years ago, a patient taking gout medication found he could easily break tartar off his teeth with his fingernail. Dental calculus is a calcium phosphate deposit in the form we recognize as "apatite." It seemed probable a serum derived abnormality existed in saliva that allowed such deposition. Total body calcium and phosphate might attain excessive, critical levels. Cellular accumulation would interfere with energy formation and cause malfunction of susceptible systems. This would explain not only tenderness, palpable swelling and spasm but also the generalized complaints. We began using "gout drugs for patients with the above symptoms and findings. We stress, uric acid and gout have no relationship to Fibromyalgia. To be effective, a medication must act on nearly the same area of the kidney that malfunctions in most cases of gout. Allopurinol, which blocks formation of uric acid does not affect renal excretion and is useless for Fibromyalgia. We feel an inherited defect permits some type of excessive, kidney retention that leads to an abnormality in the metabolism of phosphate and calcium.

We now rarely use the two gout medications, probenecid (BenemidTM) and sulfinpyrazone (AnturanelM) for Fibromyalgia. Another medication, guaifenesin, is normally prescribed to loosen mucus (mucolytic effect) in patients with chronic sinusitis, bronchitis and various lung diseases. It has proven the most effective drug for Fibromyalgia to date. Unlike the previous drugs, it only weakly increases excretion of uric acid and would be useless for gout. It has no listed side-effects though we have learned of nausea, heartburn, itching or rash in rare instances. We usually begin with one half tablet (300 mg.) twice a day for one week, an adequate dosage for twenty percent of individuals. If needed, we increase to 600 mg. (full tablet) twice daily according to changes we and patients note. For about 70 percent, one of these two dosages suffices. Obviously, 30 percent will need larger amounts. Adjustment is made as suggested by our subsequent mapping.

Observations suggest a primary defect in phosphate, not calcium metabolism. Calcium with or without magnesium tablets taken with meals has allowed lower dosages of medication possibly because they bind phosphates from food, increase fecal excretion and thereby lessen absorption. Some patients have fingernail changes that suggest an abnormal calcium phosphate deposition at the root. Similar to concentric tree rings, they grow and eventually break or peel at the tip. Primarily phosphate, some calcium and oxalate, increased in the urine as we initiated treatment in the few patients we tested. Our hypothesis is that an inherited, abnormal renal retention of phosphate and secondarily, calcium, leads to an intracellular excess of both. Cells and their power stations, the mitochondria, malfunction and produce inadequate ATP, the currency of energy. An energy deprivation syndrome develops and affects susceptible, widespread, bodily functions. We realize this is simplistic and the chemistry far more involved.

Treatment with guaifenesin requires more than a mere prescription. A detailed history is necessary to ascertain the duration of the illness and to permit prognostication regarding speed of reversal. Simple palpation finds most of the lesions. They should be recorded on body maps for location, hardness, shape, and size. Patients are asked to keep at least a mental note of their symptoms with attention to pain and emotional swings. Mappings are repeated as treatment progresses and are used to monitor affected regions for change and ultimate disappearance. Our mutual input readily identifies the dosage and discerns improvement. Guaifenesin can be taken at any age and has been in use for many years for its previous indications. Treatment reverses Fibromyalgia in less time than it took to develop. This accelerated process reproduces previous pain and emotional symptoms, sometimes intensely. Some time after proper, individual dosage has been attained "good days" appear and eventually cluster. Similar to a bouncing ball, symptoms gradually lessen, lesions soften, break-up and clear. Two months of adequate treatment reverses at least one year of accumulated disease. Thus, the longer the duration of illness, the longer to total clearing. Tissue damage from scarring or X-ray abnormalities are permanent and will not reverse. However, pain even in the same locations, may not be due to such changes.

Aspirin completely blocks the benefit of all medications we have used, including guaifenesin. The greatest source of patient error comes from taking aspirin-related agents, saucy- late or salicylic acid, which interfere with guaifenesin at the kidney level. Skin readily absorbs these compounds. Almost all plants manufacture salicylates, often in large quantities. Parts from leaves, roots and seeds concentrate salicylate in herbal medicines. Patients can neither take these nor use any skin creams that contain plant products. This includes products such as nasal sprays or suppositories. Our warnings do not apply to foods, cooking herbs and spices though they do harbor salicylates. The content is insufficient to block benefits if cumulative, extraneous sources are not added.

This is deliberately repetitious because it is important. We cannot detect how easily or completely one's genetic make-up allows blocking. Assume you are very sensitive. Be meticulous in conducting your search of current or replacement products. Manufacturers make sudden changes and often list only "active" ingredients. If you must use the product contact the manufacturer to learn of "inactive" ones, which might include aloe, mentholatum etc.

Many pain medications contain aspirin or have "salicylate" or "salicylic acid" as part of their contents. You cannot use these. Tylenol, Advil, Darvocet-N and anti-inflammatory drugs are acceptable.

Heed the warning: all plants make salicylates. "Natural" refers to something made in nature. Poison ivy, oleander and hemlock are all natural but that does not make them safe. You must avoid products with that word including such things as aloe, ginseng, menthol, mentholatum, almond, grape seed oils etc. in creams, lotions and herbal medications.

Castor oil and camphor have recently appeared in many lotions, lipsticks and underarm deodorants-they are high in salicylates.

Ingredients with plant names butchers' broom, rosemary, geranium, St. John's Wort must be avoided. Oils made from plant parts must not be applied to the skin.

Avoid Vitamin E derived from Rose Hips and vitamins from "natural" sources such as vitamin C with bioflavinoids, which may contain quercetin, a source of salicylates.

Avoid all lip balms with the exception of plain Vaseline. Tubes of this product are available. All creams and lotions for muscle and rheumatic pains such as Ben Gay contain salicylates and cannot be used. All sunscreens or sunless tanning products with plant derivatives, including oxylsalicylate readily block. Cleansing lotions, astringents, exfoliants, lotions for oily skin and acne compounds, such as Stridex, often contain salicylates.

It is best to avoid herbal shampoos and hair conditioners though they are not on the scalp long. Herbal hair sprays will land on the skin and deliver salicylates. Avoid shaving creams or soaps with menthol or aloe; microscopic cuts produced by razors with aloe-coated, white or colored strips provide direct access into the bloodstream.

Use no herbal bubble baths. Wart and callus removal products almost all contain salicylates. Peptobismol is bismuth subsalicylate. Certain mouthwashes such as Listerine, contain salicylate as do toothpaste's with "gum care ingredients."

These offending substances will be absorbed and partially or totally block the effect of guaifenesin. No adverse reaction ensues but no benefit is attained. Be aware, a few pharmacies have made serious errors. Patients should obtain plain "guaifenesin," not a tablet containing decongestants or anti-cough preparations.

Our therapeutic approach is not for the weak of courage. As we warned above, reversal of the disease often produces many symptoms causing some patients to doubt their progress during the initial two to four months. It takes confidence and strength to get through this early phase. Cyclic appearance of good days and improvement on mapping provides the needed encouragement to go on. HW

HEALTHwatch Treatment Guide Edition     www.ImmuneSupport.com


My therapist told me the way to achieve true inner peace is to finish what I start.
So far today, I have finished 2 bags of chips and a chocolate cake. I feel better already.
Thanks to Betty Hansford

SJ CFIDS/ME/FMS Support Network, Snail Mail July, August September 2001

Possible Drug Recall:
Synthroid

On June 1st, 2001, the Wall Street Journal reported that the Food and Drug Administration has told Abbott Laboratories the maker of Synthroid, one of the nation's most frequently prescribed drugs, that the medicine has a "history of problems" and can not be recognized as "safe and effective."

Synthroid is taken by patients who have hypothyroidism or other disorders of the thyroid, and such thyroid replacement therapy usually continues throughout the patient's lifetime. The agency's statements raise the possibility that the 40-year-old drug, which has never been officially approved for use by the FDA, will be subject to regulatory action that could possibly remove the drug from the market

Patients using Synthroid should be monitored with regular blood tests to assess the effect the medication is having on thyroid function and also to check for toxicity. Too much Synthroid can cause a condition known as "thyroid storm." Patients might experience heart rate irregularities. Clots can be dislodged, and, in some cases, may help lead to stroke. At worst, a general hyperactive metabolic state can even lead to death.

The FDA has indicated that Synthroid needed to be approved by August 14, 2001, but as of June 1, 2001, Abbott has indicated that they have not even applied for approval.

The FDA stated they wouldn't rule out asking for the drug's removal and noted that there are two other approved drugs in Synthroid's class that could potentially fill any void left by Synthroid.

Synthroid had sales of $541.3 million in 2000 and, ranked by number of prescriptions written, was the third most frequently prescribed drug in the country, according to data compiled by IMS Health.

Synthroid went on the market more than four decades ago and never received formal approval from the FDA. According to the Wall Street Journal, such approval was required but neither the agency nor the drugs current owner is certain why it was never received.

In the mid-1990s, the FDA began compiling data on adverse events associated with the use of Synthroid as well as with the use of its competitors. In 1997, it noted that "almost every manufacturer of such drugs had reported recalls because of potency problems.

http://www.injury-lawyer-network.com/synthroid.htm
Use with permission and thanks to:

JERROLD S. PARKER
1-800-LAW-INFO

jerry@yourlawyer.corn
http://www.yourlawyer.com
Parker & Waichman, 111 Great Neck Road, Great Neck, New York 11021.

THE CFS RESEARCH REVIEW

Experts Discuss Diagnosis and Treatment

(Excerpted with permission from an article published in the June 2000 issue of The Journal of Women's Health & Gender-Based Medicine. For information on obtaining reprints of the full article, call the publisher at 914/834-3100.)

What is the recommended approach to treatment? [to CFS]

Dr. Wallace: It is important to approach management of CFS with the understanding that these patients do not metabolize drugs normally, typically demonstrating a low tolerance for any kind of medication. It is essential to use very small doses and begin one or two drugs at a time to monitor the effect and, after four to six weeks, to introduce additional medication if necessary.

I focus my treatment in five major areas:

Orthostatic Intolerance. Patients are treated as if they have a diminished blood volume and are dehydrated. The theory is that too much blood pools in their lower extremities. To counteract this, patients are instructed to increase their fluids to two to three quarts a day and to increase salt through intake in food, salt tablets and occasionally intravenous saline. If this is not sufficient, I may prescribe fludrocortisone to increase blood volume.

Another approach is the use of vasoconstrictors. For this, I prescribe the newly approved drug Midodrine. Although these measures are not always effective, it is all some patients need to regain substantial functioning. Beta-blockers and clonidine are also useful adjuncts that blunt inappropriate tachycardia.

Sleep. A drug that seems most effective is Ambien, which works well for a specific sleep disorder often seen in CFS and fibromyalgia patients-alpha intrusion into delta sleep. Although it has some potential for addiction, Klonopin is a very good sleep drug because it also helps with pain. I use the smallest dose possible. Another effective sleep drug is Neurontin, which also helps reduce pain.

Tricyclic antidepressants (TCAs) can aid sleep, but if I use them, I use tiny doses (5 to 10 mg). The caution with TCAs is that they can cause low blood pressure and tachycardia.

Pain. Although controversial, I believe that long-acting narcotics are needed to relieve pain among these patients. Because there is no inflammation causing the pain, NSAIDs are not likely to be effective. Anticonvulsant drugs, such as Neurontin, can be useful.

General Support. To help with cognitive problems, I rely on stimulating drugs, such as Ritalin, Welbutrin and a new drug, Provigil, which tend to wake up the brain.

For energy levels, there are several complementary preparations I use as adjuncts. I often begin with vitamin B 12 injections (up to 5,000 mg three times/week). Other preparations I recommend include NADH, evening primrose oil (up to 5,000 mg/day) and glutathione by injection.

Coping skills. It is essential to work with patients to accept their limitations. I encourage my CFS patients to do some muscle toning and some light physical activity [as they are able].

Relaxation techniques, such as yoga or meditation, can be useful, but women should be cautious about yoga, which can reduce blood pressure, a preexisting problem for some patients.

Certainly, if concomitant depression is present, it should be treated, in which case the patient's mood is likely to improve but the chronic fatigue syndrome will not.

Dr. Klimas: I begin with sleep, borrowing from the research on sleep dysfunction in fibromyalgia. The most effective drugs are TCAs in low doses, preferably Sinequan elixir, which gives patients eight hours of sleep and simultaneously reduces pain. I begin with 5 mg and work up to 20 to 25 mg.

Next I deal with pain. More often than not, patients arrive with a great deal of pain medication, most of which are short-acting, as- needed medications.

If the patient is having withdrawal symptoms as the pain medication is wearing off, I wean the person from their current regimen and then look for nonpharmacological alternatives, such as massage, stretching and physical therapy (whirlpool, hot tubs).

These ancillary options, along with NSAIDS, seem to work for all but 4% to 5% of patients. For the few who require pain medication, I choose the long-acting, 24-hour opiates at a low dose.

When autonomic dysfunction is present, the goal is to increase plasma volume. Generally, if the patient has a positive tilt-table test and increasing salt and water makes her feel better for a few weeks, the kidneys become efficient at getting rid of the extra sodium, at which time the patient should be prescribed fludrocortisone (Florinef).

Another route is to prescribe alpha 1-agonists, such as pseudoephedrine. The most selective alpha l - agonist is Midodrine.

The third option, often used in combination with one of the other drugs, is to use a beta-blocker to reduce the pulse, allowing for a longer fill time and slowing of the impulses to the stretch receptors.

The hypothalamic- pituitary-adrenal axis (HPA) interventions have not been well studied. Only cortisol has been looked at on a limited basis, and the results were inconsistent. The danger is that cortisol may have to be given lifelong. Thus, it is premature to recommend this drug until we have a better understanding of its efficacy.

With regard to the immune system, we have a system that is hyperactive but not working properly. There is some controversy about using SSRIs as immunomodulators. Anecdotally, I recommend limiting their use to nondepressed CFS patients and giving a four to five month trial to assess improvement.

Are there any alternative treatments contra indicated for CFS?

Dr. Wallace: I try to discourage my patients from trying expensive, unproven treatments, such as chelation therapy and mercury detoxification (dental fillings removed).

Dr. Klimas: Licorice root works like Florinef but also has some adverse effect, which is hypokalemia. Symptoms of low potassium are nearly the same as that of CFS. Thus, physicians should monitor potassium levels.

Dehydroepiandosterone (DHEA) is popular and has its advantages as well as hazards. It affects estrogen and testosterone levels, among other hormones. The problem is that patients may feel good on a small dose (i.e., 25 mg) and then increase it to feel even better, but there is concern about this preparation increasing the risk of breast cancer and other hormone-induced cancers.

St. John's wort is a natural SSRI and should not be taken with other SSRIs. Some effective and safe supplements include a multivitamin with a great deal of the B complex vitamins, vitamin E and eicosapentanoic acid (EPA).

The Mass. CFIDS & FM Spring 2001 Update


Rare Fluoroquinolone Antibiotic-Related Tendon Damage

Certain fluoroquinolone antibiotics may rarely cause painful inflammation or rupture of one or more tendons. This can occur within 1-90 days after initiation of therapy. Tendons most likely to rupture are those often subjected to mechanical stress, such as Achilles tendon of the ankle, the biceps tendon of the upper arm, the rotator cuff tendon of the shoulder and tendons that move the fingers and wrists. Fluoroquinolone antibiotics are newer antibiotics which include Avelox, Cipro, Floxin, Levaquin, Maxaquin, Noroxin, Tequin, and Zagam. Anyone taking one of the above antibiotics who experiences pain over a tendon should rest the affected limb and [rest of article not included: EDITOR].


Irritable Bowel Syndrome Caused by Bacterial Infection?

Excess bacteria in the small intestine have been shown by Cedars-Sinai Medical Center researchers in Los Angeles to be a strong factor in IBS. 202 LBS patients were given a specialized breath test to detect bacterial overgrowth in the small intestine. The overgrowth was present in more than 75% of the patients. After a 10 day course of antibiotics, about half of these patients had eradicated the bacterial overload and experienced significant improvement in diarrhea and abdominal pain. Even those who retained bacterial overgrowth noted a degree of symptom relief. (This would be a believable explanation for the link of CFIDS and IBS, since so many PWCs have multiple types of chronic infections.-L.D.)

(Source: Tufts Health and Nutrition Letter Mar. 2001, Molecular Analysis of Com mensal Host-Microbial Relationships in the Intestine, Hooper et al. (Science 291:881-884, 2001) and "Bacteria and Irritable Bowel. (JAMA 285: 401, 2001))


The Carousel Network
Winning Your Disability Case in Three Words: Frequency, Severity, and Duration
by Scott E. Davis, Esq.

In a disability case, almost any symptom or limitation can be disabling; but to determine whether they preclude work, the relevant questions are how frequent, how severe, and how long do they last?

A critical point I make to people who contact me every day is that their disability case is won or lost based on symptoms/limitations and not on their diagnosis! Clearly, under federal law, a disability claimant has to have a legitimately diagnosed physical and/or psychological disorder to even allege disability, but this is only the beginning of the analysis.

Disability cases are almost always won or lost based on the quality (documentation) of your medical records and the subsequent opinions rendered by your treating physicians regarding your ability to sustain full- time employment. The documentation of symptoms and limitations in your medical records is critical, as it provides tremendous credibility to and an understanding of why your doctors have concluded you are unable to work.

Once a diagnosis is established, the disability inquiry immediately shifts to why you are unable to work due to the symptoms and limitations that result from the diagnosis. I tell my clients that of the total time spent in a disability hearing before a federal judge, 5% is spent on the diagnosis and 95% is spent determining the frequency, severity and duration of symptoms and limitations, and whether they prevent all work. Ignoring this fact places the success of your claim in great peril.. .don't ever forget this!

A common problem disability claimants frequently make is having "tunnel vision and focusing solely on their diagnosis, as if the fact that they have been diagnosed with a disorder automatically confirms they are disabled and entitled to benefits. This is especially true of people suffering from chronic pain and fatigue disorders such as fibromyalgia and chronic fatigue syndrome. I believe this is true because these folks have almost universally been sent on an odyssey by the medical community, simply to obtain a diagnosis. Never forget that obtaining a physical and/or psychological diagnosis is the very beginning, and not the end of your disability case.

Thus, the question becomes, "How do I document the frequency, severity and duration of my symptoms and limitations?

Tip #1: What should I be documenting?

Simply put, whatever it is that prevents you from working. For example, let's use chronic pain and fatigue. It is critical that you distinguish why the pain and fatigue is different from what an average person may experience. If I say "I am in pain and fatigued, that does not tell you much. Why? From time to time we all experience some degree of pain and/or fatigue. But if you tell your doctor, "I am unable to function as I experience severe daily pain and exhausting fatigue lasting most of the day without relief, or "I am unable to function 2 days per week due to migraine headaches that last all day even with medication, now you've given the doctor and the judge an idea of why your symptoms are so debilitating.

Tip #2: Obtain a Copy of your Medical Records from your Treating Physicians

After you have followed Tip #1, the next question becomes, Did the doctor write down what I just told him/ her?

I am often surprised at how many people applying for disability benefits have never seen their medical records. Obtaining a copy of your current treating physician's records is important because it will give you an idea of whether your symptoms and limitations are being recorded. You may be surprised to find that your complaints do not appear in the records or if they do, the doctor's notes are totally illegible! Illegible handwriting is a real problem, because the judges who decide your claim are just like you and I--they don't (and generally won't) try too hard to decipher what the notes say.

If you are not satisfied with the documentation, address the issue tactfully with your doctor and explain the importance of documentation to your disability case. If they are receptive, I suggest you give them a copy of this article for reference.

Tip #3: Keep A Short Diary of Your Symptoms and Limitations before your next Visit to the Doctor

Whether you know it or not, your daily life tells a compelling story about your inability to work. But how do you remember the frequency, severity and duration of your symptoms especially if you can't spell your name at times!

I advise clients to keep a short and simple diary one week before their visit with their doctor. For simplicity sake, the entries should be short and not detailed (otherwise you will not do it). On a day when you were unable to get out of bed due to pain or fatigue, document it. Or document when you slept for only three hours the night before and then took a couple of naps the next day. Or document the migraine headache that lasted for two days in spite of medication. Then, on your next doctor visit, when he/she asks "How are you doing? you will have a laundry list of symptoms and limitations rather than giving them a blank stare!

Of course, winning your disability case is more complicated than this article can address; however, following these tips will significantly increase your odds of winning. Best of luck in your pursuit of disability benefits and remember never to quit!

Scott E. Davis is a social security and long-term disability insurance attorney in Phoenix, Arizona, representing CFS and FM clients around the U. S. In most cases, a fee is charged only if their client obtains benefits. For questions and inquiries regarding representation email (harris.davis@.Org) or telephone at (602) 482-4300.


All drugs containing Phenylpropanolamine are being recalled.

Osco Pharmacy has a sign stating that all drugs containing Phenylpropanolamine have been pulled from their shelves. You may want to try calling the 800 number listed on most drug boxes and inquire about a refund. Please read this carefully, some of you use some of these drugs

Also, please pass this on to everyone you know. Stop taking anything containing this ingredient. It has been linked to increased hemorrhagic stroke (bleeding in brain) among women ages 18-49 in the three days after starting use of medication. Problems were not found in men, but the FDA recommended that everyone (even children) seek alternative medicine.

The following  medications contain Phenylpropanolamine: 

· Acutrim Diet Gum Appetite Suppressant Plus Dietary Supplements

· Acutrim Maximum Strength Appetite Control

· Alka-Seltzer Plus Children's Cold Medicine

· Effervescent Alka-Seltzer Plus Cold medicine (cherry or orange)

· Alka-Seltzer Plus Cold Medicine Original 

· Alka-Seltzer Plus Cold & Cough Medicine Effervescent

· Alka-Seltzer Plus Cold & Flu Medicine Effervescent

· Alka-Seltzer Plus Cold & Sinus Effervescent

· Alka-Seltzer Plus Night-Time Cold Medicine Effervescent

· BC Allergy Sinus Cold Powder

· BC Sinus Cold Powder

· Comtrex Deep Chest Cold & Congestion Relief

· Comtrex Flu Therapy & Fever Relief Day & Night

· Contac 12-Hour Cold Capsules

· Contac 12 Hour Caplets

· Coricidin D Cold, Flu & Sinus

· Dexatrim Caffeine Free

· Dexatrim Extended Duration

· Dexatrim Gelcaps

· Dexatrim Vitamin C/Caffeine Free

· Dimetapp Cold & Allergy Chewable Tablets

· Dimetapp Cold & Cough Liqui-Gels

· Dimetapp DM Cold & Cough Elixir

· Dimetapp Elixir

· Dimetapp 4 Hour Liquid Gels

· Dimetapp 4 Hour Tablets

· Dimetapp 12 Hour Extentabs Tablets

· Naldecon DX Pediatric Drops

· Permathene Mega-16

· Robitussin CF

· Tavist-D 12 Hour Relief of Sinus & Nasal Congestion

· Triaminic DM Cough Relief

· Triaminic Expectorant Chest & Head Congestion

· Triaminic Syrup Cold & Allergy

· Triaminic Triaminicol Cold & Cough

Additionally they are voluntarily recalling the following medicines because of a certain ingredient that is causing strokes and seizures in children.

· Orange 3D Cold & Allergy

· Cherry (Pink) 3D Cold & Cough

· Berry 3D Cough Relief

· Yellow 3D Expectorant

They are asking you to call them at 800-548-3708 with the lot number on the box so they can send you postage for you to send it back to them, and they will also issue you a refund. If you know of anyone else with small children, please pass this on.

Thanks to Jolene

A Code Of Ethical Behavior For Patients (believe it or not: EDITOR)

1. Do not expect your doctor to share your discomfort. Involvement with the patient's suffering might cause him to lose valuable scientific objectivity.

2. Be cheerful at all times.

Your doctor leads a busy and trying life and requires all the gentleness and reassurance he can get.

3. Try to suffer from the disease for which you are being treated.

Remember that your doctor has a professional reputation to uphold.

4. Do not complain if the treatment fails to bring relief. You must believe that your doctor has achieved a deep insight into the true nature of your illness, which transcends any mere permanent disability you may have experienced.

5. Never ask your doctor to explain what he is doing or why he is doing it.

It is presumptuous to assume that such profound matters could be explained in terms that you would understand.

6. Submit to novel experimental treatment readily. Though the surgery may not benefit you directly, the resulting research paper will surely be of widespread interest.

7. Pay your medical bills promptly and willingly. You should consider it a privilege to contribute, however modestly, to the well-being of physicians and other humanitarians.

8. Do not suffer from ailments that you cannot afford. It is sheer arrogance to contract illnesses that are beyond your means.

9. Never reveal any of the shortcomings that have come to light in the course of treatment by your doctor. The patient-doctor relationship is a privileged one, and you have a sacre4 duty to protect him from exposure.

10. Never die while in your doctor's presence or under his direct care.

This will only cause him needless inconvenience and embarrassment.

Thanks to Jolene

SJ CFIDS/ME/FMS Support Network, Snail Mail, July, August, September, 2001


THE CFIDS CHRONICLE SPRING 2001

Pediatric IBS treatment

   A three-center study of children or adolescents with irritable bowel syndrome (IBS) discovered that an ancient remedy may provide some symptom relief. The study, published in the January 2001 Journal of Pediatrics, found that peppermint oil may provide relief for children experiencing mild to moderate abdominal pain associated with IBS.

   Researchers studied 42 children ages 8 to 17 with IBS who were given either a capsule containing peppermint oil or placebo.  After two weeks, the children reported a dramatic reduction in pain, which was measured using rating tools such as the Gastrointestinal Symptom Rating Scale and daily diaries.

   Three-quarters (76%) of the children who received peppermint capsules reported improvement in pain but only 19% of the children who received a placebo reported improvement.  Other clinical studies have shown that peppermint oil can relax the lower esophageal sphincter and relieve symptoms of dyspepsia and colon spasms.

Clinical definitions established in Canada

   The National Myalgic Encephalomyelitis (ME)/ Fibromyalgia (FM) Action Network, a nonprofit Canadian patient advocacy organization, has succeeded in getting a consensus on the clinical definitions and diagnostic and treatment protocols for ME and FM.

   The organization recruited physicians to create a draft document and convinced Canadian health officials to establish a panel of experts, including researchers and physicians from the United States, to review and agree upon final language. In Canada, the terms ME and CFS are used interchangeably. The group purposefully did not take up the name issue in its work.

   While the international CFS case definition is intended only to help guide research, the Canadian definitions and protocols have been developed to assist clinicians in diagnosing and treating patients.

   The panel completed its work in late March, and the Action Network is submitting the definitions and protocols to a Canadian medical journal. The documents will not be publicly available until they are published.

Doctor-patient perspectives on CFS

   A study by researchers in the Netherlands that examined how general practitioners (GPs) diagnose chronic fatigue syndrome (CFS) and what they think of their patients was a reported in the Journal of Chronic Fatigue Syndrome (Vol. 7,#4; 2001).

   The study randomly polled 120 general practitioners (GPs) on how frequently they diagnosed CFS, the causes and attributions of patients complaints, patients expectations, and their opinion on communicating with CFS patients.

   Two hundred and eleven CFS patients were then asked the same questions and the results were compared. When asked to compare their relationships with their CFS patients to other patients, 43% of the GPS reported communication problems, and 31% rated contact and cooperation with CFS patients as poor.

   About half of the physicians reported less empathy for CFS patients as compared to other patients. More than half of the CFS patients said medical specialists did not take their complaints seriously and did not sympathize with them.

   The study also showed a large discrepancy between what GPs and patients believe the cause of CFS to be. Only 34% of patients attributed their symptoms to psychological factors, but 76% of GPs using the CFS diagnosis attributed symptoms to psychological causes.

   The study showed a mere 10% of the practitioners felt they knew enough about CFS to advise their patients and only half of the GPs in the study reported using the CFS diagnosis. Reasons for not diagnosing CFS were unfamiliarity with the criteria (69%) and not acknowledging CFS as a diagnosis (20%).

   The lack of knowledge about CFS underscores the need to develop specific guidelines for providers to identify and manage CFS.

Managing food intolerances

   Researchers at the School of Biological and Chemical Sciences, University of Newcastle, Australia, assessed the clinical value of diagnosing and managing food chemical intolerances in 76 CFS patients with gastrointestinal symptoms.

   Symptom severity was evaluated before and after patients participated in an elimination diet. Multiple symptom improvement was reported by 89.5% of the patients when particular food chemicals and proteins were excluded from their diets, including milk, wheat, commercially prepared bread, natural food chemicals such as salicylates and glutamates, brewer’s yeast, and additives such as nitrites and nitrates, sulphur preservatives, colorings, and antioxidants.

   Symptom improvement included reduced fatigue, fevers, sore throats, muscle pain, headaches, painful joints, difficulty concentrating, and unrefreshed or prolonged sleep.

   The study suggests that food intolerances may be a co-morbid condition in a subgroup of CFS patients.

   Emms TM et al. Food intolerance in chronic fatigue syndrome. Abstract number 15.


PWC Akers Named Player of the Century

Michelle Akers was recently named “Woman Footballer of the Century” in Rome, Italy. “Akers forged her brilliant career in the face of injury and illness... Akers’ perseverance in the face of debilitating CFIDS, which left her too tired to get out of bed at one point and hampered her training for nearly a decade, is a testament to her mental and physical toughness.”

(Source: Reuters and CO-CURE)


CSN Monthly Update

· Mark Your Calendars! October 27, 2001 is set for the 11th Annual Make a Difference Day. Make a Difference Day is the nation's largest day of helping others. Everyone can participate. From the young and old, individuals and groups, anyone can carry out a volunteer project that helps others. This day, co-sponsored by The Points of Light Foundation and USA WEEKEND magazine, provides an opportunity to make a difference in so many lives. Look around your community and see what needs to be done or who needs help. Projects can be registered at the national web site beginning August 1st.  For details on this important event, please visit: http://www.makeadifferenceday.com.

· Reviewers Needed for Chronicle! We are looking for volunteers to assist with reviewing books and/or audio and videotapes for The CFIDS Chronicle. If you are interested in participating, or would like more information, please contact Melissa Hanft at mhanft@cfids.org or 704/365-2343.

· How to Take Advantage of Federal Funds Available for Housing for People with Disabilities. This is an interesting site with information on housing for people with disabilities. On February 26, 2001, the U.S. Department of Housing and Urban Development published its "Super-NOFA" or Super Notice of Funding.

· CanDo.com - Resources and Services for Individuals with Disabilities. CanDo.com is a centralized phone and online service for hard-to-find products, resources and information that inspires greater independence and better daily living for people with disabilities and their support circles. At CanDo.com you can find health products, services and solutions personalized for your particular needs. For free information call toll free 1-877-962-2636; fax 408-991-8710; or visit their website at http://www.cando.com/company/about.html.

Fibromyalgia & Statin Drugs May Not Mix

It has come to our attention that some fibromyalgia (FM) patients may experience an exacerbation in the myofascial symptoms of FM when taking STATIN drugs (i.e., medications with powerful lipid- lowering properties, also commonly known as anti-cholesterol drugs). Examples of STATIN drugs are: atorvastatin (Lipitor), pravastatin (Pravachol), Iovastatin (Mevacor), and simvastatin (Zocor). In such patients, symptoms seem to improve when the drug is withdrawn. Because the risks and benefits of taking these drugs vary from patient to patient, anyone experiencing "myofascia I side effects should consult his/her physician.

Fibromyalgia Frontiers · 2001 (Volume 9, Number 2)

Reports on 2001 AACFS Conference in Seattle

James Baraniuk (Washington DC) showed a poster looking at multiple chemical sensitivity (MCS) using an MCS questionnaire. Four respiratory responses (cough, runny nose, shortness of breath and rhinitis) were found to have the power to predict positive responses and CFS status. 42% of patients with CFS were found to suffer MCS compared to 3.8% controls. Clusters of substances most associated with the symptoms were: volatile organic compounds or fine particulate materials. Medication-related symptoms were common in women with CFS but not other groups.

Skeletal oxidative damage was observed in CFS patients by D Racciatti (Italy). This was thought to be a consequence of imbalance between an abnormal production of reactive oxygen species (due to oxidative metabolism related to mitochondrial activity) and a disabled scavenger enzyme system. This data supports an organic origin of CFS.

Pascale de Becker (Brussels) compared exercise capacity in healthy sedentary females with that in females with CFS. There was significant decreased capacity in those with CFS, and reaching the target heart rate seemed to be the limiting factor. Autonomic disturbances may be implicated.

Published by Massachusetts Chronic Fatigue Immune Dysfunction Syndrome and Fibromyalgia Association
P0 Box 690305 Quincy, MA 02269-0305 (617) 471-5559
Website: www.masscfids.org. Email: webmaster@masscfids.org

"The best way to cheer yourself up is to try to cheer somebody else up.
- Mark Twain

End of Volume 15, Issue 3, August 2001

EDITOR'S NOTE: This is the last newsletter for 2001. We'll have at it again next year.