Volume 13, Issue 2 -- Spring 1999




CCCA CALENDAR

Sat. May 8, 1 - 3 PM Group Meeting - Speaker: Crystal Sage (see below)
Wed. June 2, 6 - 7 PM Newcomer/Share Meeting
JULY - No Meeting VACATION!
Wed. August 4, 6 - 7 PM Newcomer/Share Meeting
SEPTEMBER ... Major Speaker Event ... TBA
Wed. October 6, 6 - 7 PM Newcomer/Share Meeting
Sat. Nov. 13, 1 - 3 PM Group Meeting
Wed. Dec. 1, 6 - 7 PM Newcomer/Share Meeting

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 floor conference room, 3160 Folsom Blvd. (at Alhambra), Sacramento.

**Please Note: Some people are chemically sensitive, so we ask that you not wear any fragrances to the meetings. Thank You!**

 

CCCA MEETINGS

May 8th Meeting

Crystal Sage To Speak

We have scheduled Crystal Sage to speak at our next meeting. She a meeting some time ago, and has agreed to come back and give another presentation. Crystal suffered from CFIDS, but has cured herself from all symptoms through the N.A.E.T. allergy elimination system of acupressure. She is a doctor of Naturopathy, along with several other healing modalities, and is a dedicated healer who has worked and studied extensively to master and improve this treatment method. Her clients include many who suffered from CFIDS and fibromyalgia, as well as other ill-diagnosed, strange symptoms, from skin lesions to photo-sensitivity to insomnia to migraines. Of course, MCS folks are often helped a great deal with this treatment as well. Crystal recently published a book that covers a great deal of advice on healing.

We are excited to have such a dynamic and compassionate speaker with a lot of information and potential help to offer.

Letter Writing

We will have some letters to our government representatives available for your signatures. We would love to gather as many signatures as possible to send to Washington, DC in support of National Lobby Day in Congress, and National CFIDS Awareness Day on May 12th (see article on page 10). We will provide the letter, envelopes, stamps, and addresses -- all we need from you is your signature! If you would like to write a separate letter, we will provide support and materials for that as well.

Free Parking At The Saturday Meeting!

The meeting will take place at 3160 Folsom Blvd. - on the Northeast corner of Alhambra, right off the Capitol City (Business-80) freeway. From either Folsom or the next street north, turn into the parking structure and find the elevator in the middle of the structure. Park, go up the elevator to the 3rd floor, and follow the signs to the meeting room! It's easy. Free parking and no stairs!! See you there!

March Learning Exchange CFS Event

On March 20th, Dr. Bruce Ebert of Roseville presented a Chronic Fatigue seminar through the Learning Exchange. Dr. Ebert's presentation was all that was promised. He was informative, entertaining, and a compassionate advocate for the proper care and treatment of CFIDS. He spoke for about half the seminar on signs, symptoms, tests, and treatments for CFIDS, covering the latest in research findings for treatments and markers for the illness. As a past sufferer and as a psychologist, he is very understanding, as well as very well informed, about the many implications of living with this syndrome.

The second half of the seminar was devoted to legal cases that have an impact on the fight for disability by those with chronic fatigue syndrome (CFS) and FMS. As a lawyer often fighting on the behalf of disabled PWCs, he is equally well informed about the way the various disability insurers look at claims and how to present the illness in such a way as to meet their criteria. He spoke about several recent court judgements that, through the notion of precedence, should bring favorable impact to future judgements. For example, in 1997 a disability judge decided that a doctor cannot decide if a patient is "totally disabled" because it is a legal term, not a medical condition. A case in 1999 included several important precedents to know about in a legal fight: one judge said (paraphrased from my paraphrased notes from his paraphrased summary! Please call Dr. Ebert for the actual case name or for clarification.) that a judge cannot reject a person's testimony about their own symptoms (pain) without convincing evidence to do so; a judge cannot use the fact that the person made it to the hearing as "proof" they are not disabled; that consulting doctors have less weight than a person's own doctor and that a judge should consider the combination of effects of CFS with other problems. While it is true that ALJ judges are not as bound by precedent as other courts, it always helps to know what other decisions stand that may help your case. Again, please do not call the hotline number for further information - I am just passing on what the good doctor said. He is, as mentioned, both a past sufferer and a current lawyer for these kinds of cases.

One More Note...

A huge Thank You goes to Dr. Ebert for donating his entire proceeds from that talk to this group. This was unsolicited and most generous. It will enable us to continue to put out the newsletter to those of you who are not able to send the membership fee, which is the way we pay for the postage and copying costs.

 

CCCA GROUP NEWS

Holistic Health Practitioner

For those of you able to get to Colfax, one of our members submitted the name of a Holistic Health practitioner there who he believes has helped him. Her name is Catherine Picoulin, BSRN, ND, Ph.D. She specializes in CFS and related syndromes. In her brochure she lists Herbology, Homeopathy, Hypnotherapy, and Detoxification programs, Restorative nutritional diets, and Supplementation as areas of expertise. She can be reached at (530) 637-5912.

Sacramento Valley CFIDS/FMS Support Group

There is another support group now that meets in the Carmichael area of Sacramento. They are called the Sacramento Valley CFIDS/FMS Support Group. They meet at 5777 Madison Ave. Suite 180, from 2 to 4 PM on the first Sunday of the month. The phone number is (916) 334-7393. The next two meetings have speakers:

May 2 - Lynn Amara, Homeopath
Topic - Homeopathy in the treatment and control of CFIDS/FMS.

June 6 - Robin Andrews, BS Psychology, C.M.T.
Topic - "Out With The Old And In With The New: 12 Steps To Life Renewal." Accepting yourself after CFIDS/FM.

Auburn Support Group

Alisa Greenhill, MFCC, is beginning a facilitated support group (you may want to ask whether there is a fee) in Auburn. It will be to help individuals with CFS deal with feeling "misunderstood by physicians, families, co-workers and friends" and feelings of being isolated and needing a safe place to "voice their thoughts, express their feelings, explore their options and share their success and failures in dealing with this debilitating condition." Alisa also has CFS. Please call her if you would benefit from this group in Auburn. (530) 885-6164.

For Those Who Have Missed Her At The Last Meetings...

Kate G. is at UCLA getting another round of neck surgery and hybperbaric pressure chamber treatments to help with both CIFDS (part of the Dr. Tuft protocol) and her back and neck problems. I'm sure she would love to hear encouraging words from anyone who would like to send them to her. She can be reached at (323) 939-3184 until mid-May.

Pen Pals

One of our members now lives in New Hampshire and is looking for pen pals. If you would like to correspond with a PWC, or know someone who would like to, please write: Pauline Quiet, 61 Nashua St., Manchester, NH 03104.

 

CFIDS NEWS

New Antibodies Discovered In Many Fibromyalgia Patients

Autoimmune Technologies, LLC, a New Orleans biotechnology company, announced February 10, 1999 that scientists have discovered a new antibody in the blood of many fibromyalgia patients. This research is described in an article entitled "Anti-Polymer Antibody Reactivity in a Subset of Patients with Fibromyalgia Correlates with Severity," which appears in the February 1999 issue of The Journal of Rheumatology.

Using a patented blood test called the Anti-Polymer Antibody Assay, or APA Assay, researchers found anti-polymer antibodies in approximately one-half of all patients who were diagnosed with fibromyalgia and in a more than 60% of the fibromyalgia patients with severe fibromyalgia symptoms. Patients with diseases frequently confused with fibromyalgia, including rheumatoid arthritis, systemic lupus erthematosus, and systemic sclerosis/scleroderma, had a much lower incidence of these antibodies than did the fibromyalgia patients.

Fibromyalgia syndrome is often difficult to diagnose, and typically a diagnosis is reached through the time-consuming and expensive process of ruling our other illnesses that have similar symptoms. In addition, many physicians consider fibromyalgia to be the result of aging and other normal body processes and do not regard it as a distinct clinical disorder. The resulting reluctance on the part of some physicians to attribute their patients' symptoms to a specific illness has added considerably to the distress of many fibromyalgia patients. Until now, there has been no laboratory test to help identify fibromyalgia.

"Our results show that there is a unique immunological response in many fibromyalgia patients," said Russell B. Wilson, Ph.D., president of Autoimmune Technologies and lead investigator of the published study. "We hope that these findings will lead to a better understanding of the illness and to the development of treatments for these patients."

It is possible, Dr. Wilson pointed out, that anti-polymer antibodies are associated with one of the several different causes of fibromyalgia, perhaps the cause that tends to produce the most severe symptoms. The published data indicates that this may be the case, although more research will be needed. In addition to serving as a marker for fibromyalgia, he noted, it is also possible that these antibodies are directly involved in initiating or promoting fibromyalgia.

Autoimmune Technologies expects during 1999 to apply to the US Food and Drug Administration for approval of a kit form of the Assay as a diagnostic test. "The reproducibility of the APA Assay has already been independently demonstrated by the National Institute of Public Health and the Environment, or RIVM, in the Netherlands," said Dr. Wilson. "The RIVM has found the APA Assay to give reproducible results and to be useful for the evaluation of the presence of anti-polymer antibodies in human serum. The other confirmatory studies discussed by Drs. Russell and Bennett are already under way. These studies, together with our research published in The Journal of Rheumatology, will be included in our application to the FDA for approval of the Assay as an in vitro diagnostic test to aid in the diagnosis of fibromyalgia."

Other authors of the article in March's issue of The Journal of Rheumatology include Dr. Oscar S. Gluck and Dr. John R.P. Tesser of the Arizona Rheumatology Center in Phoenix, Dr. Janet C. Rice of Tulane University School of Public Health and Tropical Medicine, and Dr. Alan J. Bridges of the University of Wisconsin School of Medicine in Madison.

An APA Assay kit is not currently in commercial distribution in the US, although the Assay is being performed by Autoimmune Technologies as a service to physicians and researchers for investigational use only. A kit form of the APA Assay will be available in the near future in other countries.

For further information, visit the Autoimmune Technologies Web site at www.autoimmune.com or contact Russell B. Wilson, Ph.D., President or Michael D. Charconnet, Manager, 114 Elks Place Suite 1402 New Orleans LA 70112, (504) 529-9944, mailbox@autoimmune.com. (Support Line, CFIDS Support Group of Northern Nevada and the Sierra, March 1999)

Senator Reid Requests CDC Audit

On September 28, 1998, Senator Harry Reid of Nevada asked the General Accounting Office (GAO) to conduct a comprehensive investigation into the Centers for Disease Control and Prevention's (CDC) CFS research program. This comes after Dr. William Reeves admitted that his agency, the CDC, had been lying about the amount of funding spent on CFS research. Preliminary feedback from the IG auditor assigned to the investigation indicates that her findings corroborate Dr. Reeves' report. A spokesperson for Senator Reid said that the IG report should be released by the first of the year.

Members of the Department of Health and Human Services' (DHHS) Chronic Fatigue Syndrome Coordinating Committee (CFSCC) had tremendous interest in the CDC situation when they met on Oct. 13. The CFSCC agreed to hold a special meeting to make recommendations to DHHS Secretary Shalala about the IG's report, as long as the report is released by mid-January. If the report is finished after that date, the Committee decided to simply take up the issue at its April 21-22, 1999 meeting. For more information on the CDC funding investigation, visit the CFIDS Association of America's website at www.cfids.org.

ICD Code Discussed

The CFSCC formed a working group to study and make recommendations about the appropriate diagnostic code that should be used for CFS. The International Classification of Diseases (ICD) lists the codes that health-care providers and insurance companies use to identify a patient's diagnosis. Currently CFS is indexed in the ICD-9CM as 780.71- "Signs, Symptoms and Ill-Defined Conditions/ Malaise and Fatigue." The CFSCC expressed dissatisfaction with that listing and appointed Kim Kenney, Dr. Nancy Klimas and a representative (to be named) from the CDC to determine where CFS should be listed in the ICD-10 CM, which the US is expected to implement in 2002.

The ICD-10 has been used around the world since it was published in 1992, but the US has not yet adopted it because of the difficulty of converting the entire US health care industry to a new coding system. Instead, the US publishes an annual update to the ICD-9 (called the "CM"). In the international ICD-10, CFS is indexed to the code G93.3 -- "Other Disorders of the Brain / Postviral Fatigue Syndrome or Benign Myalgic Encephalomyelitis." The US agency that updates the ICD annually, the National Center for Health Statistics (NCHS), has been reluctant to simply pick up the international G93.3 code, because they are unaware of the scientific evidence for listing CFS in a more specific area.

The CFSCC working group will provide support to convince NCHS that science has progressed to the point in which CFS no longer fits into the "Signs, Symptoms and Ill-Defined Conditions" category, and would be more appropriately placed in a neurological or central nervous system category. (Mass CFIDS 1998/99 Winter Update)

Possible Link Between Chronic Fatigue And Mental Impairment

A recent report suggests that chronic fatigue syndrome (CFS) may cause mental impairment that cannot be explained by psychiatric factors. Researchers at the New Jersey Medical School conducted cognitive function tests and functional measurements in 53 patients with CFS and 32 healthy controls to collect data. The study found that those CFS patients who failed two or more of the cognitive function tests reported significantly more days of functional inactivity in the month prior to the tests than those who did not fail any of the tests. Authors say the findings suggest that the association between cognitive impairment and functional disability is not simply a consequence of psychiatric factors. The report is in the Journal of Neurology, Neurosurgery, and Psychiatry (1998;64:431-434). MedBriefs (INC Inc.) 5/28/98 (Mediconsult www.mediconsult.com/cfs/news)

 

ARTICLES

Enada: Completed Clinical Trial Establishes Efficacy Of NADH As Treatment For CFS
By John W. Addington
Reprinted from Snail Mail, the newsletter of the San Joaquin CFIDS/ME/FMS Support Network

Sufferers of Chronic Fatigue Syndrome can be heartened by the favorable results of clinical trials of the nutritional supplement NADH for use in the treatment of their debilitating disorder. The outcome of this important study has recently been published in the respected medical journal Annals of Allergy, Asthma & Immunology. (Vol. 82, pp. 185-191, Feb. 1999). Healthwatch and The CFIDS & FM Health Resource published preliminary results of this study, which was conducted at the prestigious Georgetown University Medical Center in Washington, DC. This trial marks one of the first times the FDA has approved a nutritional supplement for evaluation as a medical treatment.

Benefits Seen in the Double-blind, Placebo-Controlled Study

Twenty-six patients who met The Centers for Disease Control and Prevention's (CDC) criteria for CFS completed the 12-week double-blind, placebo-controlled study. Double-blind is a scientific term meaning neither the investigating doctors or the patients knew who was given NADH or the placebo. During weeks one through four, patients received either 10 mg of NADH or a placebo, whereas weeks five through eight were a 'wash-out' period during which patients received no active treatment. During weeks nine through twelve, patients' treatment was switched so they received the alternate treatment - either placebo or NADH - relative to their first four weeks. Laboratory tests were completed at the beginning and end of the study, and symptoms were evaluated based on patients' response to an extensive questionnaire given prior to the study, as well as at the conclusion of weeks four, eight and twelve.

Eight of the patients showed at least a 10% improvement while taking NADH, as opposed to only two of those taking the placebo. The success rate after only four weeks of NADH treatment was 31 % versus only 8% for patients given the placebo. Presented statistically, patients receiving NADH were four times more likely than those taking a placebo to experience a reduction in symptoms.

A Longer Open Label Study Yields Greater Results

The authors of this published study feel there is cause for optimism as to even potentially greater benefits of NADH, a safe, naturally-occurring antioxidant, in the treatment of CFS. These doctors believe that a longer period of treatment may result in a higher percentage of patients responding favorably. To test this theory, doctors enrolled patients in a longer, open label (as opposed to double-blind, placebo) follow-up study. The Annals of Allergy, Asthma & Immunology journal article reports that to date 72% of patients in this open study have reported significant improvement of their symptoms and energy levels. However, Matthew Fitzsimmons, the president of Menuco Corporation, which supplied the patented form of NADH used in the study, recently revealed that up to 80% of patients in the longer (ongoing) study have responded favorably.

Study Reveals Possible Markers for CFS

A particularly interesting finding brought to light by Georgetown's NADH study was the discovery of unusually high urinary concentrations of 5-hydroxyindole acetic acid (5-HIAA), a substance produced in the metabolism of the brain neurotransmitter seretonin. Laboratory tests conducted on the patients prior to the study revealed 50% showed this biological anomaly. Tests conducted after NADH treatment showed 5-HIAA levels had returned to normal in all patients. The study's authors theorize that abnormal 5-HIAA urinary concentrations may serve not only as a diagnostic indicator of CFS, but may also be predictive of particular CFS symptoms.

The study also revealed the discovery of another potential biological marker for CFS, the presence of high antibody levels of Human Herpes Virus-6 (HHV-6) in 40% of the study's participants. Researchers at the international AACSF conference in October, 1998 presented research indicating HHV-6 may be active in as many as 70% of CFS patients at any point in time.

The More NADH The Better

NADH is an abbreviation for the reduced form of nicotinamide adenine dinucleotide, also called coenzyme-1. The fact that our bodies must have NADH to convert food into energy illustrates NADH's fundamental importance. Through this process each molecule of NADH yields three molecules of adenosine triphosphate (ATP), the body's primary source of cellular energy. Professor George Birkmayer, M.D., Ph.D., a world-renowned biochemical researcher and coauthor of the published Georgetown study, illustrates the function of coenzymes and NADH as follows:

"You can compare enzymes and coenzymes with an engine and its fuel. The enzyme is the engine and the fuel is the coenzyme. Without its coenzyme the enzyme will not work. The deficiency of a needed coenzyme will actually slow down the enzymatic production process. A deficiency of NADH is the same as a car running out of gasoline. The more NADH a cell has available, the more energy it can produce".

In his text, NADH: The Energizing Coenzyme, Professor Birkmayer outlines four other main functions of NADH aside from its energizing ability. 1. Cell regulation and DNA repair, which aids in the repair of genetic damage, retarding disease perpetuation from chronic illnesses such as cancer, rheumatoid arthritis and immunodeficiencies. 2. Enhancement of the immune system by increasing the effectiveness of white blood cell function. 3. NADH is the foremost antioxidant, having an enormous capacity to destroy free radicals that have been implicated in neurodegenerative disorders such as Parkinson's, Alzheimer's, as well as numerous autoimmune diseases. 4. NADH can significantly increase the production of adrenaline, as well as dopamine, another important neurotransmitter, by as much as 600%. Since dopamine and adrenaline stimulate strength, movement, coordination, alertness, cognitive functions, mood, sex drive, and growth hormone secretions, the need for NADH is readily apparent.

This quick overview of NADH's functions may help explain why CFS symptoms improve with the supplementation of NADH. Those involved in the Georgetown study feel these improvements are ultimately attributable to NADH's energy production through ATP generation. Also, the study's unanticipated findings on high levels of urinary 5-HIAA may also demonstrate the importance of NADH in the improvement and evaluation of chronic fatigue syndrome patients.

Enada, The Only Therapeutic Form of NADH

NADH disintegrates rapidly without proper stabilization, rendering it biologically inactive Professor George Birkmayer overcame this challenge in 1993 by developing a stabilization proem that yields the only stable, biologically active form of NADH, patented under the name Enada. The Georgetown study utilized the Enada NADH in its study because of its bioavailability.

In the Georgetown study, patients took 10 mg (two 5 mg tablets) with water on an empty stomach in the morning, 45 minutes before breakfast. The study notes that different patients may require dosage adjustments based on response. Patients that do not respond to 10 mg may require an increased dosage, while a lower dosage may be sufficient for others. Menuco Corporation states in the package flyer that the suggested dosage for therapeutic use is 5 to 10 mg daily, depending upon individual requirements and the guidance of your physician or healthcare professional.

It is likely that more studies will be conducted to determine Enada NADH's benefits in the treatment of CFS and other diseases. However, many CFS patients have already begun to use Enada and are delighted with the results. Given the recently published positive findings of the Georgetown study, there are even stronger grounds for CFS sufferers to add NADH to the arsenal of weapons they currently use to manage their symptoms

Scientific NADH/CFS study abstract NADH: A New Therapeutic Approach In Chronic Fatigue Syndrome (CFS)

L.M. Forsyth, MD; A.L. MacDowell-Carnciro, MD; G.D. Birkmayer, MD; Ph.D.; H.G. Preuss, MD; and J.A. Bellanti, MD; Departments of Pediatrics and Microbiology-Immunology and the Immunology Center, Georgetown University Medical Center, Washington, DC.

Chronic fatigue syndrome (CFS) is a disorder of unknown etiology, consisting of prolonged, debilitating fatigue, and a multitude of symptoms including neurocognitive dysfunction, flu-like symptoms, myalgia, muscle weakness, arthralgia, low-grade fever, sore throat, headache, sleep disturbances, and swelling and tenderness of lymph nodes. No effective treatment for CFS is known.

Objective:

The purpose of the study was to evaluate the efficacy of the reduced form of nicotinamide adenine dinucleotide (NADH) administered orally in a randomized, double-blind, placebo-control, crossover study in patients with CFS. NADH is known to trigger energy production through ATP generation, which may form the basis of its potential effects. The study drug is ENADA® NADH the only stabilized absorbable oral form of NADH a nutritional supplement product.

Methods:

Twenty-six evaluatable patients who fulfilled the CDC criteria for CFS completed the study. Medical history, physical examination, laboratory studies and questionnaire were obtained at baseline, 4, 8, and 12 weeks. Subjects were randomly assigned to receive either 10 mg of NADH (ENADA®) or placebo at week 0 for a four-week period, followed by a four-week wash-out period, followed by a final four-week period in which subjects were crossed to an alternative regimen.

Results:

No adverse effects were observed related to the study drug. Within this cohort of twenty-six patients, four times more patients responded to NADH (ENADA®) compared to placebo.

Conclusion:

Collectively, the results of this preliminary study indicate that NADH (ENADA®) may be an effective therapy in the management of Chronic Fatigue Syndrome and suggests that further clinical trials be performed to establish its efficacy in this clinically perplexing disorder.

The full scientific study is submitted for peer-review publication in the Annals of Allergy, Asthma and Immunology.

Open-Label Study:

During a follow-up, open label, pilot study, it was observed that 73% of the subjects achieved marked improvement over time. Therefore, based upon these encouraging results, we have decided to continue the open-label study in a larger cohort of participants.

http://www.immunesupport.com
The Healthwatch newsletter and catalog can be ordered free of charge by calling 800/366-6056


Definition Of An Illness
David S. Bell, MD
The Lyndonville Journal
January 1999, Vol. 1, No. 1

Is there anything that could be considered typical chronic fatigue syndrome (CFS)? This illness with its myriad of symptoms and variety of outcomes seems to come in all sizes and shapes. If fatigue is the worst symptom we call it CFS, but if muscle pain is the worst symptom we call it fibromyalgia. Is there really a difference? The difficulty in answering this question relates to the fundamental principles that underlie the illness, not just the superficial symptoms.

And it is an important question. The diagnosis is difficult enough when the symptoms are "typical" what about when they are somewhat unusual? Much is said of the crushing fatigue, constant headaches, and difficulty thinking in CFS. But some patients may not have these symptoms dominate their illness and thus become confused as to diagnosis. Some even state that they do not have "fatigue" as the most severe symptom. How could they have chronic fatigue syndrome when fatigue is minor? Going further, what exactly are the defining characteristics of this strange illness?

Fatigue is certainly among the most important characteristics of CFS, but how do you define fatigue? The term "fatigue" is meaningless when it comes to illness because it is a normal state. It is defined as recovery from exertion, and that is exactly what does not happen in CFS. Whatever is the symptom of fatigue in CFS is not a normal state. It is a very ambiguous term. If someone says they have fatigue I do not know what they mean. The fatigue of anemia is tiredness while climbing the stairs. The fatigue of diabetes is tiredness that goes unrecognized until the sugar is corrected. The fatigue of stress is a frazzled tiredness. The fatigue of CFS is unique and very hard to define. The closest term I can come up with is "asthenia."

And, paradoxically, despite the confusion as to the term fatigue, it is not the most severe symptom in most patients with CFS. This is particularly true in children. But while it may not be the most severe symptom, it usually dominates the pattern of other symptoms.

In 1987, our office did a questionnaire study on 100 patients diagnosed with CFS, asking them to list the three most worrisome symptoms they experienced in the order of decreasing severity. Only 49% of patients listed fatigue as the most severe. Other candidates were headache (13%), cognitive difficulties (7%), muscle pain (7%), sore throat (6%), lymph node pain (5%), abdominal pain (5%), joint pain (3%) and other symptoms (5%). Nearly all patients listed fatigue among the top three symptoms. All patients had activity limitation because of fatigue. Of those persons who do not list fatigue in the list of symptoms it Is usually because they forgot about it - not even people with CFS always understand the fatigue.

So how can CFS be defined? Assuming the presence of a characteristic physical exam, and no other illness obvious from blood testing, my list of defining characteristics would be the following:

1) Characteristic symptom pattern (fatigue, headache, joint pain, muscle pain, abdominal pain, cognitive difficulties, sensitivities, sore throat, lymph node pain, etc.)

2) Activity limitation

3) Orthostatic intolerance

4) Chronicity

5) Symptom fluctuation and the presence of relapses and remissions

The pattern of symptoms is well known to those familiar with CFS, and I will not go into them here. For me, the most Important diagnostic feature of this illness is the activity limitation. The patient with CFS is not able to do a normal amount of activity in a day because of "fatigue", whatever that is.

It could be described as weakness, or sleepiness, or rubbery muscles or brain fog, or tiredness, but it limits the degree of overall activities. The other symptoms may be present but are not limiting the activity. For example, it is not the joint pain which prevents the CFS patient from activity, it is the fatigue.

And what is normal activity? In another study our office did with the help of friends in the CFIDS community, we asked healthy persons what they did in a normal day. All persons who considered themselves entirely well had at least 12 hours a day of upright activity. In other words they were "up and around" for half of the day, either work or some other activity. Patients with CFS have a limitation of this activity. Mild cases can only be "up and around" for 10 hours a day. This Is a limitation because they used to be up and around from 7AM till 10PM or I5 hours a day. Severe cases are "up and around" for 1 hour a day and that only with rest periods.

The next most important factor is orthostatic intolerance. This aspect of CFS was unknown to me until meeting with Dr. David Streeten, but now I see it as an essential for the diagnosis. Essentially orthostatic intolerance means that all symptoms are worse on being in the upright position. Walking, standing and even sitting are all upright activities. When lying down, most persons with CFS feel better, despite being bored out of their minds.

The chronicity of the symptoms is an equally important feature. Of the many patients I have seen, only a handful can say that they have a single day in the past year where they felt entirely well. Many persons say they have "good days", but they define a good day not by being well but by being improved over the average days. More severe patients may not even have single hours during the past year where they felt entirely well. The day to day persistence of the "sick" feeling is essential to the diagnosis.

And lastly I would emphasize the symptom severity fluctuation along with the variation of the worst symptom. The activity fluctuation may go from two hours a day in one month to four or five hours in another. But during this time different symptoms take the lead in being the most troublesome. Severe headaches for three weeks, followed by muscle pain for the next three. A month later the sore throat is there every day, and another month later the irritable bowel is acting up. Overall, all the symptoms seem to hang around, but they take turns leading the pack. It is the overall pattern of these symptoms that is important in making the diagnosis, not the most prominent symptom on a given day.

This is the reason the list of symptoms in CFS is different from one researcher to another. If you ask about the symptoms on January 1st, they may seem different than if you ask on July 1st. The pattern is the same, always dominated by the "sick" feeling that is so impossible to describe.

Taken together this combination of characteristics defines the illness we are calling CFS. The symptom pattern alone is insufficient for diagnosis, but combined with a typical physician examination and blood tests, and the pattern of illness persistence over time, the diagnosis becomes clear.

Dr. David Bell, author of "The Disease with a Thousand Names" and numerous articles on CFS, now produces a newsletter, The Lyndonville News. The annual subscription is $15 for 6 issues, payable to Lyndonville News, Lyndonville Family Health Center, 77 S. Main St., Lyndonville, NY 14098.

For a complimentary issue, send an email request to CFS-DSBELL@juno.com. In the subject simply write newsletter. In the body of the message write your email address, or the address you wish the newsletter to be sent. Be sure to include your name, address, and email address where we can email you your subscription.

 

GET INVOLVED

Your Voices Were Heard! Franken Responds

In the last issue of Enlightenment we asked you to send letters to author/comedian Al Franken in response to his joking in his new book, Why Not Me? that "President Franken" gets "chronic fatigue syndrome," which is "the same thing as depression" during appearances on the "Today Show" and "Late Night with David Letterman." In a response to the hundreds of email messages and letters he received, Mr. Franken wrote:

"I have received a tremendous number of e-mail's and faxes from hurt and angry people who believed I was saying that chronic fatigue syndrome is depression. Again, I completely understand how someone could have drawn this inference from what I said, and I'm very sorry and embarrassed. Since my mistake, I have learned more about CFS and understand better than ever that CFS is a very real and often incapacitating disease. The last thing the sufferers of this disease need is the dissemination of misinformation.

I have made sure that in subsequent recountings of the book's storyline I have made it clear that CFS and depression are not the same thing. Again, I am very sorry, and I ask for your forgiveness..."

WECAN Events

Awareness Day Banner

The Worldwide Electronic CFIDS/ME Action Network (WECAN) is creating a banner to be displayed during their May 12 rally and the CAA Lobby days. The banner will be made from 1/2 sections of pillowcases with the name of a patient, state/country and the date they became ill on each section. See box on next page more information.

Silhouette Webpage

WECAN has begun creating a webpage of PWCs. Individuals interested in participating should go to the website at ftp://shell2.ba.best.com/pub/wecaninc/public_html/incbin/ and use their "upload file" menu option to send a binary file containing a picture of themselves. After sending the binary file, please write a short, one-paragraph description including your name or initials, state, date of onset/length of illness and the name of the file sent to the web page. Email this description to willow@azstarnet.com. If they get enough pictures and profiles, WECAN may incorporate them in a book, calendar, or collage for CFIDS/ME/FMS Awareness. WECAN's website can be found at http://www.wecantogether.org.

Reporter Advocates End To CFS Research

On March 16, New York Times Health reporter, Jane Brody wrote an article which demanded a strong response from CFIDS advocates. The main theme of Ms. Brody's column was, since the causes of CFS, fibromyalgia, multiple chemical sensitivities, Gulf War syndrome, and silicone implant-related illnesses have not yet been found, scientific research should cease. Ms. Brody's sources were Dr. Simon Wessely, a British psychiatrist, Dr. Kenneth Hyams, head of the US Naval Medical Research Center's epidemiology branch, and Elaine Showalter, a Princeton humanities professor. The complete article can be found in the Internet at: http://www.nytimes.com/library/national/science/031699sci-symptom-related-disorder.html.

 

WECAN Awareness Day Banner

Pillow cases used should be standard size (28 X 20 inches) with the names of patients, the state/country where they live and the date of onset marked on each section. Pieces should be hemmed 1/2 inch all the way around and embroidered, appliqued, or marked somehow with your information. If you wish, you can also add the initials of the illness(es) you've been diagnosed with.

For those who are unable to embroider, there are several non-toxic glues available: Designers Tacky Glue by Aleene, Sobo and regular Elmers glue (not the children's school glue or yellow for wood). Fabric, ribbons, buttons etc. can be stitched on or glued on to decorate your piece. Please use stitching or non-toxic glues or fabric paints to ensure that this project will be accessible to all our members and visitors, including those with MCS.

The banner will be divided into sections by country and state with a piece appliqued with the shape of state or country beginning each section. The banner pieces will be sewn together by volunteers.

There are pillowcases, rickrack, and ribbons being donated. Volunteers are available to put your name and information on a piece or hem the piece for you should you be unable to do it yourself. If you need a donation, please contact Paula Frighetti by email at willow@azstarnet.com or by regular mail at 7133 E 28th St., Tucson, AZ 85710.

If you reside in California, Idaho, Oregon, and Washington, please send your information and/or pillowcases to Sandra Grier, 1201 W. Gage Ave., Fullerton, CA 92833-4731

If you would like to respond, Letters to the Editors can be sent to The New York Times, 229 West 43rd Street, New York, NY 10036, faxed to (212) 556-3622 or emailed to letters@nytimes.com. (CFIDS MONTHLY UPDATE, April 1999)

Poetry And Essays Wanted

Writer Peggy Munson is seeking eloquent, thought-provoking essays and poetry for an anthology of CFIDS writings from diverse perspectives. This book will be geared toward presenting CFIDS issues to a general audience, dismantling the cultural myths around the illness, and tackling the political and social issues that keep CFIDS patients from attaining proper health care. These include legal issues, medical ethics issues, personal care issues, issues about the name "CFS" and media issues. While the book will take on serious subjects, humor and satire are also welcome.

Please submit no more than two typed, double-spaced essays and three poems for consideration. Include bibliographical information if applicable, a short author bio (listing prior publications, if applicable) and a self-addressed, stamped envelope if you would like your work returned. For more information, please contact Peggy Munson by email at Peggomatic@aol.com or by mail at PO Box 603010, Providence, RI 02906. (CFIDS MONTHLY UPDATE, April 1999)

 

RESOURCES

New IDEA '97 Regulations Now Available On The Web

Regulations for the reauthorized Individuals with Disabilities Act (IDEA) were released by the US Department of Education on March 12, and are available on three websites: www.pacer.org, www.fape.org, and www.taalliance.org. These regulations interpret federal law that sets education policy for the nation's 6 million children with disabilities. IDEA '97 focuses on improving the education of disabled children by stressing the quality of education and their right to participate in school's general curriculum. To obtain additional information about IDEA '97 and regulations clarifying it, call 888/248-0822, 612/827-2966 or email fape@pacer.org. (CFIDS MONTHLY UPDATE, April 1999)

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.


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