Volume 13, Issue 1 -- Winter 1998-99




March Main Event!!

March 20, 1-4pm.

There will be no meeting at the MedClinic in March. Instead, we urge you to send all of your family, friends, and anyone who may have CFIDS, or CFS disability issues, to the Learning Exchange's Chronic Fatigue Seminar. This seminar is a repeat of one given last year by Dr. Bruce Ebert, of Roseville. He is interesting and very well informed about the illness from several aspects. (See enclosed from the Learning Exchange bulletin.)

Last year's seminar was well attended and well received. As well as being informative and useful, it is a good way to meet him, as he is available in his practice for counseling and for disability representation. He is also, of his own accord, donating part of the proceeds to the Calif. CFIDS Association. The Learning Exchange has agreed to drop the $7 registration fee, as well as taking $5 off the price of admission for those who say they saw it in this newsletter!! I realize that $27 is still a bit steep for some of you, but it is three solid hours of quality information. I sincerely hope that you are able to either go, or send folks who need this information. You need to sign up through the Learning Exchange.... See enclosed copy of the registration form. Hope to see you there!!

Other Upcoming CCCA Meetings

Wed. April 7, 6 - 7 PM Newcomer/Share Meeting
Sat. May 8, 1 - 3 PM Group Meeting
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 fl. conference room, 3160 Folsom Blvd. (at Alhambra), Sacramento.


Notes From Recent Meetings

At the November meeting at the MedClinic, we had a speaker from the Health Rights Hotline. Dale Scott gave an interesting and very informative talk about the organization and how they are useful to those of us struggling with getting quality medical care.

The Health Rights Hotline is a non-profit, independent program that provides information to health care users. They are available by phone, and familiar with all of the various types of medical care coverage - HMO, PPO, Medicare, Medi-Cal, private insurers, medi-gap, Kaiser, and others. They are willing and able to discuss your problems, concerns and questions about how to negotiate the system you are in, how to appeal decisions they have made, what your rights are, what your responsibilities are, what their responsibilities are, and who and how to go about getting what you need.

Dr. Robert D. Tufft, MD, an Oakland internist has come across a new and emerging theory that deep seated bone infections, "oral maxillofacial infections", related to the teeth and jaw may be a cause of many of the symptoms experienced by PWCs and/or FMS. These infections may be caused by chronic sinusitis, dental work, trauma and accident injury to the face and/or head. Symptomology can include unexplained head and/or facial pain (including earaches, TMJ, migraines, headaches or lymph glands) with or without sudden dental problems, immune dysfunction and neurological symptoms. Dr. Tufft is one of seven doctors researching this throughout the country (their paper is due out in early

1999). If your physician or dentist wants to contact Dr Tufft: 2930 McClure St., Suite 5, Oakland, CA 94609, 510-444-2155

They are experts on the system of medical care, they are not a medical information hotline. The hotline is a real boon to us with CFIDS, because they will help us to get through the "brain-fog" of trying to deal with the rules and small type of our policies. Occasionally, when warranted, they will even go to bat for you as an advocate to get your provider to provide your care.

Dale Scott was delightful, interesting and full of useful information. He answered questions from those present with patience and a good understanding of CFIDS and our needs. If you can use this service, call (916) 551-2100 or toll free (888) 354-4474. Keep this number handy - maybe write in near your doctor's number or in the front of the phone book - in case you run into trouble with your provider in the future. They will also send you a brochure if you call and request one.

At the January meeting, we had the pleasure of listening to Reggie Pruitt from InfoLine Sacramento. InfoLine is also a telephone service, providing information about some 1,800 services available in the Sacramento region, including senior programs, low-cost housing, children's services, health care, financial assistance, education, job training and more. In addition, InfoLine Sacramento offers a Disaster Reassurance Registry for seniors who wish to receive a "check-up call" from InfoLine in the event of a disaster.

InfoLine’s number is (916) 498-1000. They are open Monday through Friday 8:30 until 4:45pm. Reggie was very interested in helping us, and is familiar with the needs of folks in our circumstances, and assures us the phone counselors are committed to being as helpful as possible in referring callers to the resources they can use. It was a fun and informative meeting!


Group News

Welcome
We are so pleased and happy to welcome two new volunteers to our group. Kim Wielinski is a well person whose little sister, who lives in Minnesota, was stricken with CFIDS. Kim graciously decided to give us of her time as a way to help her sister's cause. She is now doing the newsletter and keeping the mailing list as well as getting deeply involved in designing and entering our upcoming website.

Steele Colby comes to us also as a well person, but who had an eight month bout with Cytomegalovirus that left him with a deep appreciation for what we all go through. Steele is very interested in advocacy and has great ideas for getting the word out to the political and medical world. He will hopefully also become a regular at the meetings and will help to coordinate speakers in the future.

Another big plus is the return of one of our own to the volunteer group. Mariley Vigh was too ill for quite a while to answer the calls that came in to the hotline, and the work was done for a while by Marsha Ballard. Marsha became well enough to begin working part-time, and Mariley has become well enough to do the hotline again! So, once again, those who call the hotline for information or updates on the meetings will be called back by the cheerful voice of Mariley! Thanks to both of them for doing a job so vital to so many.

Please send a thought of gratitude to these folks, and send out the wish that we find a few more in the near future to help make this group the support and advocacy voice we all want it to be! Please let us know if you, or anyone you can think of in your or your family's circle, might wish to serve on the Board of Directors or just to help out at meetings or on the endless phone calls that keep this group functioning. Thanks!
-JW

Small Groups Coordinator
Some people had mentioned interest in a more informal group setting. If you are interested in joining a small neighborhood support group, call Anna St. Claire at 916-394-0515.

CA Capitol CFIDS Assn (CCCA) Board
CCCA Board Members are looking for people to fill the positions of President and Secretary. If you can handle taking light notes at a board meeting that meets quarterly, please call 916-484-3788. Positions can be shared

CCCA Online
We hope to have our website, or at least a basic site, up and running by the end of March. The URL will be http://www.skdesigns.com/ccca. We also hope to put together an email list to send out quick alerts, if necessary. If you would like to be on the list, please send the request to us at ccca@skdesigns.com.

CFIDS Library
To provide better access, the CFIDS Library has been moved to the Sutter Resource Library, located in the Sutter Cancer Center at 2800 L Street, Floor 5, Sacramento. They are open Monday through Friday from from 10-5. In addition to our items, they provide access to all the medical journals and to the Internet for further research. Library membership allows for discount prices on different services. Call 916-733-3880 for more information.

Reminder
January was dues paying month! The date following your name on the mailing label is your expiration date. Please help us help you by paying your yearly dues ($10). Thank you!


CFIDS EDUCATIONAL Material

Chronic Fatigue Syndrome: A Primer for Physicians & Allied Health Professionals ... an outstanding educational tool for our doctors. $5.00 each. Order from: Mass. CFIDS Assn, 808 Main St., Waltham, Mass. 02154, Phone 617-893-4415

CFIDS Grand Rounds Video, all new & updated! Diagnosis and Treatment of Chronic Fatigue Immune Dysfunction Syndrome. Outstanding training tool for the medical community. Cost: lndividuals (not medical): $29.95 plus shipping. lnstitutions/Corporations/Medical Professionals: $99.95 plus shipping. To order, call CFIDS resource # 704-365-2343.

When Pain Won’t Go Away: The Relief Book For Fibromyalgia and Chronic Muscle Pain by Gayle Backstrom with Dr. Bernard R. Rubin, September 1998. ...from the perspective of someone who lives with fibromyalgia, covers the gamut of exercise, diet, drugs, and emotional considerations, allowing anyone with this condition to strive for the best in life. $12.95 (paperback). Taylor Publishing Company, 1550 W. Mockingbird Lane, Dallas, TX 75235, 214-819-8100.

"CFS/CFIDS Physicians Information packet"
Order a FREE packet for your doctor. Call:
CFIDS Association: 800-442-3437
National Institute of Health: 301-496-571 7

Compassionate Supply Programs for medications are available. The Pharmaceutical Research & Manufacturers of America (PHRMA) ... Write for: 1998 Directory of Prescription Drug Patient Assistance Programs, PHRMA, PO Box 29075, Phoenix, AZ 85038-8663
Other companies not listed in this directory offer programs as well... Look in the latest PDR, or ask your doctor or local pharmacist.

Diflucan HOTLINE: 1-800-869-9979

For the CFIDS Physician...
"Journal of CHRONIC FATIGUE SYNDROME"
Multidisciplinary innovations in research, theory & practice in CFS. Co-Editors: Nancy Klimas, MD, and Roberto Patarca, MD, PhD. 
Subscription rate: Individual:$36, Institutions: $60, Libraries: $75. The Haworth Medical Press, 10 Alice St. Binghamton, NY 13904-1580, 1-800-342-9678, Fax: 1-800-895-0582

Social Security Disability
We are no longer providing Social Security packets, mostly because we don't have the resources to keep updated with all the changes. A much better resource already exists through The CFIDS Association of America, who publish two very helpful items. Please order directly from them: Call: the Resource Line (704) 365-2343, Fax: (704) 365-9755, or write: The CFIDS Assoc. of America, PO Box 22398, Charlotte, NC 28222-0398

Item # 3060 - $20.00 Disability Workbook For Social Security Applicants by Douglas Smith, Atty. Physicians' Disability Services, Fourth Edition, 1997. (152 pages) Written by a successful disability attorney, this book guides disabled people through the process of applying for Social Security Disability Insurance benefits.

Item # 6030 - $8.00 Disability Packet (59 pages). Includes Chronicle articles about disability benefits and helpful advice for persons with CFIDS applying for Social Security Disability Insurance benefits.


Additional Information

Great News For CFIDS In California
Due to intense lobbying by George Fricke, MD and others, the Medical Board of California in January sent out a two-page action report about CFS as a biologically caused disease to all licensed physicians in the state. The Medical Board of California is the governmental agency empowered to grant and revoke physicians a license to practice.

A consumer action group is working on bringing a bill before the state legislature that would insure a physician’s right to offer alternative treatment with full disclosure of the risks and rewards, if it is not any more risky than traditional treatment. Those interested in the progress of this can contact Frank Cuny at 530-534-9758.

Since the board has responded to Dr. Fricke’s plea by sending an action report to all licensed physicians in the state, we should all write the Board and commend them for their action, however tentative it may be. We should also urge them to follow up periodically with better data. The Board can be reached at: Medical Board of California, 1426 Howe Avenue, Suite. 54, Sacramento, CA 95825, phone: 916-263-2389, or fax: 916-2263-2387.

Dr. Fricke points out that with the change in administration in Sacramento, now is an opportune time to re-double our efforts to effect change. Your phone calls, petition signatures, etc. do make a difference between our illnesses remaining outcast "orphans" or becoming known and treated by a majority of doctors.

Now is also a good time to complain to the state medical board if a physician refused to treat you. Every physician has been informed. There are no excuses for doctors not to be giving reasonable treatment.

CFS Far More Common than AIDS, HIV Infection or Lung Cancer
Cambridge, Mass., October 10, 1998 - In a study to be released today, US Centers for Disease Control and Prevention (CDC) researchers have found that chronic fatigue syndrome (CFS) (CFS is also known as chronic fatigue and immune dysfunction syndrome (CFIDS) and myalgic encelphalomyelitis (M.E.)) is a far greater public health problem than previously known.

This study, the most extensive of its kind, estimated the overall prevalence of CFS at 183 cases per 100,000 in persons ages 18-69. As in other studies, the highest rates of CFS were found among Caucasian women, in which the prevalence nearly doubled to 340 per 100,000. In women overall, the prevalence was 303 per 100,000; in men overall, 53 per 100,000. Dr. William C. Reeves, chief of the CDC branch responsible for the study, stated, "This study indicates that CFS affects women and men of all racial and ethnic groups, as well as adolescents. However, white women have the greatest risk for disease and this must be taken into account in planning allocation of health resources and searching for risk factors."

By examining the prevalence of other common women's diseases, the CDC researchers concluded that CFS is a serious women's public health concern. "To put this into perspective, CFS is three times more common than HIV infection in women (125/100,000), 25 times the rate of AIDS among women (12/100,000), and is considerably higher than a woman's lifetime risk of getting lung cancer (63/100,000)," Reeves said.

This study was unique in that nearly 25% of the population of Sedgwick County, Kansas was surveyed and full medical evaluations were performed on those who reported the symptoms of CFS by telephone interview. Sedgwick County (Wichita) was chosen because of its demographic similarity to the US as a whole. Few of the patients identified as having CFS carried that diagnosis already and most were not under the care of a physician. This finding helps explain tile differences between tile rates of CFS reported in this study and earlier CDC estimates that resulted from surveying physicians about the number of CFS patients in their practices.

The current CFS definition (Fukuda K, et al: "CFS: A Comprehensive Approach to its Definition and Study," Annals of Internal Medicine, 12/15/94.) requires that all other possible causes of the symptoms are excluded before the diagnosis is made. All persons who met the case definition for CFS, but also had any lifetime history of melancholic depression were excluded - even if that depression occurred years before the onset of CFS or resulted from the stresses of having a chronic, disabling illness. When persons with melancholic depression and CFS were included in the numbers, the rates jumped to 248 per 100,000 overall; 404 per 100,000 in women of all races; and 458 per 100,000 in white women. According to Dr. Reeves, "We're looking at the exclusion for melancholic depression much more closely now. Further understanding of these data will allow us to make recommendations about future case definitions."

Data from this study were presented Oct. 10 at Tile American Association for Chronic Fatigue Syndrome international research conference and again Oct. 13 at Tile U.S. Department of Health and Human Services Chronic Fatigue Syndrome Coordinating Committee meeting. Both meetings were held in Cambridge, Mass.

Symptoms of CFS include debilitating fatigue, impairment of short-term memory or concentration, tender lymph nodes, muscle and joint pain, headaches, unrefreshing sleep,  muscle and joint pain, headaches, and fatigue lasting more than 24 hours following exertion. To be diagnosed with CFS, a person must have had these symptoms for more than six months and cannot have any other medical explanation for them. Many CFS patients are unable to continue holding jobs, attending school or caring for family members because of the disease.

For inquiries about CFS, please call the CFIDS Association of America at PO Box 220398 , Charlotte, NC 28222-0398, 800-442-3437, Fax: 704/365-9755, E-mail: info@cfids.org or on the Internet at www.cfids.org.

Misrepresentation Of CFS
Al Franken, "Saturday Night Live" writer and actor and author of Rush Limbaugh is a Big Fat Idiot, is on a media tour to promote his new satire, Why Not Me? In this book, Franken is elected president, but is unable to serve because he becomes extremely depressed following a series of blunders during his inauguration. Rather than tell the American people that "President Franken" is severely depressed, his political advisors decide to say that he suffers from "chronic fatigue syndrome" - a "very real disease that's physical in nature" but is "100% curable."

However, during his media appearances (on the "Today Show," "Late Night with David Letterman" and other programs) and on the book's jacket, Mr. Franken has been joking that "President Franken" gets "chronic fatigue syndrome," which is "the same thing as depression." It is important that Mr. Franken learn that mocking people who have a very serious illness is not funny. That's why the CFIDS community's help is so important!

Mr. Franken's publicist at Delacorte Press said that letters will be forwarded directly to him.

Suggestions for Writing:

Points to Consider...


Disability Lawyers
Many of you ask us for the name of a disability lawyer. We are not in a position to endorse, recommend or refer doctors or lawyers: we are a nonprofit group of volunteers and we have to be careful for legal reasons about what we say.

In group meetings and other avenues, names are sometimes mentioned that do seem to be worth passing on, so I will list two here with the understanding that it is not an endorsement, just a mention. The first is the name of a lawyer who is reported to be familiar with and interested in CFIDS disability cases, and seems to understand the brain-fog and other symptoms. His name is Bruce Hagel, 442-2952. The other is the gentleman giving the talk on March 20th. He is wonderfully informed about the syndrome and also is a disability lawyer. His office is in Roseville, 641-2808.

Ninth Circuit Court Decision On CFIDS.
The U.S. Court of Appeals for the Ninth Circuit recently ruled that CFIDS can be a disabling condition. In the case Reddick v. Chater, (1998 WL 685798), the Administrative Law Judge (ALJ) had rejected disability on the basis of a diagnosis of CFIDS because the claimant went to aerobics once a week and later switched to an exercise bike.

The Appeals Court held that the ALJ erred by failing to account for the effects of persistent fatigue on the claimant's ability to work. It also held that once a claimant produces medical evidence of an underlying impairment, his testimony of fatigue cannot be rejected without 'clear and convincing reasons' for doing so.

The court found the claimant's activities were sporadic and punctuated with rest "Disability claimants should not be penalized for attempting to lead normal lives in the face of their limitations," the court ruled in sending the case back to the ALJ to award disability benefits.

Robert Alan Soltis, an attorney in San Diego who specializes in disability, said the ruling is especially significant for Californians, because it is the first Ninth Circuit decision on the issue of chronic fatigue syndrome.

The decision is available on the Findlaw web site http://laws.findlaw.com/9th/9715111.html.

Long-Term Effects On Schooling Being Studied.
Elizabeth G. Dowsett, a microbiologist, and Jane Colby, a former school principal, are beginning a new project to assess the long-term effects of CFIDS on education. They're looking for persons with CFIDS (PWCS) up to age 30 to fill out a questionnaire. Participants can remain anonymous. You may get a questionnaire through the Young Action Online web site, www.jafc.demon.co.uk/yaonline, or by writing to Jane Colby, PO Box 4347, Stock, Ingatestone, Essex, CM4 9TE, England.

Possible Wilson's Syndrome Tie-In
We have run across the name of a syndrome that might be something to check out for those of you with lower than normal body temperatures. If you take your temperature three times a day, three hours apart starting at least three hours after waking, sampling eight or nine days out of a three week period, and you find that it is always below 98.7 degrees, you might be a candidate for this additional diagnosis of Wilson's Syndrome. (Or if your temp is near normal occasionally, but you always feel better when it is.) Dr. Herman tells me there are at least two other syndromes named Wilson, but this one has to do with the thyroid functioning. It is not the same as other thyroid theories, however, please do not stop reading because you have talked about thyroid with other doctors.

Wilson has worked with hundreds of patients with a litany of symptoms that sound so much like our array, and claims that about 30% of them are candidates for this T4 therapy that he has discovered. It is NOT like any other thyroid medication (most of which address the T3 pathway), especially in that you don't take it forever, but only until the body temperature mechanism resets itself, and then you wean off the medication and you are off and sailing along. His theory, which he seems to have proven and is teaching to doctors as fast as he can, is that it is the low temperature itself that causes so many symptoms, but the place to fix the temperature is in this thyroid T4 pathway.

Unfortunately, it is not yet well known, and if you ask your regular doctor about it, you will likely get the standard understanding of the thyroid. Those of you with Web access can go to www.Wilsonssyndrome.com and get all the info on the syndrome. Others can call or write to ask for brochures about it: Wilson's Syndrome Foundation / PO Box 539 / Summerfield, FL 34492-0359 / (800) 621-7006.

They will provide the name of a nearby doctor (if there is one) who is trained in the diagnosis and treatment (for a fee), or I have given all the books to Dr. Herman in Roseville to see if he can treat some of his patients with the proper condition. If you think you are a candidate and can see him, please do so.

So, if this can help 30% of us, it's worth checking out!! Good Luck.

 

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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