Cfs1099 Imm Page8 10

The newsletter of the Chronic Fatigue Syndrome & Fibromyalgia Support Group of Dallas-Fort Worth Sponsored by Harris Methodist HEB Hospital Volume 1, October, 1999

SKEPTICAL OF SKEPTICS: A DOCTOR WITH CFIDS SPEAKS OUT Several years ago Tom English, MD, of Asheville, NC, wrote a letter about his experience as a CFIDS patient that was published in the highly prestigious Journal of the American Medical Association. It remains every bit as relevant and meaningful as the day he wrote it. The following is excerpted from his letter.

S “There is nothing you hold dear that this illness cannot take from you. Nothing.” IN THIS ISSUE

kepticism permeates our profession. It is ingrained during medical training and reinforced by professional experience... Healthy skepticism is the “in” attitude for intelligent, discriminating physicians. But healthy for whom? Four years ago I was diagnosed as having CFS. The experience has given me a new perspective of my profession, one that is not always flattering. In one early report the average CFS patient has previously consulted 16 different physicians. Most were told they were in perfect health, that they were depressed, or that they were under too much stress. Many were sent to psychiatrists. Is CFS a real disease? I believe it is, but I cannot settle that here. I would only plant this seed in the mind of skeptics: What if you are wrong? What are the consequences for your patients? Imagine for a moment that you are the Subjective patient, not the Objective physician. You catch a “cold” and thereafter the quality of your life is indelibly altered. You can’t think clearly. Sometimes it’s all you can do to read the newspaper or follow the plot of a television program. Jet lag without end. You inch along the fog-shrouded precipice of patient care, where once you walked with confidence. Myalgias wander about your body with no apparent pattern. Symptoms come and go, wax and wane. What is true today may be partially true tomorrow or totally false next week. You know that sounds flaky, but, dammit, it’s happening to you. continued on page 2

DOCTOR WITH CFIDS SPEAKS OUT MICHELLE AKERS: STILL KICKIN’

MICHELLE AKERS: STILL KICKIN’

GAO INVESTIGATION NAME CHANGE SURVEY FALSE CFS DEPICTION LET’S CHAT: RECOVERY FROM CFS TOXIC MERCURY ORAL ALPHA INTERFERON MONEY MATTERS INTERNET & DISABILITY RESOURCES CDC UPDATE ON CFS UPCOMING MEETINGS SPIRITUAL JOURNEYS GATHERINGS

M

any have called Michelle Akers the most talented soccer player in the world, male or female. However, her biggest challenge hasn’t been on the field. In 1991, just weeks after leading the U.S. team to its first World Cup title, she was struck with CFS. Overwhelmed with fatigue, migraines, depression, lack of balance, blurry vision, cognitive dysfunction, and difficulty sleeping, she felt like she was in hell. At her worst she could barely sit in a chair or stand in the shower. Simple chores could knock her out for days or weeks. She cut her training sessions drastically, finding that exercise totally wiped her out. She played as much as she could, often to the point of

collapse. Her teammates looked on in horror as she lay in a heap on the locker room floor while team doctors, consulting with Dr. Paul Cheney, pumped bags of IV nutrients into her ravaged body. Akers turned the corner in 1995 when she stopped fighting herself and her illness. She began Cheney’s treatment protocol, quit trying to do it all, and rediscovered her faith. She said, “OK, God. I’m giving you my wrecked body and life. Let’s see what you can do with it. And God turned my suffering into a blessing. CFIDS has enabled me to find out who I am. If it wasn’t for the darkness, I would never have seen the stars.” continued on page 2

TABLE OF CONTENTS

1

Doctor Speaks... continued from page 1

You are exhausted, yet you can sleep only two or three hours a night. You were a jogger who ran three miles regularly; now a walk around the block depletes your stamina. Strenuous exercise precipitates relapses that last weeks. There is nothing in your experience in medical school, residency, or practice with its grueling hours and sleep deprivation that even approaches the fatigue you feel with this illness. “Fatigue” is the most pathetically inadequate term.

“This is no illness for cookbook doctors. It is a disease for medical

I have talked with scores of fellow patients who went to our profession for help, but who came away humiliated, angry and afraid. Their bodies told them they were physically ill, but the psychospeculation of their physicians was only frightening and infuriating—not reassuring. It told them that their doctors had little understanding of the real problem. Many patients had depleted themselves financially, dragging in vain through expensive series of tests and consultants as their lives crumbled around them. They had lost careers, homes, families, in addition to the loss of stamina and cognitive skills. There is nothing you hold dear that this illness cannot take from you. Nothing.

intellectuals with supple and open minds.”

Are we to believe that just because symptoms are strange and unfamiliar they cannot be real? Are we to assume that our laboratory tests are capable of screening for new diseases as well as old? Distrust of new ideas is as old as humankind; so are the harmful consequences of that distrust. The doctrines of Lister and Semmelweis were not generally accepted for more than 50 years. I shudder to think of the death and misery caused by the skeptics during that half-century. Internists have long prided themselves on incisive intellects and superior diagnostic skills. It is time for those skills to focus on the complex subtleties of this illness. I ask for your patience. CFS is sufficient indignity by itself; do not compound it. It takes considerable time and infinite patience to take an accurate history from a frail patient with impaired memory and concentration, especially if that history is long and complex. But if you take that time, you can do a world of good. CFS may frustrate you, but it is equally fascinating and rewarding. Resist the temptation of hurried, superficial evaluation. This is no illness for cookbook doctors. It is a disease for medical intellectuals with supple and open minds. Reprinted with permission from J.A.M.A. eb. 27, 1991, Vol. 265, No. 8, p.964 copyright 1991, American Medical Association.

esearchers obtained startling results from the largest epidemiology study of Fibromyalgia ever done. They surveyed 3500 residents and found that FM afflicts one of every 20 women and one of every 60 men, which is substantially more than researchers believed based on clinic visits. Among older women, the indicence spikes to almost one in 10 persons having the often painful and debilitating disease. The most disturbing fact was that three quarters of people with FM didn’t know they 2

On July 11, the US women’s soccer team won the World Cup, and Reuters named Akers the “most outstanding player of the tournament.” Links to Michelle’s CFIDS website, www.michelleakers.com/cfids.html, and detailed news stories can be found at www.cais.net/cfs-news/news.htm. Thanks to Roger Burns and CFS-News for this information.

GAO INVESTIGATES CFS PROGRAMS

A

s a result of the Inspector General’s audit that determined the CDC diverted $12.9 million of the $22.7 million designated for CFS research, the General Accounting Office will be exploring in more detail the CFS programs at both the CDC and the NIH. The CDC director stated that nearly $9 million dollars will be restored to the CFS program over the next four years. Kim Kenney, Executive Director of the CFIDS Association of America, is concerned that the CDC plan doesn’t go far enough. The Chronic Fatigue Syndrome Coordinating Committee is recommending to Donna Shalala, Secretary of Health and Human Services, that the full $12.9 million be restored, that the funds be used for public service announcements and education of primary care providers, and that a thorough review of the CDC and NIH research be conducted. From The CFIDS Association of America; to read this media coverage, click on “recent media coverage” at www.cfids.org.

FM STUDY IN CANADA

R

Akers... continued from page 1

had it but had suffered for an average of 11 years. The head of the study, epidemiologist, Kevin White, said, “It is not a fake illness, there is something real here.” He noted that the illness is “poorly understood” and most patients have been told, “it’s stress” or “you’re just working too hard.” The study also showed that half of those sampled have frequent fatigue and in 21% of cases, it significantly limited activity. Two articles on the study were published in the July issue of the Journal of Rheumatology.

NERVE GROWTH

A

s reported in the July Journal of Rheumatology 1999 Jul; 26(7): 1564-9, the concentration of nerve growth factor in the cerebrospinal fluid of FM patients was significantly higher than in control subjects. This suggests a central mechanism, involving abnormalities in neuropeptides like nerve growth factor, may be a factor in the pathogenesis of Fibromyalgia.

WHAT’S IN A NAME? THE SURVEY What’s in a name? Plenty—when the subject is Chronic Fatigue Syndrome. According to Leonard Jason, a DePaul University professor who recently conducted a study on the topic, a name change would result in CFS being taken much more seriously. One hundred five medical trainees—half students, half residents—in either family practice or psychiatry were randomly assigned to one of three groups. Each group reviewed the same case study of a patient with classic CFS symptoms. The only difference was the name ascribed to the illness. It was described as Chronic Fatigue Syndrome (CFS), Myalgic Encephalopathy (ME), and Florence Nightingale disease (FN). The latter two, ME and FN, are frequently suggested as alternative names for CFS. ME is a slight variation of a name already in use by some in Great Britain, Australia, and New Zealand while FN is named after the famous nurse, Florence Nightingale, who was homebound for the last thirty years of her life with symptoms matching CFS. Her birthday, May 12, has been named International Awareness Day for CFS.

WHAT TRAINEES THINK Each study group was questioned pertaining to the patient and the illness. When asked about prognosis, 42% of the FN group and 41% of the CFS group believed the patient would improve within two years. Only 16% of the ME group thought improvement

within two years likely. When asked about cause, 39% of the ME group attributed it to medical causes, compared to 30% of the FN group and 22% of the CFS group. When asked about treatment, 67% of the CFS group said they would include psychiatric intervention, compared to 53% of the FN group and 48% of the ME group. Some questions elicited similar responses from all three study groups. Only 3% of the entire group thought the patient was malingering. 67% described the illness as severe; 57% rated the patient as severely disabled; 43% felt the illness was stressrelated and 37% felt the patient was suffering primarily from depression. Only 10% rated the cognitive impairment as severe and only 19% saw the pain as being severe. Psychiatric residents were less likely to think the patient was malingering and rated the quality of life as significantly worse compare to the medical students.

STUDY SUGGESTIONS The researcher believes the study suggests the following: ME is perceived as a more debilitating illness with biological underpinnings and, none of the names convey the severity of the cognitive impairment and pain that are part of the illness for so many. It also suggests that those in psychiatric residency programs may have more training and experience with complex disorders and thus are more willing to view such syndromes as serious, legitimate illnesses.

Many CFS activists argue that the current name adds to the invalidation and stigmatization process involved in the entire disease condition. Gay Related Infectious Disease became AIDS when very little was known about it. Multiple Sclerosis, historically known as “hysterical paralysis,” was once believed caused by stress linked with oedipal fixations. Name changes to other illnesses benefited the patients despite limited scientific information supporting name changes. Increasing scientific information supports a name change for Chronic Fatigue Syndrome. To create more medical legitimacy the name must change—which would consequently influence federal and state resources for research, prevention, and intervention–with the added benefit of improving patient care. It’s time to make a change! “Study Compares Medical Trainees’ Reactions to Three Names for CFS,” Leonard Jason, et al, July/August 1999, The CFIDS Chronicle; published by the CFIDS Association of America, 1.800.442.3437.

rld o W ’s Ka t t

The DFW Lighthouse Credits Published quarterly, the DFW Lighthouse strives to inform its members and the public about a variety of topics relating to Chronic Fatigue Syndrome and Fibromyalgia and provide information on advocacy issues. The CFS/FM Support Group of DFW is as a clearinghouse for information about Chronic Fatigue Syndrome and Fibromyalgia. The Support Group does not endorse particular products or services, and the ideas expressed in the DFW Lighthouse are strictly those of the authors or quoted individuals. The CFS/ FM Support Group of DFW, and the DFW Lighthouse assume no liability for any medical treatment or other activity undertaken by readers. For medical advice, consult your health-care provider. Managing Editor & Production Coordinator . . . . . . . . . . . . . . . . . . . . . . . . . Carol Sieverling, [email protected] Managing Editor & Designer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . LJ Fidler, [email protected] Technical Editor & Editorial Researcher . . . . . . . . . . . . . . . . . . . . . . . . . . . . Jackie Burns, [email protected] How to Contact Us: The CFS/FM Support Group of DFW is headed up by Carol Sieverling, 513 Janann Street, Euless, Texas 76039 817.283.1115. You can view the DFW Lighthouse online at: www.virtualhometown.com/dfwcfids. Submissions may be sent electronically to [email protected]. We reserve the right to edit all submissions. You must have permission before reproducing any material from the DFW Lighthouse; this may be obtained by writing Carol Sieverling at the abovelisted address. For any computer-related problems or services, design, layout, editing or writing services (preferably for hire, but pro-bono services will be considered), please contact LJ Fidler at [email protected]. Copyright © 1999 by The CFS/FM Support Group of DFW. All rights reserved. Printed in the U.S.A.

Waking up is hard to do!

3

LET’S TALK! RECOVERY FROM CHRONIC FATIGUE SYNDROME

W

ebMD, www.webmd.com, uses internet chat to provide information about CFS and a variety of other medical topics. William Collinge, M.P.H., Ph.D., and Abigail Platt Collinge, NCPsyA, shared their thoughts about Chronic Fatigue Syndrome recovery in this chat session. Cofounders of the Intimacy & Healing Project, a program for couples whose relationship is touched by chronic illness, they are well qualified to address this topic. After seven years of living with CFIDS, Abigail now leads a full life that includes jogging. Visit the WebMD site for the full transcript from this July 7, 1999 chat session at my.webmd.com/member/ 524107 or the Collinge’s website at www.healthy.net/collinge. The excerpted quotes from this chat follow.

FALSE CFS DEPICTION

lifestyle changes that promote and support the body’s own healing process. Some medications effectively treat symptoms but none are curative of the syndrome itself. The most effective approach from a medical point of view is integrative medicine. Conventional medicine is used for some of the symptoms while herbal medicine is used to strengthen and support the body’s healing. A study I conducted found that CFS patients who practiced some form of meditation at least three times per week were three to four times more likely to improve after one year than patients who didn’t have such a practice.

SPIRITUAL

PERSPECTIVE

Focus on the moment and take it one day at a time. Remind yourself that these are symptoms of the syndrome that will pass. Have a daily practice, like meditation or prayer, that can help bring peace into your life. Focus on who you are as a human, rather than what you are or are not producing in the world.

Looking at things from a larger spiritual perspective is important in maintaining hope. We must ask ourselves, what is my body trying to tell me? What can I learn from this illness? We have to take a radical look at our lives, for example, assess which relationships are healthy, and which are toxic. Look within for resources, guidance, and healing rather than looking outside ourselves. One of the findings in the study I mentioned earlier was that the people who had very little social support did not improve no matter how much self-healing they used.

MAINTAINING HOPE

TRANSFORMATION

We have known many other CFS sufferers who were ill for up to 20 years and who now consider themselves recovered. We choose between hope and despair at any given moment. What helped was meeting one sufferer of CFIDS who had recovered. I kept this picture of her in my mind for many years; that picture kept me going. You do not need to know 100 people who have recovered. Just one.

I hesitate to use that word because it’s loaded. However, what we have observed in the people we worked with is that they are literally new people. Their recovery has been a process of discovering a new relationship to life and a new sense of self. It’s not desirable to pick up where you left off and go back into the way of life that existed before you became sick. There’s a real opportunity to start over on all levels.

COPING WITH FEAR & ANXIETY

DEFINING RECOVERY

SUPPORT

We aren’t talking about a naive vision of recovery in which symptoms are gone forever. Recovery is a sense of integrity and control of your life combined with effective management of symptoms so they no longer control you.

It’s important to connect with others with CFS because it validates your experience. It lets you know that you aren’t crazy, this is a real disease, and you aren’t alone. On the other hand, you must be discerning because some people with CFS don’t believe recovery is

TREATMENT CFS is best treated through self-healing practices and 4

“...don’t wait until you get better. Do what you love.”

continued on page 5

I

n the new movie “Mumford” a young woman is miraculously cured of CFS with exercise and analysis. This frustrating travesty is one more example of the lack of knowledge the general public has about CFS. Such movies only reinforce common misconceptions. We can’t change or stop this movie, however, by voicing our displeasure perhaps we can stop future movies from including such false portrayls of CFS. Directed by Lawrence Kasdan, the movie stars Jane Adams, Martin Short, Ted Danson, Hope Davis, Loren Dean, and Jason Lee. Feedback about the depiction of CFS in the movie “Mumford” can be sent to several places. The official web site, movies.go.com/mumford/index.html, includes a feedback link. Quoted reviewers on the site are Roger Ebert, www.suntimes.com/geninfo/feedback.html and Larry King, whose movie review is at www.usatoday.com/life/columns/lking.htm. He can be reached at: USA TODAY Information Network, 1000 Wilson Blvd., 22nd floor, Arlington, VA 22229. Yahoo! also has a feedback form on which you can post your review: movies.yahoo.com/movies/ guide/mumford.html. Another organization, Chronic Immune and Neurological Diseases Association, (CINDA) has a sample letter to send to the CDC at cinda.org. Just click on the ‘news’ button. The letter asks the CDC to take responsibility for their actions in giving us such a moronic name that stands up so well to ridicule. It also urges them to become more active in general public awareness. CINDA also suggests sending a copy of your letter to your elected officials in Washington, DC.

MERCK MANUAL NOW LISTS CFS

T

he Merck Manual of Diagnosis and Therapy, “the most widely used general medical textbook in the world,” now lists CFS among its hundreds of recognized diseases and conditions. Released on April 22, the Centennial Edition of the manual with the new CFS listing can be seen online at www.cais.net/ cfs-news/merck.htm. Thanks to Roger Burns and his publication CFS-News for this information.

CFS & CHINESE MEDICINE

T

wo doctors in China plan to conduct a research study of Chinese herbs in treating CFS. They believe CFS treatment has been palliative and can only relieve symptoms but cannot fundamentally eliminate fatigue. They propose that regulating homeostasis and enhancing immunity are important in CFS treatment and that many Chinese herbs do this.

Since Chinese herbs are cheap, simple, efficacious and safe, they expect to achieve good social and economic effects. This research proposal was published in the Journal of Chronic Fatigue Syndrome, Vol. 5, no. 1, 1999. Copies available from Haworth Document Delivery Service at 1.800.HAWORTH or [email protected].

MEMBERS’ ENGAGEMENT

G

reat excitement filled the room after our last meeting when Robb Rockel and Tricia Conboy announced their engagement. Robb and Tricia met through our support group just over a year ago. They credit our leader, Carol, with helping them connect, since she suggested that Robb contact Tricia. CFS disabled Robb in 1995 while he was attending college in Colorado. Tricia was attending college in Maryland when CFS struck and disabled her in 1996. Both had to return home and live with their parents, unable to work or continue their education. Fortunately, both families eventually moved to the metroplex. It’s thrilling to know our support group provided a place for them to meet, particularly when illness prevented other socializing. Robb was also recently awarded Social Security Disability for CFS on his first application.

ppy a h e h ns to t o i t a l atu ! Congr couple

CFS Recovery... continued from page 4

possible, and reinforce a sense of helplessness, hopelessness, and victimhood.

EXPECTATIONS Realistic expectations are important so you don’t set yourself up for failure and disappointment. Take baby steps. Go for quality rather than quantity. There was a time when I was so sick I couldn’t work; I couldn’t get out of bed; I couldn’t balance my own checkbook; I couldn’t feed my 2 year-old son; and, I was a single mother at the time. On those days, I had to remind myself that it was a good day if I could just wake up, breathe, and go to sleep. People must ask themselves what they feel passionate about. What makes your heart sing even under these extraordinarily challenging conditions? Find meaning and purpose even when you are in pain, debilitated and feeling despair. Even in those moments, ask yourself what would lift your heart in this moment. Whether it’s looking at the face of your child, enjoying a sunset or prayer; don’t wait until you get better. Do the things you love.

CHANCE OF RECOVERY It’s a mystery. Some people do all the right things but don’t get well. Others do all the wrong things and still get well. It’s impossible to say how much is a matter of a genetic vulnerability, environmental toxins, pathogens, stress, and the many other factors that contribute to CFS. However, we still believe that, to the extent a you take seriously the challenge of leading a healthpromoting lifestyle and look within to your internal healing resources, your chances of recovery are much better.

ROLE OF THE CAREGIVER The well partner or caregiver also has pain and suffering of their own and must acknowledge it within themselves and to the sufferer. There must be a great deal of honest communication as to each person’s needs and limitations. This communication can result in a growing sense of intimacy between both parties that is, by itself, healing. To be a caregiver of a person with CFS is one of the most difficult and challenging roles. That’s why I lost my first marriage. The stress of this illness so few people comprehend was too much. If he could have come to terms with his own needs, pain, and feelings about illness, and then talked with me, perhaps we could have weathered the storm of CFS. Above all, a caregiver must listen and offer encouragement while not being attached to any particular outcome. This is a delicate balance and the sufferer must have compassion for the caregiver as well.

RESEARCH BREAKTHROUGH

A

major scientific discovery relating to the sleep process has been made; researchers found a light-sensing protein known as cryptochrome that works with other proteins to regulate the ebb and flow of the body clock. If a way to apply the discovery can be found, it may be possible to reset the body clock quickly to various phases using crytochrome. Published in the journal, Cell, and picked up by Reuters, this study was posted on Co-Cure.

PETITION FOR EXPANDED GAO INVESTIGATION

A

group of CFIDS patients are circulating a petition requesting that the GAO investigate the issue of scientific bias against CFS at the CDC and NIH. At the end of July, a GAO official stated that they had no plans to investigate the issue of scientific bias. There is concern that such bias has affected the design and scope of epidemiological studies, the formulation of the case definitions, and led to the

funding of research that emphasizes a psychiatric etiology of CFS. A copy of the petition can be seen at www.co-cure.org/gao.htm. This is an easy way you can help encourage the GAO to continue to investigate. You can print it off, sign it, and mail it in to the organizers, who will present it to the General Accounting Office. Upon request, Carol will mail you a copy. Make your voice heard! 5

INTERNATIONAL CFS CONFERENCES

MEDIA BITES

R

esearchers and clinicians from around the world met in Sydney, Australia in February this year to share the latest information about Chronic Fatigue Syndrome. A variety of topics were covered including mycoplasma infections, stealth viruses, neurological mechanisms, coxeilla burnetii, biochemical abnormalities, case studies, predicting disability, immune activation, chronic pain, and dysautonomia. Conference abstracts can be seen at www.ahmf.org.

The efforts of our local support group were featured in an article on page 23 of the July/ August CFIDS Chronicle; four of the quilt squares on the cover came from our group.

The Second World Congress on CFS was held in Brussels, Belgium in September this year. The program was scheduled to included information on epidemiology, clinical observations, diagnosis, treatment, related disorders, disability, and creating a world organization. The scientific committee included researchers and clinicians from the United Kingdom, the United States, Japan, France, Australia, and Italy. Information on the conference can be found at www.cfs-clinic.com.

The Irving Community Cable Channel aired a story about CFS and Dr. Cheney’s seminar.

NEW FM DISABILITY TEST

TOXIC MERCURY

A

T

Insurers are evaluating the test as a way to appropriately direct the flow of disability dollars. About 15% of FM patients are considered partially or wholly disabled by conventional criteria. The test is also being used to assess disability in patients with “fatigue and malaise.” If anyone has personal experience and wants to share the results, please contact Carol.

CDC RETALIATION

D

r. William Reeves, [email protected], claims that since questioning the CFS budget in 1997, he has received less favorable evaluations, been denied pay raises, and received an undeserved formal reprimand. He also says management is blocking his efforts to fill an essential staff position on his team. He recently filed a complaint charging the CDC with violating the Whistleblower Protection Act. He is asking the Office of Special Counsel to back his effort to cleanse his record, restore his staff levels and award him $300,000 damages. If you want to add support, send letters to Dr. Donna Shalala, Secretary of Health and Human Services, 200 Independence Ave., SW, Washington DC 20201. 6

D

The Washington Post ran two stories related to the CDC scandal, one on July 21, and another on August 6.

D

Both of the above came from Co-Cure.

ccuMed, www.accumedsystems.com. an Atlanta-based mobile diagnostics telemedicine company, announced a new diagnostic test to assess disability in FM patients. AccuMed says their cardiopulmonary exercise test provides “a true, objective metabolic measurement of effort, allowing the physician to conclude if the patient is wholly, partially, or in no way disabled from a functional standpoint.”

D

he CFS Radio Show recently interviewed Professor Boyd E. Haley, Chairman, Department Of Chemistry at the University of Kentucky. Professor Haley spoke about the dangers of amalgam fillings from the mercury they contain and the systemic damage they can cause to people with immune-suppressed systems. A transcript can be found at members.aol.com/ rgm1/private/transcr.htm. Thanks, Carolyn Vivani, for transcribing the interview and posting it to Co-Cure.

MEETING TAPES

V

ideotape copies of Dr. Cheney’s May seminar are still available. We’ve sold almost 250! Audio cassettes of the following meetings are available: ❏ Kim Kenney, Executive Director of The CFIDS Association of America speaks about CFIDS Education, Advocacy & Research ❏ Rev. Pam Douglas Smith explores our spiritual journey through the characters and story of The Wizard of Oz ❏ Dr. Jay Seastrunk speaks about CFS and the brain, cognitive testing by SPECT, MRI and MRS, and treatment with nerontin ❏ Frankie Burget explains myofascial release ❏ Carol Sieverling explores chronic illness and spirituality ❏ Nancy Didriksen, clinical psychologist, explores healing, coping and resolving issues. To order either videotape or a cassette, mail a check for $3.00 per cassette or $15 per videotape, made out to Carol Sieverling along with the list of what you want and your mailing address.

The Dallas Morning News ran a story on Michelle Akers and CFS on September 20 in the Health & Fitness Section.

D

Parade Magazine featured a good article on FM in the July 18 Sunday paper.

D

CNN did a good story about a woman living with FM; read it at www.cnn.com/ HEALTH/women/9908/03/fibromyalgia.

NEW STAFF Hi there! I’m LJ Fidler (Lori) and I’m helping Carol reshape the newsletter. I’ve had about 10 years experience producing a variety of printed materials. I’ve had CFS for about 10 years now. It took five years, a variety of doctors, and a lot of research before I finally discovered the correct medical “label” and got a diagnosis. Since I was laid off from IBM, I’ve been trying to start a computer-related business. Needless to say, with the illness that’s been extremely difficult despite previously starting and maintaining two other businesses prior to getting sick. Meanwhile, I’m excited to work with Carol in reshaping the newsletter with a new look and style. While this work is most exhausting, I do love it and I hope you all love the results! As with most things, it’s an ongoing process! Enjoy the new look and I welcome all constructive comments! Hugs!

ORAL ALPHA INTERFERON

MONEY MATTERS!

M

CLINIC OF ANGELS

any FM and CFS patients trying alpha interferon report significant improvement. Now, more medical evidence is available. The entire issue of the August 1999 Journal of Interferon and Cytokine Research, www. liebertonline.com, focuses on oral interferon. Included are literature reviews, articles on the mechanism of action, and human trials. Two articles concern studies by Dr. Jon Russell in San Antonio using the oral lozenges (made by Amarillo Biosciences, www.amarbio.com). One prominent CFIDS activist experiencing great improvement states that patients who are improving are taking three–four doses a day, however, the optimum dose varies from person to person. The publisher can be contacted by email, [email protected]; phone 914.834.3100; or, fax 914.834.3688.

INTERNET RESOURCES Three new discussion lists are available to the CFS/FM community. For women who are or want to be pregnant, go to www. onelist.com/subscribe/CFIDSorFMS pregnant. For advocacy about CFS/FM/FM/ MCS/GWI, a new list has formed. To subscribe, send a blank email to cfsadvocacysubscribe@egroups. com or go to www. egroups.com/list/cfsadvocacy/info.html. For announcements and updates from the CFIDS Association of America, send an email to [email protected] stating you’re a DFW support group member and want to subscribe to the cfids-support-net. Newsgroups range from very positive to quite negative or divisive; most newsgroups go through all ranges eventually. Just take what you need and ignore the rest. Here are some informative sites to consider: www.execpc.com/~keephope/v1999.html, a summary of antiviral HHV6 therapies; the University of Newcastle in Australia is doing cutting edge CFS research. Their Collaborative Pain Research Unit and Bioscreen Education Service website, www.users. bigpond.net.au/info-cfs_newcastle. htmindex.html, describes their research. Miryam Ehrlich Williamson, www. mwilliamson.com, author of “The Fibromyalgia Relief Book” and “Fibromyalgia: A Comprehensive Approach” spoke on WebMD chat entitled “FMS: Managing Chronic Pain.” The transcript is at my.webmd.com/ member/527508.

The Clinic of Angels, www.geocities.com/ HotSprings/Chalet/1835, a nonprofit organization, provides funds to financially strapped members of the CFS/FM community so they can receive treatment and prescribed medications. Board members validate and prioritize medical treatment requests and negotiate with specialists. They also negotiate with mail-order pharmacies for medications. To donate funds or request help, write to: Clinic of Angels, 5100 Burchette Road, Suite 1003, Tampa, FL 33647.

D

FINANCIAL HELP Need help paying those out-of-pocket expenses for Medicare or Medicaid? The Health Care Financing Administration offers four programs with varying levels of help, based on your situation. For more information see www.hcfa.gov/medicaid/obs4.htm or contact your state, county, or local medical assistance office. Check your telephone directory for the office nearest you, listed under Medicaid, Social Services, Medical Assistance, Public Assistance, or Human Services. Alternatively, call HCFA at 1.800.638.6833.

D

PRESCRIPTION ASSISTANCE Many drug manufacturers provide free and/ or low-cost prescriptions to those who qualify. See www.institute-dc.org for a list of drugs, companies, and contact information. You can also order the booklet (#PD370) from: The Institute, Capitol Hill Office, 611 Pennsylvania Avenue SE #1010, Washington DC 20003-4303.

D

LOW-COST SUPPLEMENTS In addition to the discount companies already mentioned in previous newsletters (Shaklee Products at cost, Mary, 817.481.4056; Vitamin Discount Connection, 1.800.848.2990; NEEDS, 1.800.634.1380; and, Health Net, 1.888.787.7536), several others have come to our attention. A London-based firm, Quality Health, Inc., carries an extensive listing of vitamins and supplements, as well as “smart drugs” often not available in the US. See www.qhi.co.uk or fax them at 44.171.580.2043. For major discounts on a few select products, see www.seaquake.com/ bulk.htm. Discount supplements are also

available at American Nutrition, at 1.800.454.3724 or www.americannutrition.com. The Boston Buyer’s Club also offers discounts, www.bgladco.com/bbc or 1.800.435.5586. Many thanks to the members who sent this information.

D

FREE INTERNET SERVICE Do you want to connect to the internet and access all the incredible information and resources online? When you have a free introductory month from one of the many services that make such free offers, check out www.netzero.com. It provides free internet service. An alternative, Juno, www.juno.com, offers free basic internet email for anyone who can access one of their many access numbers. Call 1.800.TRY.JUNO for information. Remember—no guarantees—your mileage may vary!

DISABILITY RESOURCES

I

f disability is or could become a concern, information is a powerful weapon. Some internet websites may interest you: www.cfids.org/disability.html or www.cfidsme.org/disinissues for information, links, a good lawyer list, and an email discussion group with others going through the disability process. The Department of Health and Human Resources recently established the first-ever federal resource center for women with disabilities as part of the National Women’s Health Information Center—a gateway to federal and private sector women’s health publications and organizations. For more information, call 1.800.994.WOMAN or go to www.4women.gov. The National Organization of Social Security Claimants’ Representatives website, www. nosscr.org has resource information and answers to frequently asked questions. The Social Security Advisory Service, www. ssas.com, allows you to ask questions at the site. 7

ONE TO ONE A single mother on long-term disability for CFS has just been turned down on her first application for SSDI. Her children also have health problems and huge medical expenses. If anyone knows of breaks on utilities in the DFW area for the disabled or other assistance programs, please contact Carol.

❖ Stephen, [email protected], reports that before beginning his protocol, he could only work less than ten hours weekly. Now he can work an average of 30 hours a week. Over time, his protocol has built to include a multitude of both drugs and nutritional supplements. Since viewing the tape of Dr. Cheney’s seminar he has begun Immunocal, Ultra Clear Sustain, and hydroxycobalamin B-12 injections and s een noticeable improvement.

❖ Gloria reports that she is prone to GERD (gastroesophageal reflux disorder) and found that the drug Celbrex exacerbated it. Others prone to GERD may want to use cox-2 inhibitors with caution.

STORIES & PHOTOS NEEDED benefits for people who have gained weight, have sore throats after exertion, have frequent tender lymph nodes in the neck area, perspire a lot, and their perspiration is unusually salty. He offers products at drastically reduced prices at www.seaquake.com/bulk.html. Dave is a very well read patient, not a medical practitioner.

Chronic Relief is a new magazine for those with CFS, FM, chronic pain, and related illnesses. Information, including submission guidelines can be found at www.freeyellow. com/members7/chronic-relief/index.html or obtained by sending a business-sized SASE to: CRP, PO Box 1321, Tuscaloosa, AL 35403; or, call 205.752.3278.

HMO REFORM

One of our group members, Gaye Tindel, an RN, wants to publish a book from the perspective of a patient with medical experience. She requests any information members are willing to share including, personal story, disability issues, and similar topics. Contact Gaye at 120 Coury Road, Everman, Texas 76140, 817. 551.1971, or [email protected].

T

he Bipartisan Consensus Managed Care Improvement Act, H.R. 2723, which guarantees certain patients rights is in danger! If you want to make a difference with this bill, write your representative or visit the site www.patientadvocacy.org for a sample letter online. Representative information can be found at www.congress.org/elecmail.html.

CDC UPDATE ON CFS

❖ Carol, our group leader, is experiencing significant improvement on IMUPlus, a supplement recommended by Dr. Cheney. This product works to restore the detox pathway and antiviral/antimicrobial mechanisms. Available from NEEDS, 1.800.643.1380, it’s $82.50 + S/H for 60 packets. Although two packets daily are the recommended dose, Carol initially crashed on this amount. She dropped to half a pack, then very slowly upped the dose to two packs daily. She believes it has made more difference than any other treatment.

❖ Susanna reports that problems with your insurance company and their decisions regarding claims can be reported to the Texas Department of Insurance, www.tdi.state.tx.us, 333 Guadalupe Street, PO Box 149104, Austin, Texas 78714-9104, 512.463.6169.

❖ After years of FM, Patsy S. is now pain-free. She and others in her support group discovered that those who have ADD in addition to FM often respond remarkably to certain drugs. Her story is at www.addfibromyalgia.com or by contacting Carol.

❖ Dave Williams, [email protected], (945.946.5551) has had CFS for years but now considers himself fully recovered. He developed a protocol that has shown profound 8

F

rom August 1989 to November 1997, the Centers for Disease Control (CDC) followed one hundred fifty-five CFS patients. Patients with sudden onset of CFS reported significantly higher frequencies of sore throat, fever, tender lymph nodes, chills, difficulty thinking or concentrating, and depression than those patients with gradual onset of CFS. As the illness progressed, differences in symptoms between the two groups disappeared and the symptoms fluctuated. At the five-year mark, 31.4% of the patients had recovered. At the tenyear mark, 48.1% had recovered. In constrast to its earlier report, the CDC reports no difference in recovery rates for those with sudden versus gradual CFS onset. The study concludes that recovery can be reported at any time in the course of the illness, but is more likely to occur in the early years. The report calls for additional longitudinal studies describing the course of CFS, determining the recurrence of the illness over time, and predicting the occurrence of symptoms over time. Chronic Fatigue Syndrome Progression and Self-Defined Recovery: Evidence from the CDC Surveillance System. Journal of Chronic Fatigue Syndrome Vol. 5, No. 1, 1999. Copies from Haworth Press, 1.800.342.9678.

D

D

Del Kennedy hopes to publish a book of stark photography portraying the worst effects of Myalgic Encephalomyelitis (CFS). The MS Society’s poster campaign triggered the idea. The concept calls for juxtaposing ‘skeptical’ quotations about CFS by the medical community with similar statements about MS made in the earlier in this century when it was called hysterical paralysis. Financial sponsors and professional photographers are needed. Contact Del at [email protected].

D

Laura Wright is collecting information (surveys) about people’s experiences with chronic illness and health insurance portability, gemini.hmi.missouri.edu/ wrightl. Laura is with the Department Of Health Management and Informatics, University of Missouri–Columbia.

SLEEP DISRUPTION

R

esearchers disrupted the slow wave sleep of controls to evoke the FM profile of musculoskeletal pain, fatigue, and abnormal alpha EEG sleep pattern. They concluded that disrupted sleep is most likely an important factor in the symptoms of FM. Journal of Rheumatology, 1999 Jul; 26(7): 1568–92; “Effects of selective slow wave sleep disruption on musculoskeletal pain and fatigue in middleaged women.” Lentz, et al.

SPIRITUAL JOURNEYS

S

everal people have expressed interest in a spiritual journeys group to explore the spiritual aspects of living with chronic illness. Our culture has become extremely fragmented and focused on specialization. We take our bodies to the doctor, our minds to school, and our souls to church. This is the place to integrate all three. It offers the opportunity to worship briefly and informally, pray with and for each other, and share struggles as well as joys and insights. Above all, it’s about growing in faith and drawing upon the hope and power that God’s presence offers. We would be intentional about trying to honor whatever tradition people claim. We are considering either Saturday or Sunday afternoons at the hospital in a room with comfortable chairs! We would meet once a quarter beginning next year, and every other month if there is enough interest. For feedback, contact Carol.

GATHERINGS

O

ur September 11 kickoff “nonparty” party, “non-meeting” meeting was a great success. Twenty people gathered, ate pizza, and generally enjoyed being with others who understood about living with this illness. Our next gathering is November 20 from 69 p.m. in the Oak Creek Lane Apartments clubhouse/office in Bedford. We’ll order pizza; bring munchies if you like. We hope to have these once every quarter, possibly every other month if there is enough interest. A social coordinator is needed— someone please volunteer! We will also need folks who can volunteer their home or apartment meeting room. If you need directions, want to volunteer for coordinator, or volunteer your space, contact Carol! “Gatherings” is the temporary name for these events. When considering names remember we want these meetings to be fun and uplifting, but, like the name CFS is frequently misunderstood, remember we don’t want to spread incorrect perceptions to others about this disease. So, give us your ideas and tell us what you think!

UPCOMING MEETINGS Tuesday, October 19, 7:00 p.m. John Gonino, D.O. “TREATMENT OF CHRONIC FATIGUE SYNDROME & FIBROMYALGIA” Dr. Gonino specializes in treating CFS, FM, and similar conditions so common to those who have CFS or FM. To achieve optimum health, Dr. Gonino treats symptoms using both conventional medicine and natural therapies to heal the body at the cellular level. In 1995, his wife was diagnosed with CFS so he has experience in the difficulties of living with chronic illness. His staff includes a naturopathic doctor, a holistic medicine RN, and an IV therapist. Treatments include intravenous vitamin and dark field blood microscopy amongst others.

Saturday, October 23, 1:30–3:00 p.m. Les Simpson, Ph.D. “ABNORMAL RED BLOOD CELL MORPHOLOGY IN CFS & FM” Emmanuel Presbyterian Church, 2701 Harwood Road, Bedford A former medical school researcher and World Health Organization lecturer from New Zealand, Dr. Simpson has found that the blood of CFS/FM patients is characterized by changed red cell shape populations and increased rigidity. The resulting impaired capillary blood flow compromises the oxygenation of tissues and organs. Dr. Simpson’s seminar features a slide presentation and information about his treatment protocol. Blood will be drawn from those interested in having the $30 electron microscope test (valued at $220). A report suitable for disability is available for $8. There will be a $5 admission charge to help cover travel expenses. Please RSVP to Carol. Note that this is a special Saturday meeting not held at the hospital.

Saturday, November 13, 3:00–4:30 p.m. Elizabeth Dunlap, attorney “DISABILITY ISSUES” If you are dealing with disability or think it could be a possibility in the future, don’t miss this important meeting with attorney Elizabeth Dunlap. Elizabeth represents adults with Social Security Disability claims. She initiated the formation of the Dallas Association of Social Security Claimants Attorneys and has served RAIN OG as it’s President for two years. If you have successfully navigated the disability system hree CFS patients were and have advice and encouragement to offer, discussing the travails of brain please come share your experience. Note that fog. One said, “Sometimes I catch this is a Saturday afternoon meeting. There myself with a jar of mayonnaise in will be no Tuesday night meeting in November. my hand in front of the refrigerator and can’t remember whether I need to put it away, or start making a Tuesday, December 14, 7:00 p.m. sandwich.”

B

F

T

“ANNUAL PLANNING MEETING: CHOOSING TOPICS & SPEAKERS FOR YEAR 2000”

Make your voice heard! Be sure to join us for this very important planning meeting. We’ll explore many possibilities for the coming year. It helps to have lots of people there to help determine which topics are the most interesting and beneficial. If you can’t make it but know a potential speaker, please contact Carol. Note that this is the second Tuesday of the month, not the third. There will be no third Tuesday meeting in December.

The second chimed in, “Really, sometimes I find myself on the landing of the stairs and can’t remember whether I was on my way up or on my way down.” The third one responded, “Well, I’m glad I don’t have those kind of problems, knock on wood,” as she rapped her knuckles on the table. “That must be the door, I’ll get it.”

9

THE REST OF THE STORY . . . Stephen, [email protected], reports that before beginning the following protocol, he could only work less than ten hours weekly. He can now work an average of 30 hours a week. Over the last several years his protocol has built to include aspirin, naproxen sodium, vitamin C, garlic tablets, ginkgo, DHA, creatine, bee-venom injections, reishi, melatonin, valerian, klonopin, neurontin, talwin, pletal, ambien or elavil (alternates), amantadine (an antiviral), and low doses of hydrocortisone at the beginning of any relapse. Since viewing our videotape of Dr. Cheney’s seminar he has begun Immunocal, Ultra Clear Sustain, and hydroxycobalamin B-12 injections and seen noticeable improvement. Carol, our group leader, is experiencing significant improvement on the highly specialized whey protein supplement recommended by Dr. Cheney. Immunocal and IMUPlus are two such products of which Dr. Cheney is confident. Available from Allergy Research/NutriCology at $110 for 60 packets, IMUPlus is the cheaper of the two products. A 25% discount is available for those 55 and over, 1.800.545.9960, www.nutricology.com. This product works to restore the detox pathway and antiviral/antimicrobial mechanisms. Although two packets a day are the recommended dose, Carol became much sicker and initially crashed using this amount. She was detoxing too quickly, releasing more toxins than her system could handle. Since her fever returned, it seems her antiviral/anti microbial mechanisms were kicking in too aggressively also. She dropped back to half a pack for several weeks, then slowly advanced the dose back up to the two packs a day. She believes it has made more difference than any other single treatment. Retta, a group member who has had CFS for a couple of years, started on Nutrition for Life products on her doctor’s recommendation. They seem to be helping her a great deal. She has since become a distributor and would be happy to talk with anyone about the products or refer them to her doctor in Sachse. She can be reached at either 972.429.9360 or [email protected]. Another group member, Cheryl, is a working veterinarian who has had CFS for 10

FULL SPEAKER INFO 15 years. She recently found some herbal and nutritional products that have allowed her to get off antidepressants, allergy injections, all prescription meds, and all other vitamin supplements. She has lost weight and has more energy than she has had in years. Reach her at 972.732.8831 or [email protected]. After years of FM, Patsy Stephens is now pain-free. She and others in her support group discovered that those who have ADD in addition to FM often respond remarkably to certain drugs. Until she read the criteria– inattention, hyperactivity, impulsivity–she had no idea she also had ADD. Her story can be found at www.add-fibromyalgia.com or by contacting Carol. Dave Williams has had CFS for years but now considers himself fully recovered. After much study and research he developed a protocol that has shown profound benefits for certain people. If you have gained weight, experience a sore throat after exertion, have frequent tender lymph nodes in the neck area, perspire a lot, and notice your perspiration is unusually salty, you fit his profile. By special manufacturer arrangement, Dave offers the products for his protocol at drastically reduced prices on www.seaquake.com/bulk.html. His website says, “All our bulk items come with a manfacturer’s certificate of analysis and are quaranteed to be the most pure, top grade products currently available in the world.” Dave went out looking for sources of product for himself and others to take; he’s trying to prove his theory about his protocol. He wants people to get better, to actually to get well on his products. Contact him at [email protected], or 945.946.5551. Note: Dave is a very well read patient, not a medical practitioner.

THANKS!

M

any thanks to the amazing women at Emmanuel Presbyterian Church who so willingly take care of the folding, licking, sticking, and other mailing and distribution-related needs for us. Also, many thanks to the HEB Hospital for their donation of printing and mailing services. Without you all, this publication would not be possible.

Dr. Gonino specializes in treating CFS, FM, Irritable Bowel Syndrome, Candidiasis (yeast infection), Hypoglycemia, Sleep Disruptions, Chronic Headaches, Allergies, and similar conditions common to those who have CFS or FM. To achieve optimum health, Dr. Gonino control the symptoms using conventional medicine and natural therapies to heal the body at the cellular level. In 1995, his wife was diagnosed with CFS, which gives him personal experience in the difficulties of living with chronic illness. His staff includes a naturopathic doctor, an RN trained in holistic medicine, an IV therapist, and a physical medicine therapist. Treatments include: intravenous vitamin and oxidative therapies; nutrition therapies; allergy testing and treatment; phase contrast and dark field blood microscopy; natural hormones; manipulative medicine; and, chelation. A former medical school researcher and World Health Organization lecturer from New Zealand, Dr. Simpson has found that the blood of CFS/FM patients is characterized by changed red cell shape populations and increased rigidity. The resulting impaired capillary blood flow compromises the oxygenation of tissues and organs. Dr. Simpson’s seminar features a slide presentation and information about his treatment protocol. After graduation from West Virginia with a BS in Economics, magna cum laude, in 1980 and its College of Law in 1983, Elizabeth Dunlap was a general practitioner, emphasizing Social Security disability and Worker’s Comp cases, for 6 years in Pt. Pleasant, West Virginia. She relocated to Dallas, Texas in 1989 to join Carl Weisbrod in his disability practice, rising to junior partner in 1992. Over a thousand hearings and appeals later, she returned to solo practice in 1998 where she continues to handle only disability claims. She initiated the formation of the Dallas Association of Social Security Claimants Attorneys in late 1992 and served as its President for two years.

CHRONIC FATIGUE SYNDROME & FIBROMYALGIA SUPPORT GROUP OF DFW

I

f you find any listing in this newsletter which references calling or contacting Carol, it references our group leader, Carol Sieverling; see the credits for further information about contacting Carol. Please note that this newsletter will be available online also at:www.virtualhometown.com/dfwcfids. The CFS/FM Support Group of DFW meets from 7:00–8:30 p.m., the third Tuesday of each month at Harris Methodist HEB Hospital, located at Hwy 183 and Hospital Parkway in Bedford. We meet on the first floor of the Edwards Cancer Center; signs will direct you to the appropriate room. Some patients are affected by chemical odors. We ask for your thoughtful consideration of others—don’t wear perfume, cologne or clothes exposed to smoke to the meeting. Remember that common household agents frequently contain fragrances also. Advocacy continued...

Please write to at least one of the following Senators; if you live in one of the following states, please make a special point of writing to that Senator. If you do not live in any of these states, the most important people to write to are Senator Frist and Senator Jeffords. ✒ ✒ ✒ ✒ ✒ ✒ ✒

James H. Jeffords (Vermont), Chairman Bill Frist (Tennessee), Subcomm. Chair. Judd Gregg (New Hampshire) Michael B. Enzi (Wyoming) Susan M. Collins (Maine) Sam Brownback (Kansas) Jeff Sessions (Alabama)

Thank you for helping to advance the battle to conquer CFIDS by telling these Senators of the need for increased attention, accountability and support for CFIDS research. As always, please contact The CFIDS Association and let us know to whom you wrote and what sort of response you received. A sample letter is included on the next page which may be used or you can simply use it as a guide for writing your own letter. Advocacy continued on page 12...

ADVOCACY ALERT FROM The CFIDS Association of America Your Help is Needed! Get Senate Hearings on Federal CFIDS Research Problems The Centers for Disease Control (CDC) has finally admitted wrongdoing and apologized for mismanaging CFIDS research dollars and lying to Congress and the American people about it. They have invited a dozen leading CFIDS advocates to attend a meeting on October 13 in Atlanta—at the CDC’s expense—to discuss the problems and make amends. They have promised that they will restore a portion of the missing funds over the next four years. And the General Accounting Office (GAO) has initiated its own investigation into the problems with the government’s CFIDS research program. Are we satisfied? No. Here are some reasons why: ✘ The people responsible for the mismanagement of the funds and the CFIDS program itself are still employed at CDC and still have control over the program. ✘ There has been no certain sign that CDC managers are taking CFIDS—as a debilitating illness or an important public health concern—seriously. ✘ The Department of Health and Human Services, which is responsible for CDC, has not responded to the Inspector General’s finding of mismanagement, except for repeating the CDC’s party line that they’re sorry they made a mistake and they’re changing their accounting system to prevent further problems. ✘ Outside of the situation at CDC, the National Institutes of Health (NIH) has its own history of inattention to CFIDS research. Despite the generous increases Congress has given NIH in recent years, CFS research funding actually decreased 11% from FY97 to FY98. The total NIH investment in CFS research in FY98 was $6.4 million, hardly a drop in the bucket for an illness which affects at least 500,000 American women, men and children Clearly these problems are deserving of greater investigation and attention. For this reason, The CFIDS Association is calling for a Senate Hearing to delve further into these issues and to bring public attention to these serious issues. We have made our request in meetings with members of the Senate Health, Education, Labor-Pensions (HELP) Committee, and many of them have been very supportive of our call for a Hearing. Others, however, are unconvinced. For example, the staff of Senator Bill Frist of Tennessee was quite reluctant to add a CFIDS hearing to their subcommittee agenda. Senator Frist is the only practicing physician in the Senate, and many other Senators look to him for direction on health issues, so his opinion is very important to us. We need your help NOW! Help us show that there is a clear and convincing need for the Senate HELP Committee to hold a Hearing on the federal government’s management of CFIDS research and policy. We are specifically interested in writing letters to Republican members of the HELP Committee, as they were the most reluctant to schedule a Hearing on this issue. What to do: A sample letter has been included below. You may use the letter as-is by doing the following: ✒ Fill in the date and your name and address at the top of the page. ✒ Photocopy the letter (if you plan to send one to more than one of the Senators). ✒ Address your letter to one of the Senators listed below, as follows (they all have the same mailing address): The Honorable (full name) United States Senate Washington, DC 20510 ✒ Put it in an envelope, affix postage and mail it directly to the Senator. Or, if you can, write an original letter, as many Senators pay closer attention to individual letters rather than form letters. 11

Advocacy . . . continued from page 11

The Honorable (full name) United States Senate Washington, DC 20510 Dear Senator (last name): As you may be aware, last spring the Department of Health and Human Services’ Inspector General found that the Centers for Disease Control and Prevention (CDC) had misdirected funds for Chronic Fatigue Syndrome (CFS) research and lied to Congress and the American people about it. Although the CDC has apologized for its mismanagement of CFS funds and has stated that the funds will be restored to the CFS research program, significant problems remain at CDC and other DHHS agencies. ✘ The people responsible for the diversion of funds from CFS into other programs remain in position at CDC and maintain control over the CFS program’s operation. ✘ DHHS Secretary Donna Shalala has been virtually silent on the IG’s findings, as have other DHHS officials. Any response they have made is merely a restatement of CDC’s letter of apology. ✘ There have been no assurances that DHHS is taking CFS seriously as a disabling illness or important public health concern, despite new data from CDC which shows that more women have CFS than have lung cancer, HIV or AIDS. ✘ The National Institutes of Health (NIH) has not changed its long-standing indifference to CFS research. Despite the generous increases Congress has given NIH in recent years, CFS research funding actually decreased 11% from FY97 to FY98. The total NIH investment in CFS research in FY98 was $6.4 million, just $12.80 for each of the 500,000 American women, men and children who have CFS. The CFIDS Association of America, the nation’s leading organization working to conquer Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), has tried to work with the federal health agencies to correct these problems, but has met with resistance and apathy from many of those who are charged with protecting the nation’s health. The problems with the federal government’s CFS research program are grave and deserving of increased scrutiny. A Hearing in the Health, Education, Labor and Pensions Committee on the federal government’s management of CFS research would shed light on the problems and send a message to the federal health agencies that Congress is serious about its annual requests for increased attention and research on CFS. As one of at least 500,000 Americans with CFS who are depending on federal resources to help scientists to discover the cause, treatment, and cure for CFS, I ask that you take my request seriously and schedule a Hearing this fall to examine the government’s attention to CFS research and policy. Thank you for your consideration of this important matter. If you have any questions about the diversion of funds or any other CFS-related matter, please contact Mary Beth Buchholz of The Sheridan Group at 202 462-7288. Sincerely yours,

The CFIDS Association of America Advocacy, Information, Research and Encouragement for the CFIDS Community PO Box 220398, Charlotte NC 28222-0398 Voice Mail: 800/442-3437 Fax: 704/365-9755 WWW: http://www.cfids.org General Email: [email protected]

12

October 1999 Table of Contents TABLE OF CONTENTS .............................................................................................................................................................. 1 SKEPTICAL OF SKEPTICS: A DOCTOR WITH CFIDS SPEAKS OUT ................................................................................................ 1 MICHELLE AKERS: STILL KICKIN’.............................................................................................................................................. 1 FM STUDY IN CANADA ........................................................................................................................................................... 2 GAO INVESTIGATES CFS PROGRAMS ........................................................................................................................................ 2 NERVE GROWTH ..................................................................................................................................................................... 2 WHAT’S IN A NAME? ............................................................................................................................................................... 3 THE DFW LIGHTHOUSE CREDITS ........................................................................................................................................... 3 Katt’s World .......................................................................................................................................................................... 3 LET’S TALK! RECOVERY FROM CHRONIC FATIGUE SYNDROME ..................................................................................................... 4 FALSE CFS DEPICTION ............................................................................................................................................................ 4 MERCK MANUAL NOW LISTS CFS ........................................................................................................................................... 4 CFS & CHINESE MEDICINE .................................................................................................................................................... 5 MEMBERS’ ENGAGEMENT ......................................................................................................................................................... 5 PETITION FOR EXPANDED GAO INVESTIGATION ........................................................................................................................ 5 RESEARCH BREAKTHROUGH ...................................................................................................................................................... 5 INTERNATIONAL CFS CONFERENCES ......................................................................................................................................... 6 NEW FM DISABILITY TEST ..................................................................................................................................................... 6 CDC RETALIATION ................................................................................................................................................................. 6 TOXIC MERCURY ..................................................................................................................................................................... 6 MEETING TAPES ..................................................................................................................................................................... 6 MEDIA BITES .......................................................................................................................................................................... 6 NEW STAFF ............................................................................................................................................................................. 6 ORAL ALPHA INTERFERON ....................................................................................................................................................... 7 INTERNET RESOURCES ............................................................................................................................................................. 7 MONEY MATTERS! .................................................................................................................................................................. 7 DISABILITY RESOURCES ............................................................................................................................................................ 7 ONE TO ONE ......................................................................................................................................................................... 8 HMO REFORM ...................................................................................................................................................................... 8 CDC UPDATE ON CFS ........................................................................................................................................................... 8 STORIES & PHOTOS NEEDED ................................................................................................................................................... 8 SLEEP DISRUPTION .................................................................................................................................................................. 8 SPIRITUAL JOURNEYS ................................................................................................................................................................ 9 GATHERINGS ........................................................................................................................................................................... 9 UPCOMING MEETINGS ............................................................................................................................................................. 9 BRAIN FOG ............................................................................................................................................................................. 9 THE REST OF THE STORY ...................................................................................................................................................... 10 THANKS! .............................................................................................................................................................................. 10 FULL SPEAKER INFO .............................................................................................................................................................. 10 CHRONIC FATIGUE SYNDROME & FIBROMYALGIA SUPPORT GROUP OF DFW ............................................................................. 11 ADVOCACY ALERT FROM THE CFIDS ASSOCIATION OF AMERICA .............................................................................................. 11 SAMPLE ADVOCACY LETTER .................................................................................................................................................... 12

13