HHHHHH HHHHHH HHHHHH H H HHHHHH H H HHHHHH H H H HH H H H H H H HHHHH HHHHHH HHHH H H H HHHH H H H HHHHHH H H H H HHH H H H H H HHHHHH H HHHHHH H HH HHHHHH HHHHH HHHHHH Chronic Fatigue Syndrome Electronic Newsletter -------------------------------------------------------------------- No. 32 March 31, 1994 Washington DC -------------------------------------------------------------------- PAPERS FROM OCT. '92 CONFERENCE CONTENTS >>>1. Papers from Oct. '92 conference published in C.I.D. >>>2. BMJ articles highlight psychological aspects of CFS >>>3. U.S. ICC meeting summary >>>4. May 12 update for March >>>5. USA Youth Awareness campaign >>>6. Speaking event: Dr. James Jones in Buffalo. April 25 ------------------------------------------------------------------- >>>1. Papers from Oct. '92 conference published in C.I.D. The journal Clinical Infectious Diseases has published research and review papers from the October 1992 International Research Conference on CFS/ME held in Albany, New York. (This conference was reported in CFS-NEWS no. 5.) This journal edition is about 168 pages in length. To purchase a copy, send US$ 8.00 to Clinical Infectious Diseases, University of Chicago press, 5801 S. Ellis Ave., Chicago, IL 60637 USA and specify Volume 18, Supplement 1, January 1994. Table of Contents CHRONIC FATIGUE SYNDROME: CURRENT CONCEPTS Introduction -- Paul H. Levine Reflections on Epidemic Neuromyasthenia (CFS) -- D.A. Henderson Discussion: Reflections on Epidemic Neuromyasthenia (CFS) Comments on CFS -- Alexis Shelokov PART I: EPIDEMIOLOGY OF C.F.S. Introduction -- Walter J. Gunn percent of articles in the medical trade press and 69 percent in A Comparison of Case Definitions of CFS -- David Bates, Dedra Buchwald, Joshua Lee, Phalla Kith, Teresa Doolittle, Phoebe Umali and Anthony Komaroff Epidemic Neuromyasthenia and CFS: Epidemiological Importance of a Cluster Definition -- Paul Levine Primary Juvenile Fibromyalgia Syndrome and CFS in Adolescents -- David Bell, Karen Bell and Paul Cheney Borrelia burgdorferi Reactivity in Patients with Severe Persistent Fatigue Who Are from a Region in Which Lyme Disease Is Endemic -- P.K. Cole, Lauren Krupp, Carol Doscher and Komal Amin CFS and a Disorder Resembling Sjogren's Syndrome: Preliminary Report -- Leonard Calabrese, Mark Davis and William Wilke A Comparative Review of Systemic and Neurological Symptomatology in 12 Outbreaks Collectively Described as CFS, Epidemic Neuromyasthenia and Myalgic Encephalomyelitis -- Nathaniel Briggs and Paul Levine Concurrent Sick Building Syndrome and CFS: Epidemic Neuromyasthenia Revisited -- Alexander Chester and Paul Levine An Approach to Studies of Cancer Subsequent to Clusters of CFS: Use of Data from the Nevada State Cancer Registry -- Paul Levine, Martin Atherton, Thomas Fears and Robert Hoover Abstracts CFS: A Possible Delayed Hazard of Pesticide Exposure -- P.O. Behan and B.A.G. Haniffah Estimating CFS-Related Symptoms Among Nurses: A Preliminary Report -- Leonard Jason, Stephanie Taylor, Sharon Johnson, Stephen Goldston, Doreen Salina, Peter Bishop and Lynne Wagner Closeness of Contacts Between People in Two Clusters of CFS: Evidence for an Infectious Etiology? -- Seymour Grufferman, Roslyn Stone, Nancy Eby, Mary Huang, Susan Muldoon and Lili Penkower Results of an Investigation of Three Clusters of CFS -- Seymour Grufferman, Paul Levine, Nancy Eby, Susan Muldoon, Mary Huang, Theresa Whiteside, Lili Penkower and Ronald Herberman Summary and Perspective: Epidemiology of CFS -- Paul Levine PART II: CLINICAL AND MULTIDISCIPLINARY RESEARCH ON C.F.S. Introduction -- James Jones Acylcartinine Deficiency in CFS -- Hirohiko Kuratsune, Kouzi Yamaguto, Mamoru Takahashi, Hideo Misaki, Shinichi Tagawa and Teruo Kitani Sleep Disorders in Patients with Chronic Fatigue -- Dedra Buchwald, Ralph Pascualy, Charles Bombardier and Phalla Kith Psychosocial Correlates of Illness Burden in CFS -- Michael Antoni, Andrew Brickman, Susan Lurgendorf, Nancy Klimas, Ann Imia- Fins, Gail Ironson, Ruth Quillian, Maria Jose Miguez, Flavia van Riel, Robert Morgan, Roberto Patarca and Mary Ann Fletcher Measuring the Functional Impact of Fatigue: Initial Validation of the Fatigue Impact Scale -- John Fisk, Paul Ritvo, Lynn Ross, David Haase, Thomas Marrie and Walter Schlech Brief Communication Cognitive Functioning of Patients with CFS -- Susan Johnson, John DeLuca, Nancy Fiedler and Benjamin Natelson Abstracts Laboratory Abnormalities in Patients with CFS -- DW Bates, D Buchwald, J Lee, T Doolittle, J Kornish, C Rutherford, WH Churchill, P Schur, D Wybenga, J Winkelman and AL Komaroff Comparison of the Psychiatric and Psychological Profiles of Patients with CFS, Multiple Sclerosis, and Major Depression -- CM Pepper, C Doscher, M Hirsh, E Guadino, PK Coyle and LB Krupp Survey of the Ocular Manifestations of Chronic Fatigue Immune Dysfunction Syndrome -- Walter Potaznick and Neil Kozol Clinical Trials A Controlled Clinical Trial with a Specifically Configured RNA Drug, Poly(I)-Poly(C12U), in CFS -- David Strayer, William Carter, Isadore Brodsky, Paul Cheney, Daniel Peterson, Patricia Salvato, Carol Thompson, Mark Loveless, David Shapiro, William Elsasser and David Gillespie Upregulation of the 2-5A Synthetase/RNase L Antiviral Pathway Associated with CFS -- Robert Suhadolnik, Nancy Reichenbach, Patricia Hitzges, Robert Sobol, Daniel Peterson, Berch Henry, Dharam Ablashi, Werner Muller, Heinz Schroder, William Carter and David Strayer A Comparison of Cognitive Behavioral Treatment for CFS and Primary Depression -- Fred Friedberg and Lauren Krupp Abstracts A Pilot Study of Sertraline for the Treatment of CFS -- PO Behan, BAG Haniffah, DP Doogan and M Loudon "One Stop Treatment" --- A British Fatigue Clinic -- Simon Hatcher A Controlled Trial of Immunologic and Cognitive-Behavioral Therapy for Patients with CFS -- Andrew Lloyd, Ian Hickie, Alan Brockman, Catherine Hickie, Andrew Wilson, John Dwyer and Denis Wakefield Kutapressin Inhibits In Vitro Infection of Human Herpesvirus Type 6 -- DV Ablashi, Z Berneman, C Lawyer and A Komaroff Poly(I)-Poly(C12U) Inhibits In Vitro Replication of Human Herpesvirus Type 6 -- DV Ablashi, Z Berneman, DR Strayer, RJ Suhadolnik, Nancy Reichenbach, Patricia Hitzges and A Komaroff Subjective Reduction in Symptoms of CFS Following Long-Term Treatment with a Porcine Liver Extract: A Phase 1 Trial -- Thomas Steinbach, William Hermann, Carl Lawyer, David Montefiore, Sudhakar Wagle, Ali Gawish and David Ferguson Summary: Clinical and Multidisciplinary Research on CFS -- Dedra Buchwald, James Jones and Paul Levine PART III: VIRAL STUDIES OF C.F.S. Introduction: Jay Levy Lack of Evidence for Infection with Known Human and Animal Retroviruses in Patients with CFS -- Walid Heneine, Toni Woods, Saswati Sinha, Ali Khan, Louisa Chapman, Lawrence Schonberger and Thomas Folks Studies on Enteroviruses in Patients with CFS -- JW Gow, WMH Behan, K Simpson, F McGarry, S Keir and PO Behan Summary: Viral Studies of CFS -- Dharam Ablashi Independence Avenue S.W. PART IV: IMMUNOLOGIC STUDIES OF C.F.S. Introduction -- Andrew Lloyd Immunologic Abnormalities Associated with CFS -- Edward Barker, Sue Fujimura, Mitchell Faden, Alan Landay and Jay Levy Cytokine Production and Fatigue in Patients with CFS and Healthy Control Subjects in Response to Exercise -- Andrew Lloyd, Simon Gandevia, Alan Brockman, John Hales and Denis Wakefield Dysregulated Expression of Tumor Necrosis Factor in CFS: Interrelations with Cellular Sources and Patterns of Soluble Immune Mediator Expression -- Roberto Patarca, Nancy Klimas, Susan Lugtendorf, Michael Antoni and Mary Ann Fletcher Brief Communications Association Between HLA Class II Antigens and the Chronic Fatigue Immune Dysfunction Syndrome -- RH Keller, JL Lane, N Klimas, WM Reiter, MA Fletcher Decreased Natural Killer Cell Activity Is Associated with Severity of Chronic Fatigue Immune Dysfunction Syndrome -- Emmanual Ojo- Amaize, Edward Conley and James Peter Summary: Immunologic Studies of CFS --Andrew Lloyd and Nancy Klimas PART V: PUBLIC POLICY AND C.F.S.: A PERSPECTIVE Abstract The Economic Impact of CFS -- Andrew Lloyd and Howard Pender Summary of Public Policy and CFS: A Perspective -- Mark Loveless, Andrew Lloyd and Rudy Perpich PART IV: CLOSING REMARKS CFS: What Have We learned and What Do We Need to Know? -- AL Komaroff and Nancy Klimas [Thanks to Ty Webb for alerting CFS-NEWS about this edition of Clinical Infectious Diseases.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. BMJ articles highlight psychological aspects of CFS The British Medical Journal (BMJ) in its March 19, 1994 edition (volume 308) contains four articles on CFS. The essay "CFS: prevalence and outcome / Psychosocial factors are important for management" by S.M. Lawrie (Royal Edinburgh Hospital) and A.J. Pelosi (Hairmyres Hospital, Glasgow) (pages 732-733) reviews two of this edition's papers, and it emphasizes psychiatric aspects of treatment and possible etiology. The authors state that "All physicians need help with patients who come to consultations armed with a self diagnosis of myalgic encephalomyelitis, detailed information of viral aetiology, and entrenched views on the perils of exertion and the importance of prolonged rest.... The findings reported in this week's journal should help doctors deal with the main source of controversy about fatigue states -- whether chronic fatigue syndrome is a physical or mental illness. We find this semantically difficult to discuss because we do not accept the distinction between physical and psychological medicine that pervades the medical literature and that is even more evident in pamphlets from self-help organizations. Clearly, however, in some patients labelled as having chronic fatigue syndrome or myalgic encephalomyelitis, psychiatric diagnoses -- with all their faults and problems -- would improve management." The authors refer to a study which appears in the same edition and they go on to say "Wilson et al point out that a conviction of physical disease may arise from severe physical symptoms, but the possibility that a strong belief in a physical -- usually viral -- aetiology may actually cause prolonged and preventable disability cannot be ignored (11). This "physical conviction" and "psychosocial denial" may promote chronicity if a virus becomes seen as the source of all problems and encourages patients to avoid dealing with personal difficulties (11)." (The numbers in parenthesis are the authors' footnoted reference to the Wilson paper.) Although the authors refer frequently to Wilson's paper for support of its opinions, the editor of CFS-NEWS finds that the Wilson paper is itself more objective and well-rounded in its conclusions. The paper "Longitudinal study of outcome of chronic fatigue syndrome" by Andrew Wilson, Ian Hickie, Andrew Lloyd, Dusan Hadzi-Pavlovic, Clem Boughton, John Dwyer and Denis Wakefield, all of the Prince Henry Hospital, Sydney (pages 756-759) sets out to examine the predictors of long term outcome for patients with CFS and concludes that although most CFS patients improve, a substantial proportion remain functionally impaired and that psychological factors such as illness attitudes and coping style seem more important predictors of long term outcome than immunological or demographic variables. In a concluding statement the authors write "These findings suggest that subjects who deal with distress by somatisation (presenting physical rather than psychological symptoms) and who discount the possible modulating role of psychological factors are more likely to have an unfavourable outcome. The presence or absence of a specific psychiatric diagnosis may not be as important as a defensive style and attitudes towards illness. There are, however, several alternative explanations which need consideration. The initial assessment was carried out at entry to the trials not at onset of illness, and more severe illness course may determine attitudes to illness and influence coping mechanisms. Stronger disease conviction may also produced higher levels of illness morbidity, rather than lower levels. Though we obtained the same model using different regression analysis strategies, validation on an independent data set is required to prove the correctness of this model... Given a significant correlation between the absence of a premorbid psychiatric diagnosis and denial of psychological difficulties ... a relation may exists between psychological factors (such as coping style) and immunological response. This finding would be consistent with the reports that specific coping styles such as suppression of feelings (20) or fighting spirit (21) may modulate the outcome for patients with cancer, perhaps through changes in immune function (22). Further longitudinal studies are needed to examine the psychological relations between psychological distress and coping style, immunological function, and the natural course of chronic fatigue syndrome." Two other papers relating to CFS appeared in this edition of BMJ. "Population based study of fatigue and psychological distress" by T Pawlikowska, T Chalder, SR Hirsh, P Wallace, DJM Wright and SC Wessely of various London medical schools (pages 763-766) set out to determine the prevalence of fatigue in the general population and the factors associated with fatigue. The study found that 18 percent of respondents complained of excessive fatigue of 6 months or longer and that the number and severity of fatigue symptoms was associated with psychological morbidity, although the authors did not conclude that this indicated causality. Self diagnosis of chronic fatigue syndrome was reported in 0.2 percent of the full sample (i.e., one percent of those reporting excessive fatigue of longer than 6 months). Lastly, "Professional and popular views of CFS" by Gael MacLean and Simon Wessely of King's College School of Medicine and Dentistry, London (pages 776-777) studied the coverage of CFS in the British popular and medical press since 1980 through to the present. It found that 49 percent of articles in research journals did not favor organic causes for the illness, whereas 31 percent did. By contrast, 55 percent of articles in the medical trade press and 69 percent in national newspapers and women's magazines did favor organic causes. The paper did not mention any comparison of more recent articles vs. articles published longer ago for either professional or popular articles. The paper concluded that "Press coverage of chronic fatigue syndrome has amplified and distorted divisions in the research community concerning the chronic fatigue syndrome. Articles in the press concentrate on a simple medical model of illness reinforcing the stigma of psychological illness and dissatisfaction with traditional medical authority." [Thanks to Camilla Cracchiolo for alerting CFS-NEWS to this edition of the BMJ.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>3. U.S. ICC meeting summary [The following is a report by the editor of CFS-NEWS who attended the March 1 meeting.] The following is a summary of the March 1, 1994 quarterly meeting of the U.S. Interagency Coordinating Committee for CFS. The meeting was chaired by U.S. Assistant Secretary for Health Dr. Philip Lee. Although the meeting was advertised as accepting no public testimony, Dr. Lee accepted comments from those who did attend. Research case definition article: No draft was available at the meeting or for public distribution, however one soon would be circulated for comment to ICC governmental members and the committee's four newly appointed consultants (Judy Basso of the Minnesota CFS Assoc., Marya Grambs of the CFIDS Foundation, Kim Kenney of the CFIDS Assoc. of America and Orvaline Prewitt of the National CFS and Fibromyalgia Assoc.). The CDC's Dr. Mahy said that the current draft contained explicit clinical guidelines and recommended lab tests. The current plan is to finalize a draft by April for submission to a widely read peer-reviewed journal for possible publication in the summer. The name of the illness: Several attendees, notably Tom Hennessy (President of RESCIND) and Giovanna Del Deo (of RESCIND and the Massachusetts CFIDS Assoc.) urged that a change of name be included in the research case definition article, and they underscored that the current name is pejorative. Dr. Lee reiterated from the previous meeting (Nov. 17) that a change of name will expectedly happen when sufficient evidence reveals the cause of the disease, and furthermore the government does not have the responsibility for naming illnesses. Kim Kenney stated that it would be useful to have a concurrent eponym designated for the name, and she referred to at least one other government official who seemed to agree with that approach. Dr. John Renner (medical adviser to the National CFS and Fibromyalgia Assoc.) stated that this was a political issue and that very valuable time was being wasted by dwelling on it. Dr. Reeves of the CDC noted that the current draft of the research case definition article downplayed any endorsement of the current name, even though it did not recommend a specific name change just yet. In short, the various participants largely retained their previous positions on this issue. Grant proposals: Dr. Lee commented on the high quality of the research grants that had been approved, and recommended that NIH look into the work of the Human Genome Project with respect to CFS. He also noted that many studies had been approved through the National Institute for Allergies and Infectious Disease whereas only one study had been approved through the National Institute for Mental Health. Dr. Lee said that this fact underscored the idea that CFS does not appear to be a behavioral illness. CDC surveillance study: Work is nearly complete, reported Dr. Reeves, and the figures still appear in the range of 4 to 7 per hundred thousand. However, he reiterated the potential fault that a passive surveillance study such as this that relies on sentinel physicians might undercount the illness. Future studies will employ active surveillance. NIH research: Dr. Schluederberg of NIH reported that there will be a follow up trial with respect to previously published work by Demitrack et al. which had found a novel hormonal imbalance among CFS patients. The CDC informational brochure: Dr. Reeves reported that a 2nd draft had been given limited circulation for comment and that a 3rd draft is available for full public distribution and comment. (The comment period closed on March 25.) Dr. Reeves hoped to finalize the text by April 1. Orvaline Prewitt commented that the current draft was good, and Dr. Renner said that there was a tremendous need for this document to be completed and distributed to physicians and patients. Kim Kenney said that the current draft was "much, much better" and complimented the CDC for involving so many people in the comment process. Communications technology: Tom Hennessy proposed that there be a PC-based system to collect data and assist clinicians in diagnosing immunological diseases, which the government should promote. Dr. Lee directed Mr. Hennessy to follow up on this proposal with the Public Health Service's chief of data processing. There was not enough time to complete the meeting's agenda. Regarding future quarterly meetings, Dr. Lee said that the committee and its consultants would conference by telephone in the summer and winter, and that there would be in-person meetings in the spring and fall. The next in-person meeting might occur in the fall in Atlanta to coincide with a conference that might be held then. Otherwise it would take place again in Washington. Furthermore, Dr. Lee welcomed written comments from the public regarding additional consultants to be added to the committee, both with respect to private medical researchers and possibly additional patient advocates. Write to: Dr. Philip Lee U.S. Assistant Secretary for Health 200 Independence Avenue S.W. Washington, DC 20201 -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>4. May 12 update for March [The following is a portion of the March update of the RESCIND/May-12 organization, as published on March 13. It appeared on the CFS Newswire service. Readers may note that RESCIND is largely a volunteer effort, but that it does incur operating expenses. The RESCIND leadership is grateful for its volunteer support but has had difficulty in conducting business due to lack of funds. Contributions may be sent to RESCIND, Inc., 1521 Alton Road, Suite 210, Miami Beach, FL 33139 USA.] MAY 12: International CFIDS/ME Awareness Day March 1994 Update Sixty days. That's how long before MAY 12: International CFIDS/ME Awareness Day is upon us. Precious little time is left for groups to plan activities to mark the event and let the world know about the scope of this devastating illness. Because media coverage is so important in getting people to recognize CFIDS/ME, RESCIND is again urging people to request that national media outlets cover the CFIDS/ME story on or around May 12, 1994 (see section two, "MAY 12 ACTION"). RESCIND, Inc. will continue to issue monthly updates through May 1994 to help keep everyone up to date on the planning that is going on worldwide for the event. Patients are urged to distribute these updates at their local support group so that the greatest number of people can be kept abreast of the latest MAY 12 planning. Groups are urged to mail donations to RESCIND, Inc. (note new address -- see section three, "Contacting RESCIND, Inc.") so that the organization Together, we will turn the spotlight on CFIDS/ME! I. MAY 12 NEWS In Britain, The Action for M.E. group is working with the National Union of Students to undertake many awareness activities for MAY 12 throughout Britain. Also in Britain, The M.E. Association is promoting a 24-hour sponsored automobile drive through all 45 counties of England during the week of MAY 12 in order to raise funds and awareness. The drive is starting in Bristol and transportation is being provided by a local auto dealer. And both national groups are writing to national media and are prompting local support groups to help promote MAY 12: International CFIDS/ME Awareness Day. The Winter 1994 issue of THE CFIDS CHRONICLE includes a two page article which details the names and addresses of prominent U.S. and Canadian officials that should be contacted for MAY 12. RESCIND, Inc. would like to thank to The CFIDS Association of America for vigorously promoting the MAY 12 event in the past two issues of the CHRONICLE. The (USA) Youth Campaign for CFIDS Awareness, a project organized by and for youth with CFIDS, is involving young people in a letter writing campaign. The letters will be sent to President Clinton and the First Lady and will arrive on May 12, 1994. If you are a young person and would like to participate, mail your letters, before April 15, to: The Youth Campaign for CFIDS Awareness, c/o Rebecca Moore, P.O. Box 247, Warwick, NY 10990. The Oregon CFIDS Association has arranged with state Governor Barbara Roberts to have a proclamation signed declaring that the week of May 12 is Oregon CFIDS Awareness Week. The signing by the Governor will take place at the State Capitol Building in Salem in a public ceremony held mid-day on May 12. Information booths and other activities will be held in the building's galleria throughout the day. For further information, or to volunteer to help, contact the Oregon CFIDS Association, PO Box 746, Tualatin, OR 97062, or leave a message at telephone 1-503-650-2237 The CFIDS Olean group of New York will be conducting a letter writing and phone-in campaign to local and federal officials for MAY 12. The group will also be attempting to get media coverage in their area, including Buffalo and Rochester. Lastly, CFIDS Olean plans to set up information booths and assist with the C.A.N. petition drive. For more information, contact Lori Clovis, CFIDS Olean, P.O. Box 144, Hinsdale, NY 14743, telephone: (716) 557-2260. A Reminder: The CFIDS Activation Network (C.A.N.) of metropolitan New York is spearheading a national petition drive in coordination with MAY 12. The petitions will be presented to the U.S. Congress on that day. To get copies of the petition please contact C.A.N. at P.O. Box 345, Larchmont, New York 10538 or at telephone. (212) 627-5631 or fax (914) 636-6515. C.A.N. is also promoting the use of blue ribbons as a symbol of the CFIDS/MAY 12 movement. MAY 12 ACTION SOFTWARE for IBM/compatible and Macintosh computers will be available by April 1 on the computer networks (CompuServe, America Online, and GEnie). The software provides background information on the MAY 12 event, CFIDS/ME, and Florence Nightingale. In addition, MAY 12 PEN, letter writing automation software written by Lucie Dorais for the PC, will be available on the networks as well. The April MAY 12 update will provide more detailed information on how to obtain these programs. RESCIND, Inc. has developed a MAY 12 poster which will be available in the coming weeks. The poster is ideal for displaying near the MAY 12 demonstrations that various groups are sponsoring, as well as in malls and in other public places. RESCIND would like to print up MAY 12 T-shirts but is unsure of demand. If you would like to place an order, please send a check for $15 made out to RESCIND, Inc. to 1521 Alton Rd., Suite 210, Miami Beach, FL 33139. If you accompany your order with a photocopy of a letter that you have sent to an official about MAY 12/CFIDS/ME, then take one dollar off the price of each shirt ordered. II. MAY 12 ACTION This month RESCIND is again asking patients to write to the national media to request that news stories be prepared to be run on or around May 12, 1994. National media usually take a couple months to develop a story, so it is very important that people write letters immediately. Next month, RESCIND will be urging patients to write their local media, so you may want to begin on that now if you have already written to the national media. Sample Letter: The following is a sample letter intended for the media. Feel free to write your own letter if you wish. Dear , I would like to suggest coverage of a very serious illness for your upcoming May planning to coincide with MAY 12: International Awareness Day for Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS -- formerly known as Chronic Fatigue Syndrome)/Myalgic Encephalomyelitis (ME) Awareness Day. As you may be aware, CFIDS (the term used in the United States)/ME (the term used in most of the rest of the world) is a devastating disease that is striking a growing number of people around world. The illness, characterized by extreme fatigue, cognitive problems, and numerous flu-like symptoms like fever and sore throat, leaves many sufferers ill and bedridden for years at a time. Unfortunately, government and medical institutions around the world have been VERY slow to respond. It is important to note that the May 12th date was chosen to memorialize the birthdate of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale contracted a paralyzing, CFIDS/ME-like illness in her mid thirties and spent the last 50 years of her life virtually bedridden. If a cure is to be found for CFIDS/ME in the near future, government, medicine, and the general public must be made fully aware of the scope of this illness. This is where you come in. As a powerful conduit for human communication, you have a responsibility to inform citizens of the growing threat to human health that is CFIDS/ME. Please help me, someone who has been profoundly impacted by this illness, to shed light on CFIDS/ME on May 12th. Sincerely, Additional Talking Points: You might want to also include the following ideas in your communications to the media: - most other local and national media are being asked to run a story on CFIDS/ME on May 12. - the importance of this illness is shown in part by continued medical research by the U.S. National Institutes of Health (NIH) as well as research at Harvard, Prince Henry Hospital, the University of Glasgow and other renowned medical institutions. The NIH sponsored a conference last November on the illness to which they invited hundreds of doctors. - The U.S. Dept. of Veterans Affairs has recently declared Chronic Fatigue Syndrome (CFS) as the legitimate disability code for soldiers who have contracted Gulf War syndrome. - CFIDS/ME is an emerging illness. Other illnesses such as polio and multiple sclerosis took several decades to gain public acceptance as legitimate diseases. Hopefully in this day of rapid modern communications, this process will take a much briefer time for CFIDS/ME. - CFIDS will show a wide spectrum of severity. Most patients are in great pain, and many are completely disabled. Although CFIDS/ME is not usually life-threatening, many physicians who treat CFIDS/ME patients in addition to those who have AIDS or multiple sclerosis state that CFIDS/ME is often more debilitating and disabling than those other illnesses during the course of the illness. - The fact that children are contracting this disabling illness will have a deleterious effect on the economy since they may never become income-earning tax-payers. - [mention the worst aspects of how CFIDS/ME affects your life or that of someone you care about] - for more specific information about CFIDS/ME, contact any of the following organizations [list only those based in your own country]: USA: CFIDS Association of America, tel. 1-800-442-3437 CFIDS Activation Network, tel. 1-212-627-5631 RESCIND, Inc., 1521 Alton Road, Suite 210, Miami Beach, FL 33139 USA CANADA: National ME/FM Action Network 1-613-829-6667 Nightingale Research Foundation 1-613-728-9643 M.E. Association 1-613-563-1565 BRITAIN: Myalgic Encephalomyelitis Association 44-0375-642466 Action for M.E. 44-0749-670799 AUSTRALIA: ME/CFS Society of New South Wales 61-2-439-6026 ME/CFS Society of Victoria 61-3-888-8991 ME/CFS Society of South Australia 61-8-373-2110 ME Syndrome Society of Queensland 61-75-73-2772 CFS Society of Western Australia 61-09-483-6667 Media Outlets: The following is a listing of prominent media outlets for USA, Canada, Britain, and Australia. [TEXT DELETED -- these were published in CFS-NEWS no. 31. -- Editor] Advice on Organizing Rallies For those organizing a rally in conjunction with the MAY 12 event, here are some tips from a professional rally organizer: - Check your State House security requirements if you plan to organize a rally there. There MAY be special licensing requirements that you will need to take care of. - Contact the governor in your state in advance of May 12th and then, on May 12th, knock on his door and literally give him an announcement explaining the day's events. You'll probably be greeted by an aide. - Contact other organizations of related diseases like lupus, MS, diabetes, etc. and see if they would be interested in supporting the event (especially under the "Invisible Chronic Illnesses" term which is popular now). - Speakers at your event might include statements from young people or parents struggling with the illness. III. CONTACTING RESCIND, INC. If you are planning a specific effort in conjunction with this global event, or have an idea for MAY 12 action, please contact: RESCIND, Inc., 1521 Alton Road, Suite 210, Miami Beach, FL 33139. Information can then be included in these monthly updates and spread throughout the CFIDS/ME community. Please note that the deadline for each month's MAY 12 update is the first of each month. Thanks to our Communications Director Matt Straznitskas for compiling this update and for designing the MAY 12 and RESCIND logos. And special thanks to Roger Burns, Lori Clovis, Giovanna Del Deo and others who submitted ideas and information for this monthly MAY 12 update. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>5. USA Youth Awareness campaign The Youth Campaign for CFIDS Awareness c/o Rebecca Moore PO Box 247 Warwick, New York 10990 tel. 1-914-986-1023 Internet: 73622.21@COMPUSERVE.COM Dear Friends, I'm a 17 year old student and I've had Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) for several years. I have recently founded The Youth Campaign for CFIDS Awareness, and am organizing a letter writing campaign to the President and Mrs. Rodham Clinton. We hope to honor CFIDS Awareness Day by sending them a package of letters in which children and youth tell of their experiences with CFIDS, and of the need for research. I would appreciate any suggestions that you might have about how to reach as many youth as possible (i.e.: local support groups or newsletters). Also, if you know of any children/youth with CFIDS, feel free to pass on the following information, or to ask me to send them a copy. I have included most of the text of our information packet in this message. If you're interested, I'd be glad to send you a copy (Please send a self-addressed, stamped envelope). Thank you for writing, or for telling others about our project. Rebecca Moore .................................................................. The Youth Campaign for CFIDS Awareness CFIDS Awareness Day May 12, 1994 The Youth Campaign for CFIDS Awareness will focus on the involvement of youth in CFIDS Awareness Day 1994, through a letter writing campaign to the President and Mrs. Rodham Clinton. Together, youth with CFIDS will send a strong message to Washington: that CFIDS is a serious disease which affects many American children and youth, and that increased support for research is essential. What Youth Can Do: ** Please help us to spread the word about the letter writing campaign by telling your friends, support groups, and doctors about it. If we wish to send an effective message, it must be supported by as many letters as possible. ** Write a letter to the President and Mrs. Rodham Clinton. 1. First, please tell your CFIDS story (how you got sick, your symptoms, how it's affected your friends, school, doctors- whatever is most important to you). 2. Second, please be sure to close by letting them know how important it is that they support increased funding for CFIDS in the private and public sectors. 3. Your letter should be hand-written, and one page long. If you wish to make a more personal impression, attach a small, wallet sized photo to the upper left corner of your letter (see sample letters). 4. Please mail your letters by April 15 to: The Youth Campaign for CFIDS Awareness c/o Rebecca Moore PO Box 247 Warwick, New York 10990 We will mail all of the letters, TOGETHER, to the White House in time for CFIDS Awareness Day. [Information provided by Rebecca Moore.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>6. Speaking event: Dr. James Jones in Buffalo. April 25 Dr. James Jones will speak on the topic of "CFS: A Realistic Approach" on April 25, 10:30am at the Holiday Inn in Buffalo. Although there is no charge for the event, pre-registration is required (telephone 1-716-885-6062). Dr. Jones is on the faculty of the Univ. of Colorado School of Medicince and runs a CFS clinic at the Ntional Jewish Center for Immunology and Respiratory Medicine. This event is sponsored by the Millard Fillmaore Health, Education and Research Foundation. [Information provided by Lori Clovis.] =================================================================== CFS-NEWS (ISSN 1066-8152) is an international newsletter published and edited by Roger Burns in Washington D.C. It is distributed: through the "CFS echo" (discussion group) on the Fidonet volunteer network of BBSs; via the NIHLIST Listserv on Internet; and as USENET Newsgroup bit.listserv.cfs.newsletter. Back issues are on file on the Project ENABLE BBS in West Virginia USA at telephone 1-304-759- 0727 in file area 22, and the valuable patient resource file named CFS-RES.TXT is available there too. Suggestions and contributions of news may be sent to Roger Burns at Internet CFS-NEWS@LIST.NIH.GOV or by Fido NetMail to 1:109/432, or at telephone 1-202-966-8738, or postal address 2800 Quebec St NW, no. 1242, Washington DC 20008 USA, or post a message to the CFS echo or to the Internet CFS-L group or to newsgroup alt.med.cfs. Copyright (c) 1994 by Roger Burns. Per- mission is granted to excerpt this document if the source (CFS-NEWS Electronic Newsletter) is cited. Permission is also granted to reproduce the entirety of this document unaltered. This notice does not diminish the rights of others whose copyrighted material as so noted may be quoted herein. Note that Fido and Fidonet are registered marks of Tom Jennings and Fido Software. =================================================================== INTERNET users are encouraged to obtain the CFS-RES TXT resource file and other CFS files at the NYSDH file server. Send the command GET CFS-RES TXT (or for a full list of files, send GET CFS-D FILELIST) by Internet e-mail to the address LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU . Distribution of CFS-NEWS on the Internet is sponsored by the NIH Computing Utility. However, the content of this independent newsletter and the accuracy of the sources which it cites are solely the responsibility of Roger Burns. To subscribe, send the command SUB CFS-NEWS to the address LISTSERV@NIHLIST.BITNET or LISTSERV@LIST.NIH.GOV . To get back issues, send GET CFS-NEWS INDEX to either the Listserv at list.nih.gov or at the Albany address cited above, and follow the instructions in the file. Anonymous ftp available from list.nih.gov (128.231.64.10), directory cfs-news. ===================================================================== -------------------------------------------------------------------------------