(C)opyright 1995 RESCIND, Inc.
By Matt Straznitskas, Roger Burns, Lucie Dorais, Maryka Ford
(including info on updating or getting the
new version of MAY12PEN for PC users)
As you will discover from reading the text in this file, May 12th of each year has been designated as the International CFIDS/ME Awareness Day. In order for the world to be alerted to this devastating disease, it is crucial that those concerned about CFIDS/ME contact the government and media in conjunction with the MAY 12 event. This file is intended to help facilitate that action, as well as provide interesting background information about CFIDS/ME and Florence Nightingale.
This file is available in text (ASCII), PC (Hypertext), and Macintosh formats. The Macintosh version is available as a stand-alone, self-running document that will run on any Mac.
The illness, characterized by overwhelming fatigue, cognitive problems, and numerous flu-like symptoms, has been afflicting people around the world in alarming numbers. Throughout the 1980's, patients were generally dismissed by the medical profession as suffering from psychosomatic illnesses. However, as the illness began to spread throughout the population, some physicians began to see that this was indeed a very serious illness. Many CFIDS/ME victims were left in such a feeble state that they were too weak to even feed or bathe themselves. Sadly, the illness continues to spread unchecked with only a minor response thus far from government. In order to help intensify the response, the MAY 12 event was created.
It is important to note that the May 12th date was chosen to memorialize the birth date 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. Despite her illness, she managed to found the first ever School of Nursing. It is fitting that this determined woman of the late 19th century now shines as a ray of inspiration and hope to victims of CFIDS/ME in the late 20th century.
If a cause and cure are to be found for CFIDS/ME in the near future, government and medicine must be made fully aware of the scope of this illness. Despite the efforts of a number of dedicated groups and individuals, there are still vast pockets of ignorance and misunderstanding about CFIDS/ME. To this day, many patients run directly into a medical establishment that, in general, knows very little about this serious threat to human health. It is therefore crucial that all those affected by the illness make their voices heard, especially on May 12th of each year.
In the sections that follow, you will be presented with the names and addresses of various officials who should be contacted for the MAY 12 event, along with sample letters to those officials. You will also find a listing of prominent CFIDS/ME groups from around the world, many of whom will be sponsoring events in conjunction with the awareness day. Lastly, you will find more detailed information on the illness itself and a short biography on Florence Nightingale.
Whether you are active in May 12th events sponsored by various CFIDS/ME organizations, or use this information to be active on your own, the important thing is that you act. Together, we will turn the spotlight on CFIDS/ME!
Contacting government officials in your country on May 12th is essential. Short, friendly letters and faxes are said to be the best (see the sample letters in Chapter Four). Phone calls on May 12th can also be especially effective.
The list below contains names for USA, Canada, Britain, Australia and New Zealand government officials.
Members of Congress -- Identify your local representatives by referring to your local telephone book, or by calling your county Board of Elections or your public library. Please telephone or fax your local Congressperson at his/her local office. Contact your member in the House of Representatives and both of your state's two Senators. Or send them mail as follows:
Hon. (name of Senator)
United States Senate
Washington, DC 20510
or
Hon. (name of Congressperson)
United States House of Representatives
Washington, DC 20515
This year (1995) it will be particularly important to contact the appropriations decision-makers in the new Republican Congress, many of whom have not yet been sensitized to CFIDS/ME issues. Please write to the officials listed below.
Hon. Robert Livingston Chairman, Appropriations Committee Room 218 United States House of Representatives Washington, DC 20515 Hon. John Porter Chairman, Appropriations Subcommittee on Labor/HHS Room 2358, Rayburn Off. Bldg, U.S. House of Representatives Washington, DC 20515 Hon. Mark Hatfield Chairman, Appropriations Committee Room 128 United States Senate Washington, DC 20510 Hon. Arlen Specter Chairman, Appropriations Subcommittee on Labor/HHS 184 Dirksen Building United States Senate Washington, DC 20510 If you can, please contact the other officials below also. President William J. Clinton 1600 Pennsylvania Avenue NW Washington, DC 20500 public comment telephone line: (202) 456-1111 (9.00 am to 5.00 pm, Eastern time; bypass the survey and wait for an operator to take your comment) fax: (202) 456-2461 Donna Shalala Secretary of Health and Human Services 200 Independence Ave. SW Room 719H Washington, DC 20201 Telephone: (202) 690-6867 Fax: (202) 690-6608 Dr. Philip Lee Assistant Secretary for Health 200 Independence Ave. SW Room 617G Washington, DC 20270 Dr. Harold Varmus Director of the National Institutes of Health Bldg. 31 Room 2B25 9000 Rockville Pike Bethesda, MD 20892 Telephone: (301) 496-2535 Fax: (301) 496-0017 Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases Bldg. 31 Room 7803 9000 Rockville Pike Bethesda, MD 20892 Telephone: (301) 496-5717 Fax: (301) 496-0017 Dr. David Satcher Director of the Centers for Disease Control and Prevention MS-A23 1600 Clifton Road NE Atlanta, GA 30333 Telephone: (404) 639-3534CANADA
The Right Honourable Jean Chretien Prime Minister's Office Langevin Block 80 Wellington Street Ottawa, Ontario K1A 0A2 Telephone: (613) 992-4211 Fax: (613) 941-6900 The Honourable Diane Marleau Minister of Health Jeanne Mance Building Tunney's Pasture Ottawa, Ontario K1A 0K9 Telephone: (613) 957-0200 Fax: (613) 952-1154 Pension issues have been delegated to the Minister for Human Resources and Labor: The Honourable Lloyd Axworthy Minister for Human Resources and Labor 140 Promenade du Portage Phase 4, 14th floor Hull, Quebec K1A 0J9 Telephone: (819) 994-2482 Fax: (819) 994-0448 It is also important in Canada to contact public health officials at the provincial level. The mailing addresses for the Prime Ministers and Ministers of Health of Great Britain, Australia and New Zealand are as follow:BRITAIN
The Right Honourable John Major, MP, Prime Minister First Lord of the Treasury House of Commons, Westminster London SW1A 0AA The Honourable Virginia Bottomley, GP, MP Department of Health, Richmond House 79 Whitehall London SW1A 2NSAUSTRALIA
The Honourable Paul Keating, Prime Minister Parliament House Canberra, ACT 26000 Senator Graham Richardson, Minister of Health Parliament House Canberra, ACT 26000NEW ZEALAND
The Right Honourable Jim Bolger, Prime Minister Parliament Buildings, Executive Wings Wellington The Honourable Jenny Shipley, Minister of Health Parliament Buildings, Executive Wings Wellington It is also important, in these countries, to contact public health officials at the provincial level if it applies.
National media outlets usually take a long time to develop a story, so it is important to write them well before the MAY 12 event (February to March). Please write to as many outlets as you can (see the sample letter in Chapter Four). It is also crucial that you contact your local media outlets (television, radio, newspapers, etc.) from March to April to intensify the media's attention to MAY 12 and CFIDS/ME.
When addressing letters to the media outlets in your country listed below (except where specifically noted otherwise), the attention line in the following addresses should read:
Attention: National News Story Editor
The list below contains names of the main media and television programs in USA, Canada, Britain and Australia.
USA
CBS TV News 524 West 57th Street New York, NY 10019 60 Minutes 524 West 57th Street New York, NY 10019 Eye to Eye with Connie Chung 524 West 57th Street New York, NY 10019 48 Hours 524 West 57th Street New York, NY 10019 CBS Evening News 524 West 57th Street New York, NY 10019 CBS This Morning 524 West 57th Street New York, NY 10019 ABC TV News 47 W. 66th St. New York, NY 10023 ABC World News Tonight 47 W. 66th St. New York, NY 10023 Good Morning America 47 W. 66th St. New York, NY 10023 ABC World News Now 47 W. 66th St. New York, NY 10023 Day One 147 Columbus Avenue New York, NY 10023 20 / 20 147 Columbus Avenue New York, NY 10023 Nightline 1717 DeSales Street Washington, DC 20036 Prime Time Live 1717 DeSales Street Washington, DC 20036 NBC News 30 Rockefeller Plaza New York, NY 10102 Today Show 30 Rockefeller Plaza New York, NY 10102 NBC News Nightside 30 Rockefeller Plaza New York, NY 10102 NBC Nightly News 30 Rockefeller Plaza New York, NY 10102 NOW 30 Rockefeller Plaza New York, NY 10102 Dateline 30 Rockefeller Plaza New York, NY 10102 Dan Rutz News From Medicine CNN #1 CNN Center P.O. Box 105366 Atlanta, GA 30348-5366 Associated Press 50 Rockefeller Plaza New York, NY 10020 Stuart Schear Health and Science Producer MacNeil/Lehrer News Hour 356 West 58th Street New York, NY 10019 National Public Radio Attention: Science Desk Deputy Editor Peggy Girshman 2025 M Street N.W. Washington, DC 20036 National Public Radio Talk of the Nation 2025 M Street N.W. Washington, DC 20036 TIME Magazine Time-Life Building Rockefeller Center New York, NY 10020 NEWSWEEK Magazine 444 Madison Avenue New York, NY 10022 US News & World Report 2400 N Street N.W. Washington, DC 20037 USA TODAY PO Box 500 Washington, DC 20044 Lawrence Altman The New York Times 229 West 43rd Street New York, NY 10036 The Wall Street Journal 200 Liberty Street New York, NY 10281CANADA
The Health Show - CBC Newsworld Attention: The Producer PO Box 500, Station "A" Toronto, Ont. M5W 1E6 Medicine File - CBC Newsworld Attention: Mrs. Jennifer Guy, Producer PO Box 500, Station "A" Toronto, Ont. M5W 1E6 The 5th Estate - CBC Attention: The Producer PO Box 500, Station "A" Toronto, Ont. M5W 1E6 Le Point - SRC Attention: The Producer 1400, boulevard Rene-Levesque Est Montreal, Que. H2L 2M2 W5 - CTV Attention: the Producer 42 Charles Street Toronto, Ont. M4Y 1T5 McLean's Magazine Attention: Health issues editor 777 Bay Street Toronto, Ont. M5W 1A7 L'Actualite Yanick Villedieu, chronique Sante 1001, boul. de Maisonneuve Ouest Montreal, Que. H3A 3E1 Time Magazine 1 Bower Avenue Ottawa, Ont. K1S 0J9 The Canadian Press Attention: Health issues editor 36 King Street East Toronto M5C 2L9BRITAIN
BBC TV Center Dept. of Health Wood Lane Shepherd's Bush London W12 7RJ BBC Broadcasting House Portland Place London WC2B 4PH Reuters News Service 85 Fleet Street London EC4P 4AJ The Economist Magazine 25 St. James Street London SW1A 1HG BBC Educational Director of Education: DR. Eurfron Gwynne Jones Head of Educational Policy & Services: Lucia Jones BBC White City, 201 Wood Lane, London W12 7TS CHANNEL 4 60 Charlotte Street, London W1P 2AX [Attention: Commissioning Editors Science, Business & Features: Michael Attwell News & Current affairs: David Lloyd Documentaries: Peter Moore Education: Karen Brown] ITN (Independent Television News) 200 Gray's Inn Road, London WC1X 8XZ [Attention: ITV Editor, David Mannion] [Attention: Channel 4 Editor, Richard Tate] CNN (Cable News Network) CNN House, 19-22 Rathbone place, London W1P 1DF Sky News (B SKY B) 6 Centaurs Park, Grant Way, Isleworth, Middlesex TW7 5QDAUSTRALIA
Australian Broadcasting Corporation GPO Box 9994 Sydney, NSW 2001 7 Network ATN TV Center Mobbs Lane Epping, NSW 2121 Network 9 News 27 Artarmon Road Sydney, NSW 2068 Network 10 44 Bay Street Ultimo, NSW 2007 The Australian GPO Box 4162 Sydney NSW 2001 TIME Australia Level 7, 469 Latrobe Melbourne, VIC 3000
The following are two sample letters regarding the need for attention to CFIDS/ME matters. The first is intended for government officials, while the second is aimed at media outlets. Feel free to write your own, more personal letter if you prefer.
Dear (name):
Since you are an influential official who can demand a great deal of attention to specific issues, I am writing to inform you that May 12th of this year has been designated as the International Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)/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 illness that is striking a growing number of people around the world-a fact to which I can sadly personally attest.
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. The toll that this sudden disability takes on families, not to mention the national economy, is enormous.
It is important to note that the May 12th date was chosen to memorialize the birth date 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 cause and cure are to be found for CFIDS/ME in the near future, government and medicine must respond MUCH more vigorously. I implore you to use your substantial power as a public servant to see that this happens. May 12th of this year should mark the beginning of a new era of thorough medical investigation into Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalomyelitis.
Sincerely yours,
(name)
NOTE: if you write to a President or a Prime Minister, you should address the letter to "Dear Mr. President:" or "Dear Mr. Prime Minister:" and then end it with "Yours faithfully,". All the other persons can be addressed as "Dear Mr. ..." or "Dear Mrs. ...".
Dear (name),
I would like to suggest coverage of a very serious illness for your upcoming May planning to coincide with the May 12, International Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)/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 illness that is striking a growing number of people around the 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 birth date 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 cause and cure are 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 affected by this illness, to shed light on CFIDS/ME on May 12th.
Sincerely yours,
(name)
NOTE: if you don't know the name of the person, you can use the formula "Dear Sir or Madam:", or "To whom it may concern:".
USA
CFIDS Association of America, telephone: (800) 442-3437 CFIDS Activation Network, telephone: (212) 627-5631CANADA
National ME/FM Action Network, telephone: (613) 829-6667 Nightingale Research Foundation, telephone: (613) 728-9643 M.E. Association, telephone: (613) 563-1565BRITAIN
Myalgic Encephalomyelitis Association, telephone: 44-0375-642466 Action for M.E., telephone: 44-0749-670799AUSTRALIA
ME/CFS Society of New South Wales, telephone: 61-2-439-6026 ME/CFS Society of Victoria, telephone: 61-3-888-8991 ME/CFS Society of South Australia, telephone: 61-8-373-2110 ME Syndrome Society of Queensland, telephone: 61-75-73-2772 CFS Society of Western Australia, telephone: 61-09-483-6667
This guide, published by The CFIDS Association of America, Inc. and reproduced here with permission, addresses many questions about CFIDS/ME.
CFIDS (chronic fatigue and immune dysfunction syndrome) is also known as CFS (chronic fatigue syndrome), CEBV (chronic Epstein-Barr virus), M.E. (myalgic encephalomyelitis), "yuppie flu" and many other names. It is a complex illness characterized by incapacitating fatigue (experienced as exhaustion and extremely poor stamina), neurological problems and a constellation of symptoms that can resemble other disorders, including: mononucleosis, multiple sclerosis, fibromyalgia, AIDS-related complex (ARC), Lyme disease, post-polio syndrome and autoimmune diseases such as lupus. These symptoms tend to wax and wane but are often severely debilitating and may last for many months or years. All segments of the population (including children) are at risk, but women under the age of 45 seem to be the most susceptible.
Research suggests that CFIDS results from a dysfunction of the immune system. The exact nature of this dysfunction is not yet well defined, but it can generally be viewed as an up-regulated or overactive state (which is responsible for many of the symptoms). Ironically, there is also evidence of some immune suppression in CFIDS; patients exhibit certain down-regulated signs. For example, in many patients there are functional deficiencies in natural killer cells (an important component of the immune system responsible for fighting viruses).
Based on physical and laboratory findings, many scientists believe that viruses are associated with CFIDS and may be directly involved in causing the disease. Since the discovery (or rediscovery) of CFIDS in the United States in the mid-1980s, several viruses have been -- and continue to be -- studied to determine what, if any, part they play in the disease. These include enteroviruses, herpesviruses (especially human herpesvirus-6 or HHV-6) and newly discovered retroviruses.
In the first few years of this research, it was thought that the Epstein-Barr virus (EBV), a herpesvirus that causes mononucleosis, was the cause of this syndrome. However, researchers now believe that EBV activation (when it exists) is a result or complication of CFIDS rather than its cause. To date, no virus has been conclusively shown to be an essential element of CFIDS.
Accordingly, research efforts are still directed toward identifying and isolating the fundamental agent(s) responsible for triggering immune system disruption in persons with CFIDS (PWCs). Additionally, there are on-going studies of immunologic, neurologic, endocrinologic and metabolic abnormalities and risk factors (such as genetic predisposition, age, sex, prior illness, other viruses, environment and stress) which appear to play an important role in the development and course of the illness. For further information see this and past issues of The CFIDS Chronicle which report extensively on many aspects of CFIDS research and/or call The CFIDS Information Line (900/896-2343).
Many physicians have based their diagnosis of CFIDS on a "working case definition" developed for research use by the Centers for Disease Control (CDC) and published in the March 1988 Annals of Internal Medicine. This definition, however, did not effectively distinguish between CFIDS patients and other groups of people with fatiguing illnesses. In 1993, a working group of internationally recognized CF(ID)S researchers was assembled by CDC to revise the case definition. "The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study" was published in the December 15, 1994 issue of Annals of Internal Medicine.
Guidelines for the evaluation and study of CF(ID)S as outlined in the "revised case definition" follow:
A thorough medical history, physical examination, mental status examination and laboratory tests must be conducted to identify underlying or contributing conditions that require treatment. Diagnosis or classification cannot be made without such an evaluation. Clinically evaluated, unexplained chronic fatigue cases can classified as chronic fatigue syndrome if the patient meets both the following criteria:
1. Clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (i.e., not lifelong), is not the result of ongoing exertion, is not substantially alleviated by rest and results insubstantial reduction in previous levels of occupational, educational, social or personal activities.
2. The concurrent occurrence of four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without joint swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours. These symptoms must have persisted or recurred during six or more consecutive months of illness and must not have pre-dated the fatigue.
Although the CDC case definition is in some sense "official" (and legitimizes the illness), it is considered provisional because it is based on the exclusion of other diseases and on symptoms which can be produced by other diseases. Pioneering CFIDS clinicians and researchers are making great strides in identifying specific objective markers for diagnosing CFIDS and for assessing patient treatment response. As reported in this and past issues of The CFIDS Chronicle (see especially, "CFIDS: The Diagnosis of a Distinct Illness," September 1992), physicians and scientists are developing an array of tests which are increasingly sensitive to and specific for CFIDS. As the cause and mechanism of this disease become clear, so will the clinical and laboratory parameters which define CFIDS. Ultimately, conclusive diagnostic standards will be developed and accepted.
Unfortunately, many physicians are not very familiar with CFIDS and have difficulty diagnosing it. Others still do not even know that the illness exists. As a result, PWCs are often misdiagnosed, sometimes as having a psychosomatic or affective disorder because such conditions are also diagnosed by exclusion in many cases.
PWCs experience symptoms which tend to be individualistic and to fluctuate in severity. The primary eight symptoms described in the CDC's revised case definition are listed above. Further symptoms common to CFIDS could include other cognitive function problems (such as spatial disorientation and impairment of speech and/or reasoning); visual disturbances (blurring, sensitivity to light, eye pain, frequent prescription changes); psychological problems (depression, anxiety, panic attacks, personality changes, emotional lability); chills and night sweats; shortness of breath; dizziness and balance problems; sensitivity to heat and cold; intolerance of alcohol; irregular heartbeat; abdominal pain, diarrhea, irritable bowel; low temperature; numbness of or burning in the face or extremities; dryness of the mouth and eyes (sicca syndrome); hearing disorders or sensitivity; menstrual problems including PMS and endometriosis; hypersensitivity of the skin; chest pains; rashes; allergies and sensitivities to odors, chemicals and medications; weight changes without changes in diet; hair loss; light-headedness -- feeling "in a fog"; fainting; muscle twitching; and seizures.
No primary therapy has been proven to cure CFIDS. Some symptoms can frequently be alleviated by prescription drugs, but these must be carefully tailored to the needs of each individual and often must be taken in unusually low dosages. (An experimental drug has been tested in limited clinical trials. While the results were encouraging, further trials must be conducted and evaluated before the drug can be approved.) Also, avoidance of environmental irritants and certain foods can sometimes relieve symptoms and many PWCs claim to have benefited from nutritional therapies. A significant percentage of PWCs show marked improvement over time, but many remain ill or cycle through a continuing series of remissions and relapses. The symptoms in severely-affected PWCs can be devastating and result in prolonged interruption of work and family life. Some researchers believe that PWCs may also be at greater risk of developing other illnesses. However, the extent to which CFIDS may be progressive or degenerative is not yet known. For additional information on treatment options and prognosis see The CFIDS Chronicle or call The CFIDS Information Line.
It is likely that the agent(s) that trigger CFIDS are transmissible. CFIDS has been reported in many children and monogamous adults and "clustering" of cases in families, workplaces and communities also seems to occur. Whether a person develops CFIDS is believed to be a function of how his/her system deals with the causative agent(s). However, most people in close contact with CFIDS patients have not developed the illness. Most clinicians and researchers agree that persons with CFIDS should refrain from donating blood, blood products or organs until the mode of transmission in CFIDS is better understood.
Persons with CFIDS must identify their limits and learn to operate within them. Symptoms tend to be aggravated by physical or emotional stress and improved by rest. Those who accept the fact that they have a chronic illness and regulate their lives accordingly generally cope better than those who deny the reality of their illness. Many PWCs overcome the sense of isolation and helplessness common to the disease by joining support groups and working to help each other. In telephone calls, newsletters, journals and at meetings and conferences they share experiences, exchange information and learn from each other. PWCs often find an equilibrium point at which they can function. As in combating any chronic illness, a positive, hopeful attitude is essential.
Finding a physician knowledgeable about CFIDS can be difficult. The symptoms are not organ specific and no single medical discipline has embraced the disease. Individuals who have been diagnosed with CFIDS are excellent sources of referrals and a Physicians Honor Roll of CFIDS clinicians (nominated by their patients) is available from The CFIDS Association of America. In addition, a list of physicians knowledgeable about CFIDS is maintained by most local support groups. However, if you already have a good relationship with a doctor, you should urge him/her to develop an understanding of this disease -- perhaps by sending him or her several issues of The CFIDS Chronicle.
The CFIDS movement is driven by PWCs seeking to help themselves and others with the disease. Please join us and the many thousands striving to overcome CFIDS. Fight back! Contribute! Volunteer! Attend or establish a local support group. Write to members of Congress or the media. Become a member of The CFIDS Association of America, Inc. Our objectives are to encourage and inform PWCs, their physicians, families and friends; to lead efforts to secure a more dedicated response to CFIDS from the federal government; and to fund increased research into the mechanism and treatment of CFIDS. We are a non-profit organization governed by an all volunteer board of directors comprised of PWCs and professionals. We publish the largest CFIDS journal in the nation, The CFIDS Chronicle, and directly fund CFIDS research and CFIDS advocacy efforts. All funds contributed to The CFIDS Association of America, Inc. for a specific valid CFIDS purpose are so allocated -- 100%!
Produced and distributed by The CFIDS Association of America, Inc., PO Box 220398, Charlotte, North Carolina 28222-0398, 800/442-3437, The CFIDS Information Line 900/896-2343 ($2 for first minute; $1 for each additional minute), FAX 704/365-9755. Edited by Paul R. Cheney, MD, PhD, Charles W. Lapp, MD and David S. Bell, MD, medical consultants to The CFIDS Association of America, Inc. Some of the information contained herein is intended to help PWCs make informed decisions about their health. For medical advice, please consult with your physician. Revised 1/95
Florence Nightingale lived a long and remarkable life. Although she is known as the founder of modern nursing and one of the most famous women in history, few people know that she spent the last half of her life confined to her home and often bedridden, suffering from an illness similar to what we now call chronic fatigue and immune dysfunction syndrome (CFIDS) or myalgic encephalomyelitis (ME).
She was born on May 12, 1820 to wealthy British parents travelling in Italy. Named for the city in which she was born, young Florence never quite fit the mold of a Victorian lady. She was well educated in literature, music, drawing and the domestic arts. A women of her social standing was expected to marry and devote her life to her family, entertaining, and cultural pursuits. However, she felt an early calling to serve, and refused to marry. When she attempted to go to work as a nurse, her horrified family repeatedly opposed her. In those days, hospitals were often dirty and dark and nurses were untrained, sometimes drunken women. Finally, at age 33 she was able to obtain some minimal training and begin her career.
In 1854, the British press began reporting that soldiers wounded in the Crimean War were being poorly cared for in deplorable conditions. Nightingale recruited and equipped a group of nurses and went off to Turkey to help. Her arrival was not celebrated by the surgeons there, who resented the interference of a woman. Undaunted, she worked tirelessly to improve conditions in the hospital. Her changes revolutionized British military medical care, increasing standards for sanitation and nutrition and dramatically lowering mortality rates. While visiting the front lines, she became ill and never really recovered.
Although an invalid for the rest of her life, Nightingale continued to have an influence on standards of nursing care and training. In 1859 she helped to establish the first Visiting Nurse Association and in 1860, she established a school that became a model for modern nurses training. She was considered an expert on the scientific care of the sick and was asked by the United States for her advice on caring for the wounded soldiers of the Civil War. Through correspondence and reports, she continued her influence throughout her last years. She was the first women to receive the British Order of Merit. In 1907 the International Conference of Red Cross Societies listed her as a pioneer of the Red Cross Movement. She died in 1910 at the age of ninety.
Florence Nightingale was known by the British soldiers in the Crimea as the "lady with the lamp" because of the late hours that she worked tending to the sick and wounded. Today, she is remembered as a symbol of selfless caring and tireless service.
MAY 12 Electronic Resources
If you have comments or desire more information on MAY 12 electronic resources, please contact Lucie Dorais at email address:
Lucie is a Canadian CFIDS/ME patient and computer programmer who has authored the PC DOS software MAY 12 PEN. The software was specially written to automate the process of writing the two sample letters of Chapter 4.
It uses a database containing the complete list of the government officials mentioned in Chapter Two and the complete list of the media outlets mentioned in Chapter Three. You can add, delete or modify the database records to suit your own needs. The information concerning the persons writing the letters is also kept in a database. The text of the letters is the same as in Chapter Four, but can be edited within the constrains of a one page letter.
To write a letter, you simply press "A" to pick an Addressee, "S" to pick a Signature, then "P" to print the letter (or "K" to save it to disk for later printing or editing with a word processor). All that is left to you is to sign the letter and address the envelope (envelopes addressed by hand have more impact...).
Look for MAY12PEN.ZIP on your favorite network. As of this writing, there is not a version of the letter writing automation software available for Macintosh computers. If you are a Mac programmer and interested in volunteering for such a project, contact Lucie at the email address above.
A revised edition of MAY 12 PEN is being released for 1995 (ver. 1.5); it has many small enhancements, and two big ones: a) you can now List all the letters dones to the screen as well as to a printer b) if you have edited one or both letters, the Help/Gov[Media] letter will tell you on screen if your lines and/or letter are too long to fit MAY12PEN.
The new version comes with this year's list of Addressees; the list is the same as last year, except for the addition of five names: Dr Philip Lee, and the four members of the Appropriations Committee/Subcommittee.
If you have used MAY 12 PEN last year with United States data, you have many choices:
1) Use the program's database functions to manually Add those five names
to your Addressee database.
2) Get the small MAY12UPD.ZIP files, which contains all you need to auto-
matically insert the new names in your current Addressee database.
3) Get the new version, it will work with last year's databases
(MAY12ADR.DAT and MAY12SIG.DAT), but you will also need to chose
between 1 and 2 above.
If you are Canadian and will be using last year's version, please make the following modification to the Addressee database: for L'Actualite [Media], the Salutation should be "Monsieur Villedieu" instead of "Mrs. Villedieu".
RESCIND, Inc.
RESCIND (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases), Inc. is a volunteer organization that promotes the MAY 12 event each year. For more information, contact:
RESCIND, Inc. 9812 Falls Road Suite 114-270 Potomac, MD 20854, USA
Fax: (301) 983-5644 (after 6 p.m.) Internet email: MAY12@AMERICAN.EDU
MAY 12/95 Action Information: Last Updated: April 2 1995 2:30am
