From: "Nancy S in MA" CFS Common Names and Abbreviations, and Timeline The following list of common names and abbreviations are split into five groups: Time line of events Organizations, agencies, government People Medical terms Computer and other common abbreviations ------------------------------------------------------------- TIME LINE OF EVENTS [There are many historical medical events that relate to a CFS-like illness. For details, see the CFS text edited by Dr. Byron Hyde, pp. 176-89.] 1934 -- outbreak at Los Angeles County Hospital 1956 -- outbreak at Royal Free Hospital, Britain 1956 -- the term "myalgic encephalomyelitis" is coined by Dr. Melvin Ramsey and Dr. John Richardson of (WHO). Is published in the medical journal Lancet (U.K.) 1980-1984 -- Cluster outbreak of Adeno-Virus at Children's Hospital San Diego, kills 6 children in 1980...continues every August to cause staff to be sick and leave careers for good 1984 -- Outbreak at Lake Tahoe, Nevada USA, investigated by local doctors Paul Cheney and Dan Peterson; this outbreak brings attention to the illness in the USA 1985 -- Cluster outbreak in Lyndonville New York, with children...Dr. David Bell. 1986 -- CACTUS, San Fransisco based lobbying organization, run by Joan Sutherland. Shuts down in 1993. 1986 -- Jan Montgomery and Marya Grambs form together with CACTUS and start the San Francisco CFIDS Support group. It closes in 1995. 1987 -- Name "Chronic Epstein-Barr Syndrome" is used for a while due to the Lake Tahoe outbreak common Virus was EBV. 1988 -- Yuppie Flu is common name now along with Chronic EBV. 1988 -- C.D.C. develops first working case definition for CFS, chooses the name "chronic fatigue syndrome". Most people in this committee are against the name including Dr. Alexis Shelekov (NIH and Salk Institute, discovered Polio and Ebola and Adeno Viruses, close friend to Dr. Philip R. Lee). CDC, barely gets the majority vote for the Working Definition of this "new" disease. Others want Myalgic Encephalomyelitis as it is already known in the World Health Organization (WHO) and is known in the United Kingdom and Canada and Australia already. 1988 -- News media is very disparaging of CFS 1990 -- CACTUS schedules own meeting on retroviruses for the first Saturday of September in San Francisco, California Health officials attend along with Dr. Elaine DeFreitas, Dr. Cheney, Dr. Jay Levy, Dr. Nancy Klimas, Dr. Phillip R. Lee. 1990 -- Dr. George Rutherford, an infectious disease specialist and epidemiologist, had served as chief of AIDS epidemiology for the city of San Francisco during the first years of the AIDS epidemic. Grows increasingly concerned about CFS, "I think the city's experience with AIDS made people highly sensitive to making a big mistake with regard to another infectious disease." 1990 -- Virologist Dr. Elaine DeFreitas posits link between CFS and mystery virus, CDC disputes findings; great controversy is stirred, the research work is never completed. Dr. DeFreitas suggests that there are HTLV II particles in all patients that she has tested, however this does not mean it is a NEW virus. Could be genetic material. Never claimed that this was a New disease. 1992 -- Jane Perlmutter, director of CAN (CFIDS Activation Network, New York), starts Blue Ribbbon Awareness. April 1991 -- Joan Sutherland director of CACTUS has Dr. Elaine DeFreitas and Dr. Hilary Kropowski from the Wistar Institute testify for the first time in front of Congress with the strong help from Senator Ted Kennedy.. "Some scientists call this AIDS-non HIV". June 1991 -- CACTUS member and Medical Professional Meghan Shannon, sick from the cluster outbreak at Children's Hospital in San Diego in 1982-1983, testifies before the Office Of Research for Women and Health, NIH. First time medical professionals are considered high risk in the USA. The United Kingdom had already seen that health care workers (including teachers in definition) were at the highest risk. 1991 -- Barry Sleight, volunteer lobbyist, monitored as best he could what he privately called the "malfeasance and nonfeasance" at both agencies (NIH & CDC), composed a three-page memo about the history of the CFS research agenda for a well-known lobbyist, Tom Sheridan, a well known AIDS lobbyist. 1991 -- Low cortisol is found in CFS patients by Dr. Demitrack 1992 -- First of bi-annual medical/research conferences of the American Association for Chronic Fatigue Syndrome (AACFS), future conferences are held in Ft. Lauderdale, FL (1994), San Francisco (1996) and Boston (actually Cambridge, Mass., in 1998) Summer 1993 -- Dr. Philip R. Lee nominated as Assistant Secretary for Health and Human Services. His 2nd time; first term was January 1964, he develops Medicaid under the Johnson Administration. Was hired by President John F. Kennedy shortly before he is assassinated. 1993 -- May 12 Awareness Day is invented by Tom Hennassey, soon adopted worldwide October 1993 -- "International Conference and Hearing" held at CDC regarding CFS/ME. Two day conference. The new interim director for CFS since Dr. Walter Gunn resigned at the CDC is Dr. William Reeves, Jr. and Dr. Mahy, run this meeting. Dr. Byron Hyde give an impassioned speech about the name CFS and is angry that several of the Panel Members are obviously biased against the disease and think it is psychological. They were, Dr. Stephen Strauss and Dr. Lillian Abbey. Tom Hennessey of RESCIND and Meghan Shannon MPWC's follow in separate speeches starting with CHANGE THE NAME!!! 1993 -- CDC holds meeting on definition issues regarding CFS Fall of 1994 -- Dr. Philip R. Lee meets for the first time with Inter-agencies and four patient representatives for CFS, chosen by Dr. Paul Levine. Patient representatives were, Marya Grambs (San Francisco CFIDS Support Group), Kim Kenney (CAA), Orvaline Prewitt (Kansas CFIDS support Group) and Judy Baso (also from Kansas Support group but lives in Minnesota). 1994 -- First European medical/research conferences is held in Dublin. 1994 -- Possible urine bio marker for CFS is discovered by research team in Newcastle, Australia 1994 -- CDC revises, loosens research definition, retains the name "chronic fatigue syndrome" April 1994 -- Open Interagency Meeting for public to testify with Dr. Philip R. Lee. Held in Dr. Lee's office, very small group. Again the name change comes up, Dr. William Reeves says that ME is inappropriate, we can't prove inflammation. Shuts down the name change in this meeting, not without Dr. Lee suggesting that we need a new name. November 1995 -- "First World Congress on CFS and Related Immune Disorders", Brussels, Belgium. Dr. Peter Behan (Scotland) and Dr. Kenny DeMeirlier, responsible for this. The USA is now in Europe. One American patient representative presents from the Medical Professional with CFIDS, Meghan Shannon. CAA refuses to go to Belgium but hold their own conference two weeks prior to the World Congress, splitting the medical community in America as to which conference they attend. November 1995 -- Brussels BRAME (young patient Tanya Harrison launches Blue Ribbon Awareness Campain in First World Congress, 20 countries. Also May 12th becomes known Internationally credited to Tom Hennessey, and Tanya finds Jane Perlmutter to thank her for the Blue Ribbon Awareness Idea. 1995 -- Johns Hopkins medical researchers find link between CFS and neurally mediated hypotension (NMH) April 1995 -- Interagency meeting in Dr. Lee's Office; this time over 100 patients attend, room is too small for this meeting. Dr. Lee suggests that CFS be Chartered Illness. Dr. Reeves questions why. Dr. Lee responds that we are in an election year and this illness needs to be protected so that the Inter-agencies continue to meet. The beginning of the CFSCC. 1996 -- Book "Osler's Web" by Hillary Johnson is published, chronicles and condemns the medical establishment's response to CFS April 1996 -- CFSCC meeting, Osler's Web is distributed by Tom Hennessey. MPWC Meghan Shannon asks for investigation of misappropriations of funds and the removal of Dr. William Reeves, Dr. Stephen Straus from all work in the government that deals with CFS. April 1996 -- Monday after CFSCC meeting, Congressman Nadler (New York), requests an investigation into misappropriations of funds. 1996 -- Possible medical breakthrough found in RNase-L enzyme dysfunction, this might be a biomarker for CFS; research done by Temple University scientific team led by Dr. Robert Suhadolnik 1996 -- Case of assisted suicide of American CFS patient (Judith Curren) stirs furor 1996 -- Britain's Royal Colleges Report gives a psychiatric view of CFS/ME Book in the United Kingdom, by Jane Colby (former Headmistress of school in England) "ME The New Plague". 1997 -- Literature professor Elaine Showalter publishes book which claims that CFS is a form of hysteria 1997 -- Cognitive behavioral therapy (CBT) is promoted for CFS in several publications by British psychiatrists September 18, 1997 -- U.S. physician education program is broadcast via satellite, its effectiveness is later questioned. Dr. Paul Levine and Dr. Dedra Buchwald approach the CDC producer of this Public Service Education Program and ask that all inquiries for copies of the Video be directed to AACFS in Seattle, they charge 29.95 for copy. This is against Public Education rules. May 14, 1998 -- BRAME in Parliament. American BRAME and MPWC speak out to 53 Members of Parliament. As a result a new Working Group of United Kingdom National Health is started (though it is still run by the old working group, Dr. Simon Wessely). Former WHO doctor Dr. John Richardson (partner to Dr. Melvin Ramsey) speaks and Dr. Betty Dowsett, also partner to Dr. Richardson and Ramsey...ME champion Doctors. May 1998 -- Start of new Working Party of Members of Parliament (MP's) to address the issues of ME patients due to the BRAME meeting and MP Tony Wright. February 1998 -- Sydney medical conference on CFS/ME, may be beginning of annual conferences in Australia 1998 -- CDC administrator Brian Mahy accused of diverting CFS research funds 1998 -- Britain's Chief Medical Officer announces formation of working group to address CFS clinical guideline 1998 -- Book "ME The New Plague" updated 1998 -- Low blood volume linked to CFS by Drs. Bell and Streeten 1999 -- Possible fibromyalgia biomarker found by researchers at Tulane Univ. 1999 -- Name-change backed by U.S. CFS Coordinating Committee 1999 -- CDC financial scandal confirmed by Inspector-General ------------------------------------------------------------- Organizations, agencies, government CAA -- CFIDS Association of America CDC -- Centers for Disease Control and Prevention (USA agency), responsible for estimating prevalence rates and making epidemiological studies CFSCC -- CFS Coordinating Committee, group within U.S. Dept. of HHS that is supposed to coordinate all CFS activities by U.S. government agencies (CDC, NIH, Social Security Administration, etc.) CSSA -- Chronic Syndrome Support Assn., Inc. (1997) Founder, Nancy Solo DHHS or HHS -- Dept. of Health and Human Services (USA agency) FDA -- Food and Drug Adminstration; a USA agency which regulates drug approvals, nutritional supplements, and food quality and labeling NCF -- National CFIDS Foundation (USA), founder Gail Kansky MPWC -- Medical Professionals with CFIDS, (1992) Co-Founders, Gail Dahlen and Meghan Shannon, former member of CACTUS and Members of CAA. NHS -- Britain's National Health Service NIH -- National Institutes of Health (USA agency); largest medical research institution in the world RESCIND -- Repeal Existing Stereotypes about Chronic Immunologocal and Neurological Diseases, the organization whose president Tom Hennessey invented May 12 International Awareness Day. SSA -- Social Security Adminstration (USA agency), responsible for retirement and disability benefits WECAN -- Worldwide Electronic CFIDS/M.E. Action Network, Founder Mary Schweitzer. ------------------------------------------------------------- People Lillian Abbey -- staff person for CFS Coordinating Committee (see CFSCC below under Organizations) Michelle Akers -- world's greatest woman soccer player, is a CFS patient, Questionable as other Olympic athletes such as M. Devers (gold medal runner) and Janet Evens (gold medalist in late 1980's early 1990's drops out for five years with severe Mono. She returns in the summer of 1997, and is the USA Olympic torch holder who hands torch over to the Boxing Champ Mohammed Ali). Nancy Angsten -- moderator for CFIDS-L Gayle Babykin -- president of WECAN Dr. David Bell -- long-time CFS clinician, author, recently taught at Harvard Medical School, research on low blood volume Dr. Peter Behan and Dr. Willamena Behan -- Experts in ME, Scotland. Dr. Richard Bruno -- Director, Post-Polio Rehabilitation and research Service, Kessler Institute Rehabilitation, New Jersey. Chair person for International Post-Polio Task Force. Director for "Kids with Fatigue". Roger Burns -- founded Internet CFS groups in 1992, publisher of CFS-NEWS, promoter of name-change, manages CFIDS-L list Dr. William Carter -- president of Hemispherx Biopharma, the manufacturer of the controversial drug Ampligen Dr. Paul Cheney -- long-time CFS clinician, considered a pioneer, investigated Nevada outbreak in 1984 Cher -- pop singer, actress who is in recovery from CFS Lori Clovis -- Former Northwest Coordinator of RESCIND. Editor for MPWC's Newsletter. Jane Colby -- Author of "ME The New Plague" printed and bound in Great Britain by the Ipswich Book Company Ltd. Nacton Rd, Ipswich, IP3 9QR Ray Colliton -- manager of CO-CURE Project Gail Dahlen RN -- Co-Founder of MPWC/ME's (Medical Professionals with CFS/ME) Charles Darwin -- had ME like illness most of his life. Dr. Elaine DeFreitas -- Former researcher at the Wistar Institute with Dr. Hilary Kropowski. Worked on HIV/AIDS, MS and later CFS at the request of Dr. David Bell. Dr. Betty Dowsett -- consultant microbiologist and ME specialist. Partner to Dr. John Richardson and Dr. Melvin Ramsey. Essex England. Still works for free for patients with ME, retired in early 60's. (8/99) Blake Edwards -- Film Producer, married to actress Julie Andrews, supporter for awareness for CFS/ME. Still ill since 1983, though he works sometimes. Tim Flannery -- former Padres player in the world series, twice as a player, now sick. Is third base coach for Padres now and speaks out for CFS/ME. Still sick. Marya Grambs -- Co-Founder of the S.F. CFIDS Support Group and one of the first four patient representatives for the Interagency Coordinating Committees of the HHS, USA. Chris (mother) and Tanya (young person with ME) Harrison -- Started the International Blue Ribbon Awareness campaign for ME (1994) Tom Hennessy -- invented May 12 Awareness Day, founder of RESCIND, promoter of name-change Ali Hunter (young person from Australia and BRAME who died) -- Chris Hunter (mother) developed the international Conference of ME/CFS in February 1999. Marc Iverson -- president and founder of CFIDS Association of America Keith Jarrett -- renowned jazz pianist who has CFS Hillary Johnson -- author of book "Osler's Web" (1996) which chronicles and condemns the medical establishment's response to CFS Gail Kansky -- president and founder of National CFIDS Foundation Kim Kenney -- executive director of CFIDS Association of America Dr. Nancy Klimas -- CFS researcher, immunologist, often speaks up for CFS patients Dr. Anthony Komaroff -- CFS researcher, Harvard Mediczal School Dr. Jeffrey Koplan -- Director of the CDC Dr. Arthur Lawrence -- Epidemiologist, Advisor to the U.S. Surgeon-General, Secretary of Health and Assistant Secretary of HHS., developed with Dr. Philip R. Lee the 1997 satellite program for physician education. Formerly the Epidemiological Advisor to the President. Dr. Phil Lee -- was U.S. Assistant Secretary for Health 1993-96, promoted creaton of CFS Coordinating Committee, has publicly demanded a name-change for CFS. First term as Assistant Secretary for HHS 1964, developed Medicaid at the request of the late President John F. Kennedy. Dr. A.M. Lerner -- researches heart abnormalities in CFS Dr. Paul Levine -- retired NIC (National Institute for Cancer) scientist, pior to that was on the Biological Warfare medical team during the Johnson Administration until 1967. Active in AACFS. Still works out of Dr. Stephen Straus's office at NIH for CFS. Dr. Nicole Lurie -- Senior deputy to the Assistant Secretary of Health and Human Services Dr. Satcher (also Surgeon General), usually chairs the CFSCC meetings as Dr. Satcher holds two positions (only once has this happened and that was during the Carter Adminstration). Dr. Brian Mahy -- CDC administrator who diverted CFS research funds Dr. W. John Martin -- researcher who investigates the stealth virus Jill McLaughlin -- executive director of National CFIDS Foundation Dr. Kenny De Meirlier -- Belgian immunologist who sponsors the European ME/CFS medical conferences, researcher of Ampligen Dr. Garth Nicolson, Ph.D. -- researcher of link between Gulf War illness and mycoplasma, his findings are denied by the U.S. Dept. of Defense Florence Nightingale -- 19th century nurse who inspired the creation of the International Red Cross, bedridden most of her life, may have had CFS. Became sick after the Crimean War and nursing soldiers. Her birthday is May 12th, International ME/CFS Awareness Day. Dr. Dan Peterson -- long-time CFS clinician, investigated Nevada outbreak in 1984, also researches Ampligen Dr. Melvin Ramsey -- ME expert from the Royal Free Hospital in 1950, coined the name from Atypical Polio to Myalgic Encephalomyelitis (ME). Partner to Dr. Betty Dowsett and Dr. John Richardson. Dr. William Reeves -- CDC scientist in charge of CFS epidemiology studies, has opposed name-change, was the whistle-blower who exposed scandal of diversion of CFS research funds Dr. John Richardson -- Former World Health Organization physician from England. Expert in ME, Partners Dr. Betty Dowsett and Dr. Melvin Ramsey. Still sees 30 patient a week for free at the age of 84. (updated 8/99) Dr. Peter Rowe and Dr. Caulkin -- leaders of research team at Johns Hopkins Medical School which discovered link between CFS and neurally mediated hypotension Dr. David Satcher -- U.S. Surgeon-General Dr. Jay Seastrunk -- pioneer of neurontin treatment for CFS/FMS/MCS Donna Shalala -- U.S. Secretary for Health and Human Services Dr. Michael Sharpe -- British psychiatrist who favors psychological view of CFS Meghan Shannon, MS MFT -- Co-Founder of MPWC's, published in AACFS Medical Journal, name-change promoter, former Southwest Coordinator of RESCIND. Dr. Alexis Shelekov -- former NIH and Salk institute MD/researcher. Friend of Dr. Philip R. Lee. One of the "dissenters" in the 1988 naming of CFS. Believes in ME. Worked with Dr. Salk in Polio Vaccine, discovered many viruses. Very good friend has ME. Returned to Health and Human Services in 1993 for Dr. Lee, and ME/CFS. Now retired. Elaine Showalter -- literature professor who claims CFS is hysteria Dr. Les Simpson -- researcher of red blood cell abnormalities in CFS Nancy Solo -- founder and president of The Chronic Syndrome Support Assn., Inc. (CSSA) Joan Sutherland -- Founder of CACTUS, first patient lobbyist for CFS/ME Dr. Stephen Straus -- NIH scientist who favors psychiatric view of CFS Dr. Robert Suhadolnik, Ph.D. -- leads scientific team at Temple U. which is researching the RNase-L enzyme dysfunction biomarker Kristin Thorson, RN -- president and founder of Fibromyalgia Network, in 1999 resigned in frustration from the CFSCC Dr. Simon Wessely -- British psychiatrist who favors psychological view of CFS ------------------------------------------------------------- Medical terms BEAM -- A kind of brain scan CBC -- complete blood count CD4, CD8 etc. -- immune cells, T-Cells CEBV -- chronic Epstein-Barr syndrome. CFS was once thought to be this. EBV is one of the major causes of Mononucleosis also known as Glandular Fever in the United Kingdom. CBT -- cognitive behavior therapy CFS -- chronic fatigue syndrome CFIDS -- chronic fatigue and immune dysfunction syndrome, a name for CFS often used in the USA CMV -- Cytomegla virus, Herpes (DNA) Virus originally thought to be cause of AIDS CNS -- central nervous system CoQ10 -- co-enzyme Q10, a naturally occuring substance which some patients find helpful; available without prescription DD -- (slang) the "damned disease", i.e. CFS DHEA -- dehydroepiandrosterone, a steroid hormone that some patients find helpful although this medication has risks EBV -- Epstein-Barr Virus, Mono or Glandular Fever. DNA virus. One of many Herpes Viruses. EI -- See MCS EPD -- enzyme potentiated desensitization; a treatment FMS -- fibromyalgia syndrome; quite similar to CFS, many believe it is the same illness, although CFS researcher Dr. Paul Cheney says that FMS patients respond well to programs of graduated exercise, while CFS will suffer a relapse if they follow the same regimen. There's a separate network discussion group for this, FIBROM-L@MITVMA.MIT.EDU or newsgroup alt.med.fibromyalgia. FMS under rheumatoid Arthritis, found first in patients with Lupus. GWS or GWI -- Gulf War Syndrome or Gulf War Illness: condition noted by military veterans who fought in the 1991 Persian Gulf war. This hasn't been studied enough to clarify that it's one syndrome. Many of the patients, though, exhibit symtpoms indistinguishable from MCS, and MCS treatments have been very successful with these patients (as reported at NIH's workshop on this topic, April '94) HHV6 -- human herpes virus 6; might be involved in several conditions, including CFS. HMO -- health maintenance organization (USA); a pre-paid plan which provides comprehensive medical services HPA -- hypothalamic-pituitary-adrenal; this axis controls stress response and many other bodily functions; damage to this has been implicated as a possible cause of CFS. IVIG -- intravenous gamma globulin; a treatment that some find helpful MAOI -- monoamine oxidase inhibitors; a class of drugs that some find helpful; several risks MCS -- multiple chemical sensitivities, also known as EI (that is, environmental illness). Very similar to CFS except that in MCS, chemical and fume exposures are a clear trigger that worsen symptoms. Often discussed on the "immune" discussion group (to subscribe, contact immune-request@best.com M.E. -- myalgic encephalomyelitis; the name for CFS used most commonly outside of the USA. Though defined very differently MPS -- Myofascial Pain Syndrome; a syndrome of mechanical nature, which frequently co-exists with FMS and other biochemical syndromes, each perpetuating the other MRI -- magnetic resonance imaging; a kind of brain scan NK -- natural killer cell, a type of immune cell NMH -- neurally mediated hypotension, a blood pressure ailment linked to CFS by research in 1995 NSAID -- non-steroidal anti-inflammatory drugs; examples: naproxen, ibuprofen; used for pain PCR -- polymerase chain reaction; a DNA technique used for identifying viruses and other life forms PET -- a kind of brain scan PNI -- psychoneuroimmunology; new field that studies relations between emotions and the immune system PWC -- person with CFS PVFS -- post-viral fatigue syndrome; term used in Britain, associated with CFS/ME REDD -- RNase-L Enzyme Dysfunction Disease, refers to the Suhadolnik biomarker SoPWC -- spouse of PWC; significant other of a PWC SPECT -- a kind of brain scan SSDI -- disability benefit program from the SSA (USA) SSRI -- selective serotonin re-uptake inhibitors; examples: Zoloft, Paxil, Prozac; often used to address fatigue, cognitive dysfunction and depression T4, T8 etc. -- kinds of immune cells TCA -- tricyclic anti-depressants; examples: doxepin and amitriptyline; often used for sleep disorder, and muscle and joint pain; John Hopkins report on NMH showed that these anti-depressants were harmful to patients with low blood pressure as it causes this and makes patients much worse. TTT -- tilt table test; used to diagnose neurally mediated hypotension (NMH), a condition that has been linked to CFS ------------------------------------------------------------- Computer and other common abbreviations BBIAF -- be back in a few (an IRC term) BRB -- be right back (an IRC term) BTW -- by the way FAQ -- frequently asked question; or, a document that answers frequently asked questions FTP -- file transfer protocol; a nifty Internet utility for storing/retrieving files FWIW -- for whatever it's worth HTTP -- hypertext transfer protocol; the Internet utility which enables the World Wide Web to link multiple resources together IAIYH -- "It's all in your head" ICQ -- "I Seek You"; live conversations take place on this service. Available as a download from www.icq.com IMHO -- in my humble opinion IIRC -- if I recall correctly IRC -- Internet Relay Chat. Live conferences take place on this service. LOL -- lots of laughter or laugh out loud OIC -- Oh, I see! OTOH -- on the other hand ROTFL -- roll-on-the-floor laughing TTYL -- talk to you later URL -- universal resource locator; an Internet term that identifies specific locations for ftp, http, etc. resources YMMV -- your mileage may vary WRT. -- with respect to :-) -- a "smilie", meaning "meant in jest"; (look at it sideways to see the smilie face) ___________________ Revised 8/99