CFS-NEWS SECOND NEWS ARCHIVE

This is the Second News Archive for the CFS-NEWS page. See the following related links:

Archive of News Stories
from 1999 and earlier

Paper: Mycoplasmal Infections in Chronic Illnesses: Fibromyalgia and Chronic Fatigue Syndromes, Gulf War Illness, HIV-AIDS and Rheumatoid Arthritis, by Nicolson et al. -- 30 Oct 99
   Press release
   Full text of article

Research paper: Hyposecretion of adrenal androgens and the relation of serum adrenal steroids, serotonin and insulin-like growth factor-1 to clinical features in women with fibromyalgia. , by Dessein et al. -- 29 Oct

Research paper: Prevalence and Overlap of CFS and Fibromyalgia Syndrome Among 100 New Patients with Multiple Chemical Sensitivity Syndrome , by Albert Donnay -- 26 Oct

M.E. & CFS Medical Update for Winter '99 -- Laymens version -- 26 Oct

Renewed call for GAO petition on bias at U.S. gov't health agencies -- 25 Oct

CNN broadcasts respectful story about CFS -- Oct 25
   Transcript of CNN show, Oct. 24
   CNN news article

Research paper: Clinical and Pathogenetical Characterization of 238 Patients of a Chronic Fatigue Syndrome Italian Center , by D Racciatti et al. -- 23 Oct

Research paper: Borna disease virus infection in two family clusters of patients with chronic fatigue syndrome , by T Nakaya et al. -- 22 Oct

Research paper: The T102C Polymorphism of the 5-HT2A-Receptor Gene in Fibromyalgia. , by N Bondy et al. -- 22 Oct

CDC Director takes charge of CFS issues -- 21 Oct

CFS case definition to be revised by CDC -- 21 Oct

NIH Funds Three CFS Research Centers -- 20 Oct

CNN to report on CFS on Sunday, Oct. 24 -- 20 Oct

Research paper: Absence of Borrelia burgdorferi-specific immune complexes in CFS. , by Schutzer and Natelson -- 20 Oct

Survey Links Gulf War Syndrome to Nerve-Gas Antidote , by the New York Times -- 19 Oct

Research paper: Differing Patterns of Cognitive Dysfunction and Heart Rate Reactivity in Chemically-Intolerant Individuals With and Without Lifestyle Changes -- 18 Oct

Belgium government recognizes CFS -- 18 Oct

Research paper: Measuring Fatigue in Chronic Fatigue Syndrome: Why and How , by Gloria Furst -- 17 Oct

CDC asked to recognize Myalgic Encephalomyelitis , by the National CFIDS Foundation -- 14 Oct

Research paper: Orthostatic intolerance and CFS associated with Ehlers-Danlos syndrome , by Peter Rowe et al. -- 12 Oct

Media: CDC sorry for diverting funds , by the Associated Press -- 13 Oct

Several research papers on fibromyalgia in the journal "Arthritis Care and Research" -- 12 Oct

Research paper says 800,000 in USA have CFS -- 7 Oct
    Press release and summary from the CFIDS Assoc.
    Full text of paper , by Jason et. al

Research paper: U.S. Case Definition of Chronic Fatigue Syndrome: Diagnostic and Theoretical Issues , by Jason et al. -- 10 Oct

Congress directs CDC to restore full funding -- 7 Oct

New book: Functional Somatic Syndromes, edited by Peter Manu; review by Ellen Goudsmit PhD. -- 7 Oct

Dr. Stephen Straus at NIH appointed to head National Center for Complementary and Alternative Medicine (NCCAM) -- 5 Oct

Research: Evaluations of 4 health status measurements in reference to CFS/FMS patients -- 5 Oct

NIH grants offered for planning large clinical trials [may be applicable to fibromyalgia] -- 5 Oct

U.S. gov't CFS Committee seeks new members -- 5 Oct

CFS-NEWS #87 reports on:
* Brussels conference * what is M.E.? * small adrenal glands * functional somatic syndromes * CFS name and stigma * Gulf War illness update * CDC to meet activists * media reports * -- 5 Oct

Conference notes: presentations by Les Simpson, Garth Nicolson, David Bell, W. John Martin, Donald Scott -- 4 Oct

Research paper: Prevalence of chronic fatigue [syndrome] and chemical sensitivities in Gulf Registry Veterans , by Kipen et al. -- 4 Oct

Research paper: Investigation of the Different Phases of the CFS illness , by Jason et al. -- 4 Oct

Research paper: Fibromyalgia shows lower affinity for platelet Alpha-2-Adrenoceptors , by Maes et al. -- 30 Sep

Gulf War treatment reported by CNN -- 29 Sep

New publication: Chronic Relief News Digest -- 28 Sep

Research paper: Sleep and breathing anomalies in fibromyalgia patients , Sergi et al. -- 24 Sep

Call for Senate hearings on CFS research , CFIDS Association -- 24 Sep

U.K. Observer: Pesticides 'making half a million ill' -- 20 Sep

Paper: Latency Immunity and Therapy -- A Clinical Study of Latent Epstein Barr Virus Incidence in 297 Idiopathic Chronic Fatigue Patients with Plausible Hypotheses , by R. Bruce Duncan -- 19 Sep

Research paper: The growth hormone (GH)-releasing hormone-GH-insulin-like growth factor-1 axis in patients with fibromyalgia syndrome , by Leal-Cerro A, et al. -- 18 Sep

Research paper: Natural history of severe CFS , by Hill NF, et al. -- 18 Sep

JAMA reviews Wessely/Hotopf/Sharpe book on CFS -- 18 Sep

New members of U.S. CFS Coordinating Committee are named -- 14 Sep

Brussels conference: Ampligen report -- 13 Sep

Australian billboard disparages CFS, prompts outrage -- 13 Sep
[ Response by Hamilton Island.]

Research paper: Stigma and Chronic Fatigue Syndrome , by Green J, et al. -- 13 Sep

Brussels Conference:

The CFS World Congress was held on Sept. 9-12. The following are some highlights:

  • Many presentations were similar to those made at the Sydney conference in Feb. '99 (see the CFS-NEWS reports on that conference below)

  • Garth Nicolson made an impressive presentation on the involvement of mycoplasma in Gulf War syndrome and CFS

  • Nancy Klimas reported positive results regarding adoptive immunotherapy

  • Byron Hyde described positive results with Isoprinosine treatment

  • Renowned Australian lawyer Simon Molesworth called for the creation of a world organization for CFS

  • Regarding the change of name, leaders from Denmark and Norway noted that M.E. and CFS were not the same entity and they proposed that CFS be re-named to indicate that it is an atypical or incomplete form of M.E.

    • Research paper: Coping Differences Between Chronic Fatigue Syndrome Sufferers and Their Carers , by Susanne Ax, PhD --11 Sep

    Review paper: Functional Somatic Syndrome - One or Many , by Wessely S, et al. -- 10 Sep
    [See full text here.]

    Brussels conference: report that infections cause CFS -- 10 Sep

    Hillary Johnson, author of "Osler's Web", speaks out -- 9 Sep

    NIH funding compared for CFS, FMS and other diseases -- 8 Sep

    Research paper: Function of the hypothalamic adrenal axis in patients with Fibromyalgia syndrome undergoing mud-pack treatment , by Bellometti S, et al. -- 7 Sep

    Two papers on fibromyalgia/CFS in the Journal of Developmental and Behavioral Pediatrics, August 1999; 20:4 -- 6 Sep

    Brain Injury Causes Alzheimer's-Like Effects (Medical Tribune) -- 4 Sep
    [See related discussion on possible vaccine for Alzheimer's and CJD.]

    M.E. & CFS Update for Doctors, Sept. '99 -- 4 Sep

    NADH/Enada made available in Britain -- 2 Sep

    Mycoplasma and GWS/CFS discussed by Garth Nicolson in Medical Sentinel -- 31 Aug

    Research paper on fibromyalgia: The level of serotonin in the superficial masseter muscle in relation to local pain and allodynia , by Ernberg M, et al. -- 31 Aug

    Oral interferon treatment is subject of special edition of Journal of Interferon and Cytokine Research -- 31 Aug

    Gulf War Syndrome - "No link between ammo, gulf illness" -- 31 Aug

    Interview with David Berg: Hypercoagulability in CFS Patients -- 29 Aug

    Review paper: Human Herpesvirus 6 -- An Emerging Pathogen , by Campadelli-Fiume, et al. -- 28 Aug

    NIDRR interested in funding CFS Research (U.S.) -- 27 Aug
    [Correction noted here.]

    Paper: New Chronic Fatigue Study Fuels Debate on Name Change; DePaul Professor Says Biological Name Taken More Seriously -- 26 Aug

    Munchausen Syndrome by Proxy - a diagnosis that brings danger to CFS/ME children -- 24 Aug

    Research paper: Small adrenal glands in chronic fatigue syndrome: a preliminary computer tomography study. , by Scott LV, et al. -- 21 Aug

    Research paper: Vitamin B status in patients with chronic fatigue syndrome , by Heap, Peters, Wessely -- 21 Aug

    Research paper: Differing Patterns of Cognitive Dysfunction and Heart Rate Reactivity in Chemically-Intolerant Individuals With and Without Lifestyle Changes , by Iris R. Bell, et al. -- 20 Aug

    CFS-NEWS reports on Sydney ME/CFS conference of Feb. 99 -- 16-20 Aug

  • Introduction, reports by Peter Harrigan and Anelie Walsh, order form for proceedings
  • Report by Dr. Rosamund Vallings
  • Report by Jill Booth, BSc, in 3 parts: Part 1    Part 2    Part 3

    • Research paper: In vitro Study of Muscle Aerobic Metabolism in CFS , by W. Behan et al. -- 15 Aug

    M.E./CFS Medical Update for August '99 (laymen's version) -- 14 Aug

    CFS doctor Darryl See is under investigation -- 11 Aug
    [See background on Dr. See's work here.]

    Research paper: Patterns of orthostatic intolerance: The orthostatic tachycardia syndrome and adolescent chronic fatigue, by JM Stewart et al. -- 9 Aug

    Research paper: CDC study on the course of the illness: abstract -- 8 Aug

    Member of British CMO Working Group charges issues are ignored -- 8 Aug

    CDC whistleblower under attack, says Washington Post -- 6 Aug

    CFS research grant alerts available by e-mail -- 5 Aug

    Research paper: Differences in adrenal steroid profile in chronic fatigue syndrome, in depression and in health -- 30 Jul

    REPORTS ON CFSCC MEETING:

    CFIDS Association press release on CFSCC meeting -- 28 Jul

    Reuters: "CDC to restore chronic fatigue syndrome funding" -- 27 Jul

    Initial report on CFSCC meeting, by Roger Burns -- Jul 26

    Also see the special web page about the CDC scandal.

    CFSCC meeting of April 1999: Transcript -- Jul 27
    [Caution: this file is about 500 Kb. It is possible to obtain the file as a series of small e-mails by sending a message which says GET CFSCC 9904 SPLIT=20K by e-mail to address listserv@maelstrom.stjohns.edu. Note: This is not a transcript of the meeting that occured earlier this week, but rather the previous meeting in April. A summary news report on the April meeting can be seen below . ]

    Research paper: Cytokine Expression and Morphology of in vitro Grown Monocytes from Patients with CFS -- Jul 26

    CDC Scandal: Director of CDC makes statement -- Jul 23

    Research: Five papers on fibromyalgia published in Journal of Rheumatology -- Jul 23

    CDC scandal investigation by GAO (Washington Post story) -- Jul 21

    London conference of April 23-24: "Fatigue 2000" -- Abstracts online -- Jul 20

    CDC scandal: a second government investigation -- Jul 15

    AMPLIGEN: THREE NEWS RELEASES -- 13 Jul
    [For info on the experimental drug Ampligen, see http://www.cfs-news.org/ampligen.htm .]

    Manufacturer backs Community Advisory Boards for CFS and AIDS
    [For info on the CFS Community Advisory Board, see http://www.cfids-cab.org .]

    Wall Street short-seller Asensio criticizes those involved in promoting Ampligen CABs

    German investment firm praises Ampligen manufacturer for its new AIDS research

    CFS PATIENT HELPS TO WIN WORLD CUP
    SOCCER CHAMPIONSHIP -- 10 Jul

    Michelle Akers was described in news accounts as the winning team's "most outstanding player of the tournament", and as the "dominant force" in Saturday's victory. During the game Akers was felled by heat exhaustion and a head injury. See the following stories:

    Akers featured in ESPN story

    Story of World Cup victory -- Associated Press

    Details of Saturday's game -- Reuters

    PHOTOS OF AKERS DURING THE GAME

    How the players were chosen -- Reuters

    BBC reports on the game

    Yahoo News full coverage of the game

    MICHELLE AKERS' CFIDS PAGE

    Michelle Akers' home page

    Ampligen/activist meeting in Las Vegas is suspended -- 9 Jul

    MCS consensus definition is published -- 6 Jul

    CDC Scandal featured in Associated Press wire story -- 6 Jul

    CFS-NEWS #81: Spinal problem, somatisation, Sept. conference, Ampligen/activism -- 30 Jun

    Gulf War Syndrome: report on government meeting -- 26 Jun

    CDC Scandal: Government to hold special meeting on July 26 -- 24 Jun

    Media: World-class soccer player Michelle Akers battles CFS -- 24 Jun

    Psychiatric paper suggests that CFS and other conditions may be a variant of somatisation disorder
    [Click here for summary review by psychologist Ellen Goudsmit.] -- 22 Jun

    Isoprinosine Clinical Study Shows Promise for CFS -- 18 Jun

    GULF WAR RESEARCH:

    Gulf War Syndrome Cause May Be Found (Yahoo! News) -- 17 Jun

    Gene Trait Could Cause Gulf War Syndrome - Study (Reuters) -- 17 Jun

    Behavioral therapy may help Gulf War syndrome (Reuters) -- 14 Jun

    Disability attorney article, and live chat -- 17 Jun

    U.K. Chief Medical Officer's Working Group on CFS/ME -- 17 Jun

    CDC scandal to be studied by G.A.O. -- 15 Jun

    Paper: Overview of somatoform disorders (with CFS, FMS, and chronic pain included -- Reid, Wessely) -- 10 Jun

    Paper: Hydrotherapy for fibromyalgia (Ammer, Melnizky) -- 9 Jun

    CFS-MCS-FM Accepted by Canadian Parliament. Government to Support Sufferers and to Fund Research into the Illnesses -- 4 Jun
    [Note correction to this article here .]

    Research: Spine, skull surgery may help many with CFIDS: Chiari malformation or squeezing of spinal cord may be common in CFIDS, fibromyalgia, research by Drs. Michael Rosner, Thomas Milhorat, Robert Bennett, I. Jon Russell, Daniel Clauw -- 4 Jun

    Paper: Nefazodone for patients with chronic fatigue syndrome (Hickie) -- 3 Jun

    Researchers Find CNS Basis For Fibromyalgia -- 31 May

    AIDS, CFS communities link to get drug approved by FDA -- 31 May

    CDC Scandal: report in Washington Post -- 28 May

    BBC report: U.K. scientists challenged to investigate M.E. -- 26 May

    Gulf War illness subject of TV movie, "Thanks of a Grateful Nation" -- 26 May

    Letters in JAMA on low-dose hydrocortisone for CFS -- 26 May

    Interview: Dr. Les Simpson on red blood cell research in CFS -- 23 May

    Stealth viruses: five articles -- 23 May

    Lactic acid in CFS: Research from Adelaide -- 18 May

    Dr. Paul Cheney seminar on videotape -- 16 May

    Paper: Interferon-induced proteins are elevated in blood samples of patients with chemically or virally induced CFS (Vojdani, Lapp) -- 15 May

    CDC Scandal: Inspector-General's report -- 15 May
    [See also webbified version of the full report at http://www.mindspring.com/~patpm/igreport.htm ]

    Debate on ME in UK Parliament -- 13 May

    Pain: An Overview -- from Lancet -- 11 May

    MEDICAL CONFERENCE ON CFS: BRUSSELS, 9-11 SEP:

    Second World Congress on CFS and Related Disorders

    Call for Posters and Abstracts

    Preliminary Program

    Lancet letters: hydrocortisone and CFS -- 10 May

    Paper: Disordered sympathetic cardiovascular regulation in orthostatic intolerance (Jacob, Shannon, Costa et al) -- 3 May

    U.S. Social Security ruling approved -- 30 Apr

    QEEG Test Marker for CFS: Interview with Dr. Myra Preston and Kim Phillip -- 26 Apr

    U.S. Social Security decision comparing CFS to MS -- 18 Apr

    Australia: Mother fights to get CFS daughter back after disputing doctors -- 14 Apr

    Dr. W. John Martin interview: Stealth virus research -- 11 Apr

    Capita Selecta Quarterly (Medical Professionals' version) -- 11 Apr

    Paper: Abnormal Norepinephrine Clearance and Adrenergic Receptor Sensitivity in Idiopathic Orthostatic Intolerance (Jacob, Shannon, Costa et al) -- 10 Apr

    Paper: Orthostatic intolerance in CFS (Schondorf, Benoit et al) -- 10 Apr

    THIS STORY POSTED: Saturday, November 20, 1999, 10:05 UTC

    U.S. GOV'T MEETING: NAME-CHANGE TAKES GIANT LEAP FORWARD, SOCIAL SECURITY RECOGNIZES CFS, SCANDAL REPORT IS DELAYED
    by Roger Burns
    REVISED: Saturday, April 24, 1999, 15:05 UTC

    In a whirlwind of events, the following took place during the U.S. government's CFS Coordinating Committee meeting of April 21-22:

    • A new name for CFS will be recommended for promotion by the U.S. Surgeon-General by Sept. 20, 2000. This recommendation will be developed by a Name Change Working Group created by the U.S. government committee.

    • A parallel name-change process which had been quietly underway in recent months was also described by a group of national-level organizations working with the scientific community.

    • CFS was given official recognition by the U.S. Social Security Administration (SSA), according to an announcement made by an SSA official at the government meeting.

    • The investigative report on the CDC misappropriations scandal was delayed and was not available to be reviewed by the government CFS Coordinating Committee. Committee members expressed displeasure at this delay.

    • A new physician-education program is being developed to help the average doctor understand what CFS is.

    • "Act-up" activists from the AIDS movement testified and demanded fast-track approval for the drug Ampligen, which may benefit both AIDS and CFS patients.

    Name Change

    Earlier in the week, the name-change issue was featured prominently in testimony given before Congress given by the CFIDS Association of America's executive director, Ms. Kim Kenney. At the meeting of the CFS Coordinating Committee, the CFIDS Association presented recommendations for criteria for choosing a new name. The recommendations were based on consultations with 156 physicians, researchers, CFS patients and advocates. The Association then proposed the formation of a Name Change Working Group that would choose and recommend a new name to the U.S. Department of Health and Human Services (HHS), the mega-agency which includes the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC). This proposal was unanimously adopted by the government's CFS Coordinating Committee.

    The Name Change Working Group will be comprised of 13 members: a chairman chosen by HHS; three patient advocates; three physicians who are familiar with CFS; three scientists who are familiar with CFS; and three members of the government CFS Coordinating Committee. The patients, physicians and scientists will be chosen by the chairman and the three Coordinating Committee members selected by HHS. The proposed timeline for the committee's work -- which was deemed "optimistic" by the Coordinating Committee's chairman -- is for the Name Change Working Group to be formed by August 31, to first meet by November 1, and shall make its recommendation by September 20, 2000.

    In a separate announcement made later at that same meeting of the Coordinating Committee, Roger Burns, who publishes CFS-NEWS and who has been a prominent leader in the name-change movement, described a somewhat similar process that had been underway in recent months involving national-level CFS/M.E. organizations within the U.S.A. and from Europe, Australia and Canada who were working with well-known scientists to explore possible new names. Mr. Burns said that in his personal view it will be important for this project to defer to and contribute to the much more influential process involving the Dept. of HHS that was decided upon earlier that day. Burns gave "grand congratulations" to the Coordinating Committee for taking a very major step on this issue.

    Social Security

    It was announced that the Commissioner of Social Security had issued a ruling to recognize CFS as one of the illnesses that may qualify for disability benefits. However, applicants must provide documentation to show that they are disabled just as they must do for other illnesses. An education program will be given to Social Security adjudicators this summer to sensitize them to CFS issues.

    Also, Kim Kenney of the CFIDS Association made a comment relating to the recent Wall Street Journal editorial, which quoted an anonymous Social Security offical in support of the Journal's disparaging view of CFS patients. Ms Kenney said that now that the new ruling was in place, she would be talking with Social Security officials to see whether that agency would consider issuing a corrective statement to counterbalance the comments that appeared the Journal.

    Physician Education

    The CFS Coordinating Committee held a special workshop on developing a program for physician education regarding CFS. Several experts participated in a broad discussion on how to inform clinicians in the field and medical students in training. A committee has been formed to develop educational materials and to develop a plan for reaching doctors.

    CDC Scandal

    No report was ready yet from the HHS Inspector-General regarding the charges that the CDC had misdirected funds away from CFS research. It was announced that among the many actions that the Inspector-General might take, it had been decided that no criminal charges would be referred to the Dept. of Justice, however such an extreme action had not been expected by those following this issue.

    The Coordinating Committee expressed a strong interest in holding a special meeting as soon as the investigation was concluded so that they might take their own actions about the matter, however an HHS administrator explained that there would not be enough resources to hold such a special meeting in addition to the regular meeting scheduled for next October. Plans for the October meeting include a possible workshop on general CFS research.

    THIS STORY FIRST POSTED: Friday, April 23, 1999, 12:10 UTC

    MERCK MANUAL NOW LISTS CFS
    by Roger Burns

    The Merck Manual of Diagnosis and Therapy, "the most widely used general medical textbook in the world", now lists CFS among its hundreds of recognized diseases and conditions. The Centennial Edition of the manual with the new CFS listing was released on April 22. (See the press release here).

    [Thanks to Marc Fluks for alerting us to this story.]

    THIS STORY POSTED: Friday, April 23, 1999, 11:05 UTC

    SINGER "CHER" DISCUSSES HER CFS ILLNESS
    by Roger Burns

    Pop singer and actress Cher has publicly discussed her CFS illness in recent media interviews. The Oscar-award-winning actress and former member of the "Sonny and Cher" singing group has, in recent interviews, more openly admitted her former illness, which she now says she has recovered from. Cher will be on tour this summer to promote her new music album.

    THIS STORY POSTED: Friday, April 23, 1999, 10:55 UTC

    CFS-NEWS REPORTS ON NADH TREATMENTS, VACCINE LINKED TO GULF WAR, GENETIC FACTOR IN CFS/FMS, AND GOV'T MEETINGS
    by Roger Burns

    The March 31st edition of the CFS-NEWS Electronic Newsletter contains the following items:

    1. NADH treatment shows positive results
    2. Vaccine implicated in Gulf War illness
    3. Genetic factor may cause muscle metabolic abnormalities in CFS and FMS
    4. Report on Last year's Sydney Conference now available
    5. Dr. Paul Cheney is interviewed
    6. EDITORIALS: Britons and Americans address CFS; Media wars

    See the full text of the March 31st edition (click here).

    THIS STORY POSTED: Thursday, April 1, 1999, 10:20 UTC

    NEW YORK TIMES TOUTS CBT THERAPY FOR CFS
    by Roger Burns

    Many medical conditions such as CFS, Gulf War illness, etc. are stress-related and respond positively to cognitive behavioral therapy, according to New York Times' health columnist Jane Brody. The article cited experts such as British psychiatrist Simon Wessely, Navy epidemiologist Kenneth Hyams, and Princeton literature professor Elaine Showalter. The full text of this article can be seen at the CO-CURE archive.

    THIS STORY POSTED: Tuesday, March 16, 1999, 23:00 UTC

    LAST YEAR'S SYDNEY CONFERENCE REPORT IS NOW AVAILABLE
    by Roger Burns

    The conference report for last year's Sydney medical conference is now available for purchase. Presenters included Peter Rowe, A. Martin Lerner, Andrew Lloyd, Timothy Roberts, Kenny de Meirleir, David Bell, Gary Scroop, and others. Presentations included the topics of heart and blood problems, urinary metabolites, mycoplasmas and Gulf War illness, staphyloccocal toxoid vaccine, abnormal RNaseL and Ampligen, the Stealth virus, and many other topics.

    The 1998 conference papers were edited by Timothy Roberts, PhD. of the University of Newcastle. They are 300 pages long. The price of the report is $40 for Australians, and $60 (Australian currency, shipping included) for overseas orders. Overseas purchasers are asked to convert their payments into Australian currency. Some conversion figures for AUS$60 as of today, March 16 are as follows: American $38, British 23.40 pounds, Euro 34.70, Canada $58. A currency conversion calculator can be seen at http://www.oanda.com/converter/classic.

    Please send a bank cheque, or send Bankcard or Mastercard information to:

    Alison Hunter Memorial Foundation
    43 McIntosh St
    Gordon, NSW 2072
    Australia

    A list of presenters and a link to the abstracts can be seen online at http://www.networx.com.au/mall/cfs/meeting/ . A news report on this conference appeared in CFS-NEWS #70.

    [Thanks to Dr. Tim Roberts and Christine Hunter for assistance with this story.]

    THIS STORY POSTED: Tuesday, March 16, 1999, 03:30 UTC

    REPORTS ON 1999 SYDNEY MEDICAL CONFERENCE
    by Roger Burns

    Reports about February's Sydney medical conference are now available online. The conference abstracts can be seen at http://www.networx.com.au/mall/cfs/Abstra99.htm. Anelie Walsh posted a report about the summaries given on the Patients Day by the presenters regarding the previous day's doctors-only medical conference, see her report here. See also the List of Speakers and the speech by patient advocate Ted Shaw.

    THIS STORY POSTED: Sunday, March 14, 1999, 15:40 UTC

    FIBROMYALGIA SPECIAL EDITION FOR GERMAN MEDICAL JOURNAL
    by Ray Colliton

    The German rheumatology journal "Zeitschrift für Rheumatologie" has released a special supplement comprised of articles concerning fibromyalgia: 1998, Volume 57, Supplement 2. A list of the articles along with some synopses of content is available at:

    http://www.co-cure.org/infores.htm#Zeitschrift

    Margaret Bailey compiled the listing of the articles and did the synopses for the Co-Cure list. The journal has its own web page with links to the article texts themselves at:

    http://www.link.springer.de/link/service/
    journals/00393/tocs/t8057008.htm

    THIS STORY POSTED: Sunday, February 28, 1999, 05:50 UTC

    $67 MILLION OFFERED FOR GULF WAR ILLNESSES RESEARCH, INCLUDING $3 MILLION FOR STUDY OF FMS, CFS & MCS TOGETHER
    by Albert Donnay
    Executive Director of MCS Referral and Resources
    Baltimore, USA

    The following is modified from a notice distributed by Albert Donnay

    Some of you have asked me for more information about the 5 solicitations issued on Feb 12 by the Dept of Defense (DoD) for $67 million over 4 years to study Gulf War veterans' illnesses, including the first federal funding ever -- $3 million -- for the study of CFS, FMS and MCS together (ie. their overlap among Gulf War veterans). This single solicitation is equivalent to the entire annual federal research budget for FMS, 1/4 the CFS research budget , and maybe 1/6 the MCS research budget (over $20 million per year among 9 agencies).

    The $3 million for CFS, FMS and MCS was not the DoD's idea, of course, but the result of a Congressional appropriation introduced in 1998 by Senator Tom Harkin. There is no cap per investigator on this, so you can bid for the whole $3M but you will have much better odds if you also submit proposals for $200,000 - $400,000 as DoD might decide to split up the money if the reviewers recommend this (and especially if the upcoming CDC Gulf War Research Planning Conference recommends this... I think DOD could learn a lot more from 10-15 small studies than one huge 3 million dollar study, but big studies look more impressive )

    Unfortunately, the deadline for the CFS, FMS, MCS solicitation is very soon, March 24--just six weeks after the notice came out and a month before any of the others issued the same day are due. The deadline may be extended into April if enough researchers ask (Director Craig Lego, Contracting Officer, c/o dolores.king@amedd.army.mil).

    The other 4 of 5 solicitations are each offering $16M over 4 years, with a requested max avg of $200,000 per year but a max total allowed of $1 million (pentagon math, no wonder they have so many cost overruns!). The deadlines for applying for these range from mid April to mid May. The solicitations address :

    1. Force Health Protection
    2. Stress & Somatic Consequences
    3. Assessing Mixed Chemical Exposures
    4. Interactions of Drugs, Biologics and Chemicals in Deployment Environments

    For more information, see the following links:

    Gulf War Illnesses Research:

    Integrated Psychosocial & Neuroscience Research on Stress & Somatic Consequences
    http://www-usamraa.army.mil/gwstress.htm

    Multidisciplinary Studies of Fibromyalgia, Chronic Fatigue Syndrome and Chemical Sensitivities
    http://www-usamraa.army.mil/gwfatigue.htm

    Force Health Protection - Deployment Health
    http://www-usamraa.army.mil/gwforce.htm

    Innovative Biologically-based Toxicology Methods & Models for Assessing Mixed Chemical Exposures with Potential Neuro-Toxicological & Other Health Effects
    http://www-usamraa.army.mil/gwtoxicology.htm

    Interations of Drugs Biologics and Chemicals in Service Members in Deployment Environments http://www-usamraa.army.mil/gwenvironments.htm

    Also note that the email address for the contact person in all these solicitations is incorrect. It should be Delores King at dolores.king@amedd.army.mil (but she just process requests and paperwork and can't answer detailed questions). The man who wrote the solicitations is not mentioned in them and does not normally answer email or take calls etc. The solicitations are supposed to speak for themselves.

    Good luck!

    -- Albert Donnay, MHS
    Exec. Director, MCS Referral & Resources, Inc. 410-362-6400,
    NOTE NEW EMAIL ADDRESS: adonnay@mcsrr.org, www.mcsrr.org

    ps. A paper I wrote with Dr. Ziem (J. CFS (5):2. 1999, in press) on the prevalence of CFS & FMS among 100 new patients with MCS found that 88 had CFS on initial visit, 49 had FMS and 47 had all three. Only 10 had pure MCS with neither of the others, but the rarest overlap was MCS and FMS (without any CFS): just 2 (both women) out of 100. There were significant gender differences and these were due entirely to FMS (not CFS), with women twice as likely to have all three disorders compared to just MCS/CFS while men were just the opposite (twice as likely to have only MCS/CFS compared to all 3).

    Clearly such extensive overlaps need to be assessed and controlled for not just in any study of all three disorders but also in any study of any one, since each one of CFS, FMS and MCS exists in at least 4 distinct subtypes: pure cases (no overlaps), either of two possible 2-way overlaps, and the three-way overlap (most common in our clinic population but not likely in the general population).

    Many published and several replicated MCS questionnaires are now available to facilitate screening and evaluation. MCS Referral & Resources prepared a manual of these for the other WorkGroup members at the upcoming CDC meeting and I would be glad to provide any researchers who are interested with the summary table which describes these instruments and how to get in touch with their authors.

    Please just email me your snail mailing address.if interested. The manual also includes a table of related and/or overlapping disorders to consider in the differential diagnosis of MCS and a referenced table of abnormal signs and tests associated with MCS.

    THIS STORY POSTED: Saturday, February 27, 1999, 17:10 UTC

    MUSICIAN KEITH JARRETT DISCUSSES HIS ILLNESS
    by Roger Burns

    World-famous jazz pianist Keith Jarrett discusses his struggles with CFS in recent interviews. See the following links for the full text of the articles:

    A Ferocious Spirit, Untamed -- Los Angeles Times, Feb. 23, 1999

    Still Battling an Illness, Jarrett Ends His Silence -- New York Times, Nov. 8, 1998

    Not the Keith Jarrett of Old, but Almost: Ailing pianist plays only second concert in two years. -- Los Angeles Times, Feb. 27, 1999

    THIS STORY POSTED: Saturday, February 27, 1999, 16:25 UTC

    GLANDULAR FEVER (INFECTIOUS MONONUCLEOSIS) IS A RISK FACTOR FOR CFS
    by Linda Clement

    Researchers at St. Bartholomew's in London followed a group of 250 primary care patients who were diagnosed with either glandular fever (called infectious mononucleosis in the U.S.) or ordinary upper respiratory tract infections. When the patients first came down with their illnesses, 47 percent of the glandular fever patients and 20 percent of the respiratory infection patients developed acute fatigue symptoms. In the glandular fever patients, the fatigue symptoms usually lasted about eight weeks; in the respiratory infection patients, the fatigue symptoms lasted about three weeks.

    However, the researchers continued to follow up the patients for six months after initial diagnosis. They found that, according to the most conservative statistical measures, nine percent of the glandular fever patients developed chronic fatigue syndrome. None of the respiratory infection patients developed CFS. They also found that some of the patients developed a short-term major depressive disorder, but this lasted only about three weeks for most of them; at six months after onset the prevalence of psychiatric disorder was no greater than before onset. The authors concluded that glandular fever is a significant risk factor, not only for acute short-term fatigue symptoms but also for chronic fatigue syndrome, and that depressive disorders that last more than a few weeks from onset are not related to the infection.

    This paper was published as:

    White PD, Thomas JM, Amess J, Crawford DH, Grover SA, Kangro HO, Clare AW. Incidence, risk and prognosis of acute and chronic fatigue syndromes and psychiatric disorders after glandular fever. Br J Psychiatry 1998 Dec;173:475-81. PMID: 9926075, UI: 99124898.

    The full text of the paper can be read online at the ME-NET Archive.

    [Thanks to Marc Fluks for assistance.]

    THIS STORY POSTED: Tuesday, February 23, 1999, 03:55 UTC

    RESEARCH ARTICLES OF INTEREST
    by Linda Clement

    The following research papers may be of interest:

    Met-enkephalin increase in patients with fibromyalgia under local treatment. de Lourdes Figuerola M, Loe W, Sormani M, Barontini M. Funct Neurol 1998 Oct-Dec;13(4):291-5. PMID: 9934573, UI: 99133336.

    A randomized, double-blind, placebo-controlled study of moclobemide and amitryptiline in the treatment of fibromyalgia in females without psychiatric disorder. Hannonen P, Malminiemi K, Yli-Kerttula U, Isomeri R, Roponen P. Br J Rheumatol 1998 Dec;37(12):1279-86. PMID: 9973149, UI: 99137434.

    Cytokine dysregulation in the post-Q-fever fatigue syndrome. Penttila IA, Harris RJ, Storm P, Haynes D, Worswick DA, Marmion BP. QJM 1998 Aug;91(8):549-60. PMID: 9893758, UI: 99109756.

    THIS STORY POSTED: Tuesday, February 23, 1999, 03:45 UTC

    CFS-NEWS REPORTS ON FIBROMYALGIA MARKER, LOW-DOSE HYDROCORTISONE, AND GULF WAR STUDY
    by Roger Burns

    The February 19st edition of the CFS-NEWS Electronic Newsletter reports on new research on fibromyalgia, including a possible biological marker for the illness. There are also a reports on low-dose hydrocortisone as applied to CFS, and the recent British study on Gulf War illness.

    1. Antibody test may be a biomarker for fibromyalgia, also indicates severity of illness
    2. Possible fibromyalgia gene identified
    3. Low-dose hydrocortisone helps CFS, says London study
    4. CFS differs from fibromyalgia by levels of substance P
    5. Hormone Interleukin-6 increases during "real-life" CFS
    6. Gulf War vets show increased illness but no distinct syndrome is found, says U.K. study
    7. DHEA-S deficiency found in CFS patients
    8. CFS-NEWS welcomes Linda Clement as Associate Editor
    9. Internet patients' group for information and support

    See the full text of the February 19st edition.

    THIS STORY POSTED: Friday, February 19, 1999, 21:30 UTC

    BOSTON GLOBE TRIVIALIZES FIBROMYALGIA IN SUICIDE STORY

    In a front page article in the Boston Globe about the recent suicide of a fibromyalgia patient, fibromyalgia syndrome is described as being "on the psychiatric spectrum", and the article elsewhere implies that CFS is "no organic illness".

    The article in the Monday, March 16 edition of the Boston Globe gave further details about the death of Bill Connaughton, 42, of West Roxbury, Massachusetts, whose suicide on March 5 was assisted by Dr. Jack Kevorkian, the well-known promoter of the right to physician-assisted suicide. Connaughton was an active in developing the online community of fibromyalgia patients on the America Online network, where he was known as "Boston Bill".

    The full text of the Globe article can be seen at

    http://www.boston.com/dailyglobe/globehtml/075/
    A_champion_of_the_afflicted_is_mour.htm

    Steve Thorson of the Fibromyalgia Network made the following comments about the death:

    It is sad news, it's disappointing that any patient should reach a point where they take their own life. It happens too often. A lot has to do with what their support system is and whether they've got family and friends support, and physician and healthcare support. But there is always very hopeful research going on in fibromyalgia syndrome as well as chronic fatigue syndrome....

    I am very much encouraged by the research that's going on in novel, new pain medications that are going to be a real boon to patients in the near future. Some that are coming out are completely independent of fibromyalgia syndrome / CFS....

    There are organizations like ours, AFSA, and the CAA, that are doing grassroots types of research, and that there's continued pressure on the NIH to support more. I think things will eventually break through here. It's hard not to be discouraged when you're facing it day to day. In the long run there are lots of avenues to look forward to....

    The Fibromyalgia Network is into patient education. AFSA'a full-time goal is to raise funds for research. We want to encourage researchers ... We've actively solictied members of the American Pain Society to get involved in research on FMS this year, and we'll be doing that over the next couple of years, to widen the circle of researchers that are looking at this condition. These people understand pain systems, and they're coming up with knowledge on pain systems that the medical community has never understood before. That's exciting stuff, and it's very much going to translate into good pain treatments for people with chronic, intractable pain.

    Thorson went on to say that opioids and other pain-killers are often under-prescribed due to an unfounded concern that they easily lead to addiction in pain cases.

    The Fibromyalgia Network offers a pamphlet named "Getting the Most Out of Your Meds" . Here are some helpful links about fibromyalgia and pain management:

    Fibromyalgia, general info -- http://www.cfs-news.org/fibro.htm
    Pain management web page -- http://www.cfs-news.org/pain.htm
    Fibromyalgia Network -- http://www.fmnetnews.com
    American Pain Society -- http://www.ampainsoc.org
    Oregon Fibromyalgia Foundation -- http://www.myalgia.com/Bindex.htm
    The following news media articles reported on this case:

    [Thanks to Lara Rooney, Harry Train and Jane Smith for assistance this story.]

    THIS STORY ORIGINALLY POSTED: Friday, March 6, 1998, 20:45 UTC
    REVISED: Tuesday, March 17, 1998, 19:00 UTC

    CFIDS ASSOCIATION OF AMERICA IS IN TROUBLE. The CFIDS Association of America is in a critical financial crisis, according to a public letter from Marc Iverson, the founder and president of the Association. The Association undertook a fundraising strategy in 1997 which failed to raise enough funds that could be used in an unrestricted manner for salaries and office expenses. Funds that were raised early in the year were committed solely to research, while a later fundraiser for unrestricted monies was not successful, according to the public letter. The letter went on to say that the Association now faces imminent bankruptcy as of February, and it pleads for further donations.

    The full text of Mr. Iverson's public letter can be seen here. The Association's web page can be viewed at http://www.cfids.org .

    Donations can be sent to:

    CFIDS Association of America
    P.O. Box 220398
    Charlotte, NC 28222-0398
    USA

    THIS STORY POSTED: Saturday, February 7, 1998, 20:50 UTC

    GULF WAR ILLNESS IS LIKELY PSYCHOLOGICAL STRESS, SUGGESTS TV NEWS PROGRAM.
    Gulf War Illness is likely psychological stress, according to a television documentary broadcast by the USA's Public Broadcasting Service (PBS) on January 20. The documentary interviewed many experts but emphasized those who believe in the psychological stress viewpoint.

    A transcript of the documentary can be seen at http://www.pbs. org/wgbh/pages/frontline/shows/syndrome/etc/script.html. The PBS web page on Gulf War Illness issues is at http://www.pbs. org/wgbh/pages/frontline/shows/syndrome/. A general information web page on Gulf War Illness is at http://www.cfs-news.org/gulfwar.htm.

    [Thanks to David Peterson for alerting us to this story.]

    THIS STORY POSTED: Tuesday, February 3, 1998, 13:25 UTC

    AMERICAN PSYCHOLOGICAL ASSOC. DEBATES CFS. See report by Los Angeles Times, Monday, Aug. 18, also APA schedule notes.

    ARTICLE LINKS SECRET VACCINE EXPERIMENTS TO GULF VETS Aug. 7, Washington Times

    AMPLIGEN ARTICLE IN CFIDS CHRONICLE. An article in the Summer '97 CFIDS Chronicle describes the latest news about the drug Ampligen, a possible treatment for CFS. The article describes current research trials and the costs to patients involved in those trials and how to participate. It reviews past experiences from previous trials of the drug and discusses some aspects of how it might be made available to patents in the future. The article is available online at http://www.cfids.org/chronicle/97summer/ampligen.html.

    See also the Ampligen Information page.

    ASSISTED SUICIDE OF CFS PATIENT. Janis Murphy, 40, of Henderson, Nevada was found dead on Thursday, June 25 with a note requesting that contact be made with the attorney of Dr. Jack Kevorkian, the well known American promoter of the right to physician-assisted suicide. Murphy suffered from fibromyalgia and chronic fatigue syndrome. See the following news stories:

    * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

    BRITISH SCIENTISTS FIND CLUE TO GULF WAR SYNDROME. Researchers at the University College London Medical School report that the combined effect of vaccinations, stress and pesticides may have produced Gulf War syndrome. The report was published as:

    Graham Rook and Alimuddin Zumla. Gulf War syndrome: is it due to a systemic shift in cytokine balance towards a Th2 profile? Lancet 1997; 349:1831-33.
    See also an article about this report in the London Sunday Times of 22 June 1997.

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    GOVERNMENT SCIENCE PANEL ON GULF ILLNESS DISCUSSES TREATMENT RESEARCH: The U.S. Dept. of Veteran Affairs' Persian Gulf Expert Scientific Committee met on June 16-17 in Washington and discussed several topics including: the possible role of mycoplasmas in Gulf War illness; a plan to review Dr. Garth Nicolson's research on mycoplasmas; and the value of cognitive behavioral therapy.

    Other upcoming events: House Veterans Affairs Subcommittee on Health holds a hearing on June 19; Congressman Shays' committee continues its investigatory hearings on June 26. See the Gulf War Illness web page for more general information.

    * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

    U.S. GOVERNMENT STUDY LINKS CHEMICALS TO GULF VETS. The U.S. General Accounting Office is soon to publish a report criticizing prior government studies which have overlooked important evidence linking chemical exposures to Gulf War illness, according to a report published Sunday, June 15 in the New York Times. In response, the previous government research efforts were defended in detail by the chairwoman of the Presidential Advisory Committee and ny a spokesman for the Dept. of Defense. A counter response has been published on the Internet by James Tuite of the Gulf War Research Foundation. See the following references for further details:

    See the Gulf War Illness web page for more general information.

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    AUSTRALIAN SCIENTISTS COMMENT ON EXERCISE AND OTHER TREATMENTS: An article in the Sydney Morning Herald (Saturday, 7 June 1997) quotes Australian scientists who comment on the recent British report on exercise therapy, and on other CFS treatments. Dr. Rob Loblay of the University of Sydney stated that exercise was now more often advised for CFS patients than in the past, however it was still important that patients not overdo it. Mrs. Pat Coughlan of the ME/CFS Society of New South Wales "emphasised that exercise could make some patients feel worse. Doctors must determine whether a patient was capable of any exercise before recommending it", according to the article.

    Dr. Andrew Lloyd of the University of New South Wales commented more generally on CFS treatments and how they would likely be described in the upcoming clinical practice guidelines being prepared by the Royal Australian College of Physicians (RACP). That group is expected to recommend against immunoglobulin injections and blanket use of anti-depressants, and in favor of a supportive approach focusing on carefully supervised exercise and help for sleeping and mood problems. "We will be saying that there is no magic bullet, a single-hit treatment that will cure" according to Lloyd. Both Lloyd and Loblay are participating in the RACP committee that is developing the CFS clinical practise guidelines for Australia.

    For further information, see the text of the Herald article and the article below about the R.A.C.P. committee on CFS clinical guidelines.

    * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

    COLBY STUDY ON M.E. IN BRITISH CHILDREN DISCUSSED IN THE PRESS AND IN THE BRITISH MEDICAL JOURNAL: Two opinion pieces in the British Medical Journal (BMJ) give differing views on the Colby study of M.E./CFS in British schoolchildren. In an essay titled "Plague or Pure Hype?", Fiona Godlee takes authors Jane Colby and Elizabeth Dowsett to task for their just-published study in the Journal of Chronic Fatigue Syndrome which, Godlee claims, draws inaccurate and overly broad conclusions which have been overly publicized in the popular press. The BMJ staff also makes its own editorial comment in support of this view, and refers to the study by Fulcher and White which "shows that graded exercise was more effective than relaxation" (see the news item further below). In another essay in that same edition of BMJ (no. 7095, vol. 314, Saturday 7 June 1997), pediatrician Harvey Marcovitch agrees with much of Godlee's criticism, but says that Colby and the Royal Colleges Report are both right in calling for a more serious look at the important problem of M.E./CFS in schoolchildren. For more details, see the following resources:

    * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

    EXERCISE HELPS CFS PATIENTS, SAYS LONDON STUDY: A study published in the British Medical Journal (BMJ) says that a program of gradually increased aerobic exercise helps many CFS patients who have no prior history of psychiatric or major sleep disturbances. See the Reuters newswire article which describes this study, and also the BMJ's press release and the abstract for this article. This paper is published as: "Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome". Kathy Y Fulcher, Peter D White British Medical Journal 1997;314:1647-1652. There is also a news article about the study which appeared in the Sydney Morning Herald.

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    AUTONOMOUS NERVOUS SYSTEM DYSFUNCTION INDICATED BY HARVARD STUDY: A study by Roy Freeman and Anthony Komaroff of Harvard Medical School has found anomalies in the autonomous nervous sytem of CFS patients similar to those found by Johns Hopkins researchers in 1995. The current study has been published in the American Journal of Medicine. For further information, see the PRNewswire article about this paper.

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    LATEST JOURNAL OF C.F.S. FOCUSES ON CHILDREN: The Spring edition of the medical Journal of Chronic Fatigue Syndrome focuses on pediatric CFS issues. Articles include: a research review by Karen Jordan, Amy Kolak and Leonard Jason; a prevalence study of adolescents by the U.S. Centers for Disease Control; a paper on long-term absences in British schools due to ME/CFS, by Elizabeth Dowsett and Jane Colby; a paper on pediatric illness onset characteristics, by David Bell; brief articles by James Jones and Charles Lapp; and a review of an article from the Journal of Psychosomatic Research. For information on getting a paid subscription to the Journal of CFS, follow this link.

    * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

    WASHINGTON RALLY, MAY 12: Fifty-eight CFS patients participated in an Awareness Day rally here. Major speakers included Tom Hennessy (founder of May 12 Day), Albert Donnay of the MCS Referral and Resources group, and Vicki Carpman of the CFIDS Association of America. Many PWCs will visit their elected officials in a formal lobbying effort later in the week lead by the Association. See the detailed report on this event.

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    AUSTRALIAN COMMITTEE. A committee of scientists is developing a set of clinical guidelines for the treatment of CFS to be used by doctors in Australia. The committee's initial draft report is expected sometime in August.

    Also note these other important CFS information resources:

    [CFS / M.E. Information page]    [CFS Frequently Asked Questions]    [CFS Quick Index]

    This page is maintained by Roger Burns of Washington, D.C.
    E-mail: cfs-news-request@maelstrom.stjohns.edu