HHHHHH HHHHHH HHHHHH H H HHHHHH H H HHHHHH H H H HH H H H H H H HHHHH HHHHHH HHHH H H H HHHH H H H HHHHHH H H H H HHH H H H H H HHHHHH H HHHHHH H HH HHHHHH HHHHH HHHHHH Chronic Fatigue Syndrome Electronic Newsletter -------------------------------------------------------------------- No. 26 November 16, 1993 Washington DC -------------------------------------------------------------------- MEDICAL PUBLICATIONS UPDATE CONTENTS >>>1. Medical Publications Update >>>2. USA Interagency meeting on CFS / NIH Workshop >>>3. International Conference on Chronic Fatigue May 18-20 1994 >>>4. Flu shot advice from Cheney Clinic >>>5. Canada disability benefit information ------------------------------------------------------------------- >>>1. Medical Publications Update [PLEASE NOTE that CFS-NEWS regularly publishes medical update summaries from both from the Univ. of California / Irvine Biomedical Library (as in this edition), and from the quarterly medical update of the International Federation of Myalgic Encephalomyelitis Associations (IFMEA). These are completely separate compilations and in many instances the same citations will appear in both. The following was contributed by Mr. Steve Clancy, the sysop of the Wellspring BBS which is a service of the Biomedical Library of the University of California at Irvine.] This CFS UPDATE is a review of the current medical literature on Chronic Fatigue Syndrome and is presented as a public service by the Wellspring RBBS. The presence or absence of any information in this review should not be taken as advocating one method of treatment over another, and should not be construed as providing medical advice or diagnosis. The references may be taken from various sources and should be used for educational purposes only. Databases accessed may include the MEDLINE online database produced by the National Library of Medicine, as well as other online and print sources. This listing is NOT a complete review, but represents a selection. Further information may be obtained from the U.C. Irvine, Biomedical Library, or from your local medical library. STEVE CLANCY, M.L.S., WELLSPRING RBBS (714) 856-7996 (714) 846-5087 (714) 725-2700 VOICE (714) 856-7309 ******************************************************************** (NOTE: Articles with title in brackets [ ] are not in English.) 1. Suhadolnik RJ; Reichenbach NL; Hitzges PM; Ablashi DV; Strayer DR; Carter WA. RNA drug therapy acting via the 2-5A synthetase/RNase L pathway. Annals of the New York Academy of Sciences, 1993 Jun 23, 685:756-7. UI: 93370925. 2. Lightfoot RW Jr; Luft BJ; Rahn DW; Steere AC; Sigal LH; Zoschke DC; Gardner P; Britton MC; Kaufman RL. Empiric parenteral antibiotic treatment of patients with fibromyalgia and fatigue and a positive serologic result for Lyme disease. A cost-effectiveness analysis [see comments]. Annals of Internal Medicine, 1993 Sep 15, 119(6):503-9. UI: 93362816. 3. Brook MG; Bannister BA; Weir WR. Interferon-alpha therapy for patients with chronic fatigue syndrome [letter]. Journal of Infectious Diseases, 1993 Sep, 168(3):791-2. UI: 93359782. 4. Ray C; Weir W; Stewart D; Miller P; Hyde G. Ways of coping with chronic fatigue syndrome: development of an illness management questionnaire. Social Science and Medicine, 1993 Aug, 37(3):385-91. UI: 93362023. 5. Broughton H. Beyond comprehension [editorial]. Canadian Nurse, 1993 Aug, 89(7):3. UI: 93351107. 6. Blake LS. "It's not in my head". Canadian Nurse, 1993 Aug, 89(7):29-32. UI: 93351106. 7. Blake LS. Sick and tired. Canadian Nurse, 1993 Aug, 89(7):25-8. UI: 93351105. 8. Bond PA. A role for herpes simplex virus in the aetiology of chronic fatigue syndrome and related disorders. Medical Hypotheses, 1993 May, 40(5):301-8. UI: 93354158. 9. Report of the working group on the possible relationship between hepatitis B vaccination and the chronic fatigue syndrome. Canadian Medical Association Journal, 1993 Aug 1, 149(3):314-9. UI: 93338559. 10. Delage G; Salit I; Pennie R; Alary M; Duval B; Ward B. [The possible relation between hepatitis B vaccination and chronic fatigue syndrome]. Union Medicale du Canada, 1993 Jul-Aug, 122(4):278-9. Language: French. UI: 93377302 11. Simpson LO. Chronic fatigue syndrome [letter]. New Zealand Medical Journal, 1993 May 26, 106(956):211-2. UI: 93341764. 12. Meyers DH. Chronic fatigue syndrome and the medical referee [letter]. Medical Journal of Australia, 1993 Sep 20, 159(6):432. UI: 93390407 13. Cox DL; Findley LJ. Chronic fatigue syndrome [letter]. Bmj, 1993 Jul 31, 307(6899):328. UI: 93385941 14. Cathebras P; Bouchou K; Charmion S; Rousset H. [Chronic fatigue syndrome: a critical review]. Revue de Medecine Interne, 1993 Apr, 14(4):233-42. Language: French. UI: 93391816 15. Wray BB; Gaughf C; Chandler FW Jr; Berry SS; Latham JE; Wood L; DuRant RH. Detection of Epstein-Barr virus and cytomegalovirus in patients with chronic fatigue. Annals of Allergy, 1993 Sep, 71(3):223-6. UI: 93384060 16. Matsunaga K. [The "anti-Ki" syndrome: major clinical features]. Rinsho Byori. Japanese Journal of Clinical Pathology, 1993 Aug, 41(8):882-7. Language: Japanese. UI: 93382001 17. Morriss R. Insomnia in the chronic fatigue syndrome [letter]. Bmj, 1993 Jul 24, 307(6898):264. UI: 93379559 -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. USA Interagency meeting on CFS / NIH Workshop The U.S. government's Interagency Committee on CFS will be meeting on Wednesday, Nov. 17 in Washington, DC. The committee is responsible for coordinating the CFS research and activities of all U.S. Public Health Service agencies (NIH, CDC, FDA) and the Social Security Administration. The meeting will be chaired by the U.S. Assistant Secretary for Health, Dr. Philip Lee, M.D. The agenda for the meeting was not available as of this writing. Representatives from various patient advocacy groups are scheduled to testify including the CFIDS Assoc. of America, the National CFS Assoc., the CFIDS Foundation and RESCIND. The U.S. National Institutes of Health will be holding a workshop on the clinical management of CFS on November 18 and 19 at the NIH campus in Bethesda, Maryland. About 150 physicians who specialize in treating CFS patients have been invited to attend, as well as representatives from various national and state patient advocacy groups. The size of the meeting has been kept small to facilitate an effective information exchange among the participants. CFS-NEWS will report on the outcome of both the Interagency Committee meeting and the NIH Workshop in its next issue. [Information provided by NIAID (National Institute of Allergy and Infectious Diseases), the CFIDS Association of America and The Sheridan Group.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>3. International Conference on Chronic Fatigue May 18-20 1994 [The following is the text of the brochure which advertises the May 1994 conference. Additional information not in the original brochure but added by the sponsors appears in brackets.] INTERNATIONAL MEETING ON CHRONIC FATIGUE MAY 18TH - 20TH 1994 DUBLIN, IRELAND The International Meeting is under the auspices of the Ramsay Society, London, and the World Federation of Neurology Research Group on chronic fatigue syndrome. TOPICS ------ Meeting will contain keynote addresses, platform sessions, workshops and poster sessions on clinical and epidemiological aspects, neuroendocrinology / neurotransmitter studies, virology, psychology / psychiatry, immunology, therapy and possible predisposing factors (toxins, organophosphate poisoning). SCIENTIFIC COMMITTEE AND KEYNOTE SPEAKERS INCLUDE: -------------------------------------------------- A Komaroff, Harvard P Levine, NIH D Demitrack, Michigan T Dinan, London J C De La Torre, Squibb Research Centre, La Jolla D Buchwald, Seattle A Smith, Bristol H Moldofsky, Toronto J Levy, San Francisco L K Borysiewicz, Cardiff J Hughes, Cambrige R Edwards, Liverpool J Jones, Denver P O Behan J Aarli, Bergen LOCAL ORGANISING COMMITTEE -------------------------- P O Behan, WMH Behan, J Gow, W Forbes, L Findlay and C Shepherd It is hoped that this International Meeting will bring together Physicians and Physician Scientists and all interested in chronic fatigue syndrome to explore and shed new light on its etiology, pathogenesis and treatment. SOCIAL EVENTS ------------- Dublin is a rich, cultural city. A welcoming reception on the 17th May, 1994 is planned and a farewell banquet on the evening of the 20th May, 1994, after the Ramsay Memorial Lecture. A full social programme will be sent to all of those registering with an accompanying person's programme. Full information on accomodation, including special reduced rates will also be available for those Registering. -------------------------------------------------------------- REGISTRATION FEE: 200 British Pounds Sterling [Registrants outside of the UK should please carefully calculate the current foreign exchange rate and may then send checks in their own country's currency. Patients may attend.] I intend to participate in the meeting and submit a paper for: a) Platform: ............................................... b) Poster session ............................................... Name: ............................................... Designation: ............................................... Address: ............................................... ............................................... ............................................... Tel. No: ............................................... Fax No: ............................................... Deadline for returning Registration Form 15th February, 1994. Registration Fee entitles attendance at all meetings, a copy of the Book of Abstracts, morning coffee, afternoon teas and lunchs throughout the Meeting. Cheques should be made payable to: Dublin CFS Meeting Correspondence: Professor Peter O Behan Department of Neurology Institute of Neurological Sciences Southern General Hopsital Govan Road Glasgow G51 4TF Scotland U.K. [Thanks to Prof. Behan and his staff for their assistance.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>4. Flu shot advice from Cheney Clinic [There have been discussions among many CFS/CFIDS/ME patients on computer networks as to whether it is advisable to get vaccinated for influenza ("the flu"). The following copyrighted text was taken from the information hotline of the CFIDS Association of America with permission. Patients are advised to obtain medical advice from their physicians for their individual situations.] FLU SHOTS by Charles Lapp, MD The Cheney Clinic, Charlotte, North Carolina USA Should patients with Chronic Fatigue and Immune Dysfunction Syndrome be given flu shots or immunizations? For the most part, we at the Cheney Clinic believe it is unnecessay and possibly even risky to take immunizations. Patients with CFIDS already have markedly upregulated immune systems. Any given germ or virus that enters the system is essentially neutralized and destroyed right away. This is why CFIDS patients are apt to remark that it seems they haven't had a cold or the flu since they had this disease. Patients with frequently don't sero convert, which means their immune systems are so dysfunctional that it does not react to the vaccine by making antibodies. A CFIDS patient may take all the risks and discomfort of receiving the immunization only to find out that it does not take. Lastly, patients with upregulated immune systems are felt to be at higher risk for adverse reactions to vaccines and occasionally, we hear of someone who gets extremely ill or relapses after an immunization. At the international conference in Albany, NY, October 1992, these same questions were raised and many researchers could recall sever reactions or relapses to such seemingly harmless vaccines such as measles, tetanus and especially Hepatitis B. On the other hand, immunotherapies, suhc as allergy shots, seem to be tolerated very well. Persons who need the flu vaccine are senior citizens and those with chronic debilitating illnesses, such as severe diabetes, emphysema, and serious heart disorders. We advise our patients that unless you absolutely need a vaccination, it is best to pass it up. [Permission is granted to copy or quote the text above for non- commercial purposes providing the intended meaning is preserved and proper credit is given to the author *and* to the CFIDS Information Line (including the postal address and the toll-free number of the CFIDS Association of America, Inc.) Copyright by the CFIDS Association of America. Inc., PO Box 220398, Charlotte, NC 28222-0398, tel. 1-800-442-3437. The CFIDS Information line is available in the USA at tel. 1-900-896-2343. Calls to the Information Line require a touch-tone phone and are $2 for the first minute and $1 for each additional minute. Again, patients are advised to obtain medical advice from their physicians for their individual situations.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>5. Canada disability benefit information [The following is excerpted from the (Canada) National ME/FM Action Network, Communication #2 of October 1 and is written by the group's president Lydia Neilson.] INSURANCE QUESTIONS AND ANSWERS: -------------------------------- I contacted the Ontario Insurance Commission on some frequently asked questions. (The Ontario Insurance Commission is a provincial regulatory body and, can only comment on Ontario procedures. Address: 5160 Yonge St., Box 85, North York, ON M2N 6L9 - Tel. 1-800-668-0128.) Mr. Bruce D. Green, Insurance Assistance Officer - Market Conduct Branch, in his letter of September 22, 1993 replied as follows: - "Unlike the automobile insurance policy, there is no standardized policy in the disability insurance industry and therefore the answers will vary somewhat from company to company; - Consumer's Right to the Medical Report: When an insurer orders a medical and pays for that report, it becomes their property and the consumer does not have a right to a copy of that report. AN INSURER MAY, UPON REQUEST, SEND A COPY TO THE CLAIMANT'S FAMILY PHYSICIAN; - Consumer's Right to Refuse Medical: An insurer will exercise the right found in most contracts to have the claimant examined by a doctor or specialist of their choice. IF THE CLAIMANT REFUSES THIS APPOINTMENT, THIS REFUSAL MAY PLACE THE CONTINUATION OF BENEFITS IN JEOPARDY; - When an out-of-province doctor is selected by the insurer for an independent medical examination, then THE COSTS INCURRED IN ATTENDING THIS APPOINTMENT SHOULD BE BORNE BY THE INSURER; - Copy of Employer's Policy: A group disability policy is a contract between an employer and the insurance company which provides the benefits to the employees. As the employee is not a party to the contract, however, he/she has no right to a copy. THE EMPLOYEE DOES HAVE A RIGHT TO A CERTIFICATE OF INSURANCE OUTLINING THE COVERAGES AFFORDED UNDER THE PLAN. - Termination of Benefits by Insurer: With disability plans, the medical evidence available to the insurer is the primary factor in the continuation or termination of benefits. If the company has terminated benefits, it is probably due to an absence of objective medical evidence or they have received a medical report which indicates that the consumer is able to return to some form of employment. Many plans contain a change in the definition of "disabled" and as such, the benefits may be terminated at some point due to the claimant's inability to satisfy the new definition of disability. - In many cases, the best way to initiate the continuation of benefits is to provide the insurer with NEW MEDICAL EVIDENCE WHICH WOULD SATISFY THE POLICY'S REQUIREMENTS. Many companies do make appeal processes available to claimants who disagree with a company's interpretation of medical reports, and through these processes, companies are usually quite willing to consider new medical documentation. Should these efforts fail, the claimant may be forced to seek legal advice. - It is critical that each case be analyzed within the scope of the policy wording itself, as there is no standardized policy": [Capitalization shows emphasis added by editor Lydia Neilson.] To obtain information for your province call Superintendent of Financial Institutions: ALBERTA (604) 666-5335 BRITISH COLUMBIA (604) 666-5335 NEW BRUNSWICK (514) 283-5835 NEWFOUNDLAND (514) 283-5835 NOVA SCOTIA (514) 283-5836 ONTARIO (416) 973-6662 PRINCE EDWARD ISLAND (514) 283-5835 QUEBEC (514) 283-5835 SASKATCHEWAN (204) 983-4140 NORTH WEST TERRITORIES (613) 990-7890 MANITOBA (own program) (204) 945-2542 Editor's Note: Call Collect, except for North West Territories. LAWYERS' NETWORK - ME/FM COURT CASES AND LEGAL PRECEDENTS: ----------------------------------------------------------- We are pleased to announce that Lawyer, James L. Vigmond, Esq. has agreed to head up our organization's National Lawyers' Network dedicated to ME/FM cases with a view to developing the appropriate protocal and to provide advice to those who need it. Please inform your lawyer about this valuable assistance that is now available. Mr. Vigmond has done extensive legal research on ME/FM and has and is representing ME/FM patients in the courts. He has also lectured on these topics at Local ME/FM support groups. To assist Mr. Vigmond in getting this National Registry started, please send a copy of any court judgments of relevant cases or advise him of details of court cases so that copies can be obtained to: JAMES L. VIGMOND, Esq, Carroll, Heyd, Vigmond, Solicitors, P.O. Box 548, 89 Collier St., Barrie, ON L4M 4T7 - Fax: (705) 722-0704 - Tel: (705) 722-4400. INSURANCE DISABILITY BENEFITS: ------------------------------ We are also pleased to announce the appointment of BYRON TIMMERMANS as our National Director, Insurance Matters which includes Workmen Compensation cases. Byron is also President of the Northern Ontario Fibromyalgia Network. He is very familiar with the insurance disability problems experienced by many people and often assists them in trying to obtain disability benefits. Byron will be writing in our newsletter about his progress in insurance, CPP and WCB statistics in future issues. In order to put us in a better position of negotiating with the insurance companies, it is important we collect certain information to help our case. We are therefore in the final stages of drafting a questionnaire for your completion and return. This questionnaire will be sent out sometime (hopefully) this month and once the data is in will give us a better idea of how many outstanding insurance cases there are, the names of the insurance companies involved, how many cases are pending for trial, how many are settled and so on. This information will be treated with the utmost of confidentiality and the names of the individuals will be replaced by a number so that there is no chance of identifying anyone. Anyone having problems with collecting their disability pensions and/or with the Workmen's Compensation Board, please get in touch with: BYRON TIMMERMANS, 720 Downland St.,Sudbury, ON P3A 5T3 (705) 560-4936 TIP: ---- Tax Information for People with Disabilities "Services for People with Disabilities - Claiming the Disability Tax Credit" Booklet P149(E) - Call your local District Taxation Office for this booklet. ----------------------------------------------------------------- PERMISSION is granted to non-profit publications to reproduce original articles of the NATIONAL ME/FM ACTION NETWORK provided due credit is given to the NATIONAL ME/FM ACTION NETWORK, 3836 Carling Ave., Hwy 17B, Nepean, ON K2H 7V2 CANADA - Tel. (613) 829-6667 MEMBERSHIP FEES: *$20.00 per year. N.B. We have applied for charitable status which has not as yet been approved. Therefore, we are unable to issue a tax receipt. We are incorporated as a non-profit organization. DISCLAIMER: The NATIONAL ME/FM ACTION NETWORK serves as a clearing house for ME/FM information. The ideas expressed by each columnist are strictly his/her own. Some of the information contained herein is intended to help patients and their physicians make informed decisions about their health. However, the NATIONAL ME/FM ACTION NETWORK does not dispense medical advice or endorse any specific medical hypothesis or product and assumes no responsibiity for any treatment or action undertaken by its readers. [This article was obtained through the assistance of Sandy Shaw.] =================================================================== CFS-NEWS (ISSN 1066-8152) is an international newsletter published and edited by Roger Burns in Washington D.C. It is distributed: through the "CFS echo" (discussion group) on the Fidonet volunteer network of BBSs; via the NIHLIST Listserv on Internet; and as USENET Newsgroup bit.listserv.cfs.newsletter. Back issues are on file on the Project ENABLE BBS in West Virginia USA at telephone 1-304-759- 0727 in file area 22, and the valuable patient resource file named CFS-RES.TXT is available there too. Suggestions and contributions of news may be sent to Roger Burns at Internet CFS-NEWS@LIST.NIH.GOV or by Fido NetMail to 1:109/432, or at telephone 1-202-966-8738, or postal address 2800 Quebec St. NW #1242, Washington DC 20008 USA, or post a message to the CFS echo or to the Internet CFS-L group or to newsgroup alt.med.cfs. Copyright (c) 1993 by Roger Burns. Permis- sion is granted to excerpt this document if the source (CFS-NEWS) is cited. Permission is also granted to reproduce the entirety of this document unaltered. This notice does not diminish the rights of others whose copyrighted material as so noted may be quoted herein. Note that Fido and Fidonet are registered marks of Tom Jennings and Fido Software. =================================================================== INTERNET users are encouraged to obtain the CFS-RES TXT resource file and other CFS files at the NYSDH file server. Send the command GET CFS-RES TXT (or for a full list of files, send GET CFS-D FILELIST) by Internet e-mail to the address LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU . Distribution of CFS-NEWS on the Internet is sponsored by the NIH Computing Utility. However, the content of this independent newsletter and the accuracy of the sources which it cites are solely the responsibility of Roger Burns. To subscribe, send the command SUB CFS-NEWS to the address LISTSERV@NIHLIST.BITNET or LISTSERV@LIST.NIH.GOV . To get back issues, send GET CFS-NEWS INDEX to either the Listserv at list.nih.gov or at the Albany address cited above, and follow the instructions in the file. Anonymous ftp available from list.nih.gov (128.231.64.10), directory cfs-news. ===================================================================== ******************************************************************************