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. 36 June 30, 1994 Washington DC -------------------------------------------------------------------- MEDICAL PUBLICATIONS UPDATE / COMMENTS ON DUBLIN CONFERENCE CONTENTS >>>1. Medical publications update >>>2. Comments on Dublin Conference NOTE: Dr. Dedra Buchwald, M.D. is looking for a few more volunteers for her study of identical twins where one twin has CFS and the other does not. Please contact her at tel. 1-206-223-3111 (leave a message for Dr. Buchwald including a return phone number, and state that you are calling about the "twin study"). ------------------------------------------------------------------- >>>1. Medical publications update [The following was contributed by Mr. Steve Clancy, the sysop of the Wellspring BBS which is a service of the Science Library of the University of California at Irvine. The material originally submitted included citations for the January '94 special supplement of Clinical Infectious Diseases, however these were listed in detail in CFS-NEWS no. 32 (March 31, 1994) and so are not repeated below.] 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, Science 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. King JC; Goddard MJ. "Pain rehabilitation: Chronic pain syndrome and myofascial pain" Archives of Physical Medicine and Rehabilitation, 1994 May, 75(5 Spec No):S9-14. UID: 94241867. 2. Trojani FT. [Chronic fatigue syndrome]. Clinica Terapeutica, 1994 Mar, 144(3):269-72. UID: 94236890. 3. Trojani FT. [Chronic fatigue syndrome]. Clinica Terapeutica, 1994 Feb, 144(2):163-6. UID: 94236877. 4. Mawle AC; Reyes M; Schmid DS. "Is chronic fatigue syndrome an infectious disease?" Infect Agents Dis, 1993 Oct, 2(5):333-41. UID: 94228156. 5. McGarry F; Gow J; Behan PO. "Enterovirus in the chronic fatigue syndrome" [letter]. Annals of Internal Medicine, 1994 Jun 1, 120(11):972-3. UID: 94226444. 6. Hauben M. "Quinacrine and chronic fatigue syndrome" [letter]. American Family Physician, 1994 May 1, 49(6):1354. UID: 94225993. 7. Demitrack MA. "Chronic fatigue syndrome: a disease of the hypothalamic-pituitary-adrenal axis?" [editorial]. Annals of Medicine, 1994 Feb, 26(1):1-5. UID: 94220286. 8. Roberts L; Byrne E. "Single fibre EMG studies in chronic fatigue syndrome: a reappraisal". Journal of Neurology, Neurosurgery and Psychiatry, 1994 Mar, 57(3):375-6. UID: 94209963. 9. Behan WM; Behan PO. "The role of viral infection in polymyositis, dermatomyositis and chronic fatigue syndrome". Baillieres Clin Neurol, 1993 Nov, 2(3):637-57. UID: 94207490. 10. Manu P; Lane TJ; Matthews DA; Castriotta RJ; Watson RK; Abeles M. "Alpha-delta sleep in patients with a chief complaint of chronic fatigue". Southern Medical Journal, 1994 Apr, 87(4):465-70. UID: 94204795. 11. Berg PA; Klein R. [The fibromyalgia syndrome. A neuroendocrinological autoimmune disease?]. Deutsche Medizinische Wochenschrift, 1994 Mar 25, 119(12):429-35. UID: 94192457. 12. MacLean G; Wessely S. "Professional and popular views of chronic fatigue syndrome". Bmj, 1994 Mar 19, 308(6931):776-7. UID: 94191461. 13. Pawlikowska T; Chalder T; Hirsch SR; Wallace P; Wright DJ; Wessely SC. "Population based study of fatigue and psychological distress". Bmj, 1994 Mar 19, 308(6931):763-6. UID: 94191458. 14. Wilson A; Hickie I; Lloyd A; Hadzi-Pavlovic D; Boughton C; Dwyer J; Wakefield D. "Longitudinal study of outcome of chronic fatigue syndrome". Bmj, 1994 Mar 19, 308(6931):756-9. UID: 94191453. 15. Lawrie SM; Pelosi AJ. "Chronic fatigue syndrome: prevalence and outcome" [editorial; comment]. Bmj, 1994 Mar 19, 308(6931):732-3. UID: 94191446. 16. Schwartz RB; Komaroff AL; Garada BM; Gleit M; Doolittle TH; Bates DW; Vasile RG; Holman BL. "SPECT imaging of the brain: comparison of findings in patients with chronic fatigue syndrome, AIDS dementia complex, and major unipolar depression" Ajr. American Journal of Roentgenology, 1994 Apr, 162(4):943-51. 17. Schwartz RB; Garada BM; Komaroff AL; Tice HM; Gleit M; Jolesz FA; Holman BL. "Detection of intracranial abnormalities in patients with chronic fatigue syndrome: comparison of MR imaging and SPECT." Ajr. American Journal of Roentgenology, 1994 Apr, 162(4):935-41. UID: 94189426. 18. Saisch SG; Deale A; Gardner WN; Wessely S. "Hyperventilation and chronic fatigue syndrome." Quarterly Journal of Medicine, 1994 Jan, 87(1):63-7. UID: 94188484. 19. Natelson BH; Cohen JM; Brassloff I; Lee HJ. "A controlled study of brain magnetic resonance imaging in patients with the chronic fatigue syndrome" Journal of the Neurological Sciences, 1993 Dec 15, 120(2):213-7. UID: 94186821. 20. Clee MD; McLaughlin K. "Complications of sarcoidosis. Chronic fatigue syndrome [letter]." Sarcoidosis, 1993 Sep, 10(2):138. UID: 94188589 21. Dakin G. "Chronic illness: me and you and me" Nursing Times, 1993 Aug 25-31, 89(34):38-41. UID: 94188156 22. Roulet Perez E; Maeder P; Cotting J; Eskenazy-Cottier AC; Deonna T. "Acute fatal parainfectious cerebellar swelling in two children. A rare or an overlooked situation?" Neuropediatrics, 1993 Dec, 24(6):346-51. UID: 94181121 23. McDonald E; David AS; Pelosi AJ; Mann AH. "Chronic fatigue in primary care attenders" Psychological Medicine, 1993 Nov, 23(4):987-98. UID: 94181722 24. Bialyszewski A. [The chronic fatigue syndrome]. Psychiatria Polska, 1993 Nov-Dec, 27(6):601-11. UID: 94181694 25. James DG. "Complications of sarcoidosis. Chronic fatigue syndrome [editorial]" Sarcoidosis, 1993 Mar, 10(1):1-3. UID: 94181934 26. Auger PL; Gourdeau P; Miller JD. "Clinical experience with patients suffering from a chronic fatigue-like syndrome and repeated upper respiratory infections in relation to airborne molds" American Journal of Industrial Medicine, 1994 Jan, 25(1):41-2. UID: 94161029 27. Komaroff AL; Bell DS; Cheney PR; Lo SC. "Absence of antibody to Mycoplasma fermentans in patients with chronic fatigue syndrome [letter]" Clinical Infectious Diseases, 1993 Dec, 17(6):1074-5. UID: 94154119 28. Ogawa R. [Chronic fatigue symptom] Kango, 1993 Apr, 45(4):159-68. UID: 94150067 29. Natelson BH; Ye N; Moul DE; Jenkins FJ; Oren DA; Tapp WN; Cheng YC. "High titers of anti-Epstein-Barr virus DNA polymerase are found in patients with severe fatiguing illness" Journal of Medical Virology, 1994 Jan, 42(1):42-6. UID: 94141478 30. Rebora A; Drago F. "Chronic fatigue syndrome: a novel disorder with cutaneous manifestations" Dermatology, 1994, 188(1):3-5. UID: 94138104 31. Bates DW; Schmitt W; Buchwald D; Ware NC; Lee J; Thoyer E; Kornish RJ; Komaroff AL. "Prevalence of fatigue and chronic fatigue syndrome in a primary care practice" Archives of Internal Medicine, 1993 Dec 27, 153(24):2759-65. UID: 94079490 32. Jason LA; Taylor SL; Johnson S; Goldston SE; Salina D; Bishop P; Wagner L. "Prevalence of chronic fatigue syndrome-related symptoms among nurses" Evaluation and the Health Professions, 1993 Dec, 16(4):385-99. UID: 94085438 33. McLaughlin B. "Virology laboratory diagnosis of chronic fatigue syndrome" Canada Diseases Weekly Report, 1991 Jan, 17 Suppl 1E:51-5. UID: 94074004 34. Richman JA; Flaherty JA; Rospenda KM. "Chronic fatigue syndrome: have flawed assumptions been derived from treatment-based studies?" American Journal of Public Health, 1994 Feb, 84(2):282-4. UID: 94127641 35. Shepherd C. "Chronic fatigue syndrome or myalgic encephalitis [letter]" Lancet, 1994 Jan 22, 343(8891):243. UID: 94118689 36. Howes S. "Chronic fatigue syndrome or myalgic encephalitis [letter]" Lancet, 1994 Jan 22, 343(8891):243. UID: 94118688 37. Arber M; Macintyre A. "Chronic fatigue syndrome or myalgic encephalitis [letter]" Lancet, 1994 Jan 22, 343(8891):242-3. UID: 94118687 38. Honda M; Kitamura K; Nakasone T; Fukushima Y; Matsuda S; Nishioka K; Matsuda J; Hashimoto N; Yamazaki S. "Japanese patients with chronic fatigue syndrome are negative for known retrovirus infections" Microbiology and Immunology, 1993, 37(10):779-84. UID: 94118907 39. Blondel-Hill E; Shafran SD. "Treatment of the chronic fatigue syndrome. A review and practical guide" Drugs, 1993 Oct, 46(4):639-51. UID: 94109295 40. Mossin S. [Diffuse suffering. Suspect behavior of patients with illness without objective medical findings] Sykepleien Fag, 1993 Dec 7, 81(6):3-6. UID: 94101008 41. Young A. "Amma therapy: a holistic approach to chronic fatigue syndrome" Journal of Holistic Nursing, 1993 Jun, 11(2):172-82. UID: 94103595 42. Morris DH; Stare FJ. "Unproven diet therapies in the treatment of the chronic fatigue syndrome" Archives of Family Medicine, 1993 Feb, 2(2):181-6. UID: 94101089 43. Raik E. "Chronic fatigue syndrome and the medical referee [letter]" Medical Journal of Australia, 1994 Jan 3, 160(1):47-8. UID: 94097268 44. Howland RH. "General health, health care utilization, and medical comorbidity in dysthymia" International Journal of Psychiatry in Medicine, 1993, 23(3):211-38. UID: 94095307 45. Camus F; Henzel D; Janowski M; Raguin G; Leport C; Vilde JL. "Unexplained fever and chronic fatigue: abnormal circadian temperature pattern" European Journal of Medicine, 1992 Apr, 1(1):30-6. UID: 94093849 46. Aoki T; Miyakoshi H; Usuda Y; Herberman RB. "Low NK syndrome and its relationship to chronic fatigue syndrome" Clinical Immunology and Immunopathology, 1993 Dec, 69(3):253-65. UID: 94062160 47. Kitani T. [Chronic fatigue syndrome] "Nippon Naika Gakkai Zasshi. Journal of Japanese Society of Internal Medicine, 1993 Sep 10, 82(9):1571-6. UID: 94065413 48. David A; Wessely S. "Chronic fatigue, ME, and ICD-10 [letter]" Lancet, 1993 Nov 13, 342(8881):1247-8. UID: 94048692 49. Lerner AM; Lawrie C; Dworkin HS. "Repetitively negative changing T waves at 24-h electrocardiographic monitors in patients with the chronic fatigue syndrome. Left ventricular dysfunction in a cohort" Chest, 1993 Nov, 104(5):1417-21. UID: 94038152 50. Chalder T; Deale A. "Don't dismiss exercise [letter]" Nursing Times, 1993 Oct 20-26, 89(42):22-3. UID: 94051703 51. Fucikova T; Petanova J. [Chronic fatigue syndrome] Vnitrni Lekarstvi, 1993 Oct, 39(10):995-1002. UID: 94055139 52. Schwartz JE; Jandorf L; Krupp LB. "The measurement of fatigue: a new instrument" Journal of Psychosomatic Research, 1993 Oct, 37(7):753-62. UID: 94046722 53. Mathieson A. "Myalgic encephalomyelitis: continuing the debate" Nursing Standard, 1993 Sep 22-28, 8(1):20-1. UID: 94031638 54. Chester AC. "Symptom relief after endoscopic sinus surgery: an outcomes-based study [letter]" Ear, Nose, and Throat Journal, 1993 Sep, 72(9):633; discussion 634. UID: 94038736 55. Pietrewicz M. [A case of infectious mononucleosis syndrome caused by cytomegalovirus] Przeglad Epidemiologiczny, 1993, 47(3):313-6. UID: 94052767 -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. Comments on Dublin Conference An International Conference on Chronic Fatigue was held on May 18 through 20, 1994 in Dublin, Ireland. Several participants recently offered comments to CFS-NEWS about the conference. Few things that were genuinely new were presented at the conference, although many of the presentations were being heard for the first time by the largely European audience. Some medical professionals who attended have said that some of the most interesting portions were those things that came up during the discussion sessions rather than in the formal presentations. (These discussions are equally referred to in the descriptions below.) Many Europeans drew encouragement from the event and felt overall a sense of legitimization for the illness that hadn't been present at other conferences they had attended. Dr. Juan Carlos De La Torre (Scripps Research Center, La Jolla, California) discussed animal evidence that some viruses may exist indefinitely inside of cells without causing inflammation or necrosis (cell death) but which may nonetheless affect cell metabolism and be virtually undetectable otherwise. Some work was described which showed that vaccinations are not a trigger for CFS, however Dr. Charles Shepherd found this evidence unconvincing and he commented to CFS-NEWS that he was standing by the previous work to the contrary done by himself and Dr. Byron Hyde. Dr. Marinos Dalakas (NIH) spoke about parallels between CFS and post-polio syndrome. Dr. Anthony Komaroff discussed SPECT and MRI scans, and definitional issues. There were presentations on muscle dysfunction, some confirmatory of earlier work but others not. Dr. Mark Demitrack discussed HPA involvement. Dr. MacGregor of Australia spoke about a fish toxin which apparently induced symptoms of CFS/ME. Dr. Swinburne of Leeds and Dr. Wilhemina Behan of Glasgow described findings of phosphate depletion associated with ATP abnormalities, and mitochondrial dysfunction. Prof. John Hughes of Cambridge discussed the neurotransmitter CCK which he found in excessive levels in CFS patients, which would prompt oversensitivity to pain as well as other symptoms. Prof. Hughes said he was searching for a CCK suppressor which might be a potential treatment. Regarding treatments, there was some discussion about carnitine supplements by Dr. Kuratsume from Japan, as well as a finding that acyl-carnitine levels correlate to severity of symptoms. Dr. E.C. Bergman of South Africa spoke about the use of ETDA, a chelation of calcium. There were also reports about the development of several program centers that provide assistance specifically for CFS/ME patients. CFS-NEWS expects to publish a more detailed report in the near future from one of the participants of the conference. [Many thanks to Doctors Ann MacIntyre, Charles Shepherd, and Charles Lapp for sharing their impressions with CFS-NEWS. Thanks also to Dr. Ellen Goudsmit, PhD. of IFMEA, Vicky Carpman, editor of the CFIDS Chronicle, and Leslie Boyer for special assistance.] =================================================================== CFS-NEWS (ISSN 1066-8152) is an international newsletter published and edited by Roger Burns in Washington D.C. It is distributed: through the "CFS echo" (discussion group) on the Fidonet volunteer network of BBSs; via the NIHLIST Listserv on Internet; and as USENET Newsgroup bit.listserv.cfs.newsletter. Back issues are on file on the Project ENABLE BBS in West Virginia USA at telephone 1-304-759- 0727 in file area 22, and the valuable patient resource file named CFS-RES.TXT is available there too. Suggestions and contributions of news may be sent to Roger Burns at Internet CFS-NEWS@LIST.NIH.GOV or by Fido NetMail to 1:109/432, or at telephone 1-202-966-8738, or postal address 2800 Quebec St NW, no. 1242, Washington DC 20008 USA, or post a message to the CFS echo or to the Internet CFS-L group or to newsgroup alt.med.cfs. Copyright (c) 1994 by Roger Burns. Per- mission is granted to excerpt this document if the source (CFS-NEWS Electronic Newsletter) is cited. Permission is also granted to reproduce the entirety of this document unaltered. This notice does not diminish the rights of others whose copyrighted material as so noted may be quoted herein. Note that Fido and Fidonet are registered marks of Tom Jennings and Fido Software. =================================================================== INTERNET users are encouraged to obtain the CFS-RES TXT resource file and other CFS files at the NYSDH file server. Send the command GET CFS-RES TXT (or for a full list of files, send GET CFS-D FILELIST) by Internet e-mail to the address LISTSERV%ALBNYDH2.BITNET@ALBANY.EDU . Distribution of CFS-NEWS on the Internet is sponsored by the NIH Computing Utility. However, the content of this independent newsletter and the accuracy of the sources which it cites are solely the responsibility of Roger Burns. To subscribe, send the command SUB CFS-NEWS to the address LISTSERV@NIHLIST.BITNET or LISTSERV@LIST.NIH.GOV . To get back issues, send GET CFS-NEWS INDEX to either the Listserv at list.nih.gov or at the Albany address cited above, and follow the instructions in the file. Anonymous ftp available from list.nih.gov (128.231.64.10), directory cfs-news. =====================================================================