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. 25 October 31, 1993 Washington DC -------------------------------------------------------------------- I.F.M.E.A. MEDICAL UPDATE CONTENTS >>>1. I.F.M.E.A. Medical Update >>>2. Review of Australian research >>>3. Ampligen research >>>4. May 12 organization begins early preparations As the CFS-NEWS editor is still doing some catch-up work, some news in this and upcoming issues may be slightly outdated, such as the report on Australian research shown in article #2 below which was originally released on Feb. 10, 1993. Please bear with us. -- Editor ------------------------------------------------------------------- >>>1. I.F.M.E.A. Medical Update The International Federation of Myalgic Encephalomyelitis Associations (IFMEA) compiles a quarterly medical update which contains abstracts and reviews, written by medical professionals, of current research on CFS/CFIDS/ME. The full text of the Update is available from the national organizations listed at the end of this article. The following is a list of the publications which are summarized and reviewed in the summer 1993 issue of the Update: ===================================================================== NEUROLOGY\PSYCHIATRY Pepper, CM., Krupp, LB., Friedberg, F., Doscher, C and Coyle, PK. A comparison of neuropsychiatric characteristics in chronic fatigue syndrome, multiple sclerosis, and major depression. Journal of Neuropsychiatry and Clinical Neurosciences, 1993, 5, 200-205. Krupp, LB., Jandorf, L., Coyle, PK and Mendelson, WB. Sleep disturbance in chronic fatigue syndrome. Journal of Psychoso-matic Medicine, 1993, 37, 4, 325-331. NEW MEASURES Chalder, T., Berelowitz, G., Pawlikowska, T., Watts, L., Wessely, S., Wright, D and Wallace, EP. Development of a fatigue scale. Journal of Psychosomatic Research, 1993, 37, 2, 147-153. Ray, C., Weir, W., Stewart, D., Miller, P and Hyde, G. Ways of coping with chronic fatigue syndrome: development of an illness management questionnaire. Social Science and Medicine, 1993, 37, 3, 385-391. REVIEWS Bakheit, AM. Postviral fatigue syndrome. The Practitioner, 1993, 237, 610-614. Bertolin, JM and Bertolin, V. Chronic fatigue syndrome. Biologic and psychopathologic investigations. Medicina Clinica, 1993, 101, 2, 67-75. (In Spanish) Cathebras, P., Bouchou, K., Charmion, S and Rousset, H. Le syndrome de fatigue chronique: une revue critique. La Revue de Medecine Interne, 1993, 14, 233-242. (In French). Clements, G. Viruses and chronic fatigue. Psychiatry in Practice, 1993, Summer, 11-14. Goldenberg, DL. Fibromyalgia, chronic fatigue syndrome and myofascial pain syndrome. Current Opinion in Rheumatology, 1993, 5, 199-208. Hashimoto, N. Chronic fatigue syndrome. Japanese Journal of Clinical Medicine, 1993, 51, Suppl. 1107-1114. (In Japanese). MISCELLANEOUS Barnes, PRJ., Taylor, DJ., Kemp, GJ and Radda, GK. Skeletal muscle bioenergetics in the chronic fatigue syndrome. Journal of Neurology, Neurosurgery and Psychiatry, 1993, 56, 6, 679-683. Bond, PA. A role for herpes simplex virus in the aetiology of chronic fatigue syndrome and related disorders. Medical Hypotheses, 1993, 40, 301-308. Cox, DL and Findley, L. Chronic fatigue syndrome. British Medical Journal, 307, 328. Delage, G et al. Report of the working group on the possible relationship between hepatitis B vaccination and the chronic fatigue syndrome. Canada Communicable Disease Report, 1993, 19, 4, 25-28. Denz-Penhey, H and Murdoch, JC. General practitioners acceptance of the validity of chronic fatigue syndrome as a diagnosis. New Zealand Journal of Medicine, 1993, 106, 953, 122-124. Denz-Penhey, H and Murdoch, JC. Service delivery for people with chronic fatigue syndrome: a pilot action research study. Family Practice, 1993, 10, 1, 14-18. Duncan, I. Insomnia in chronic fatigue syndrome. British Medical Journal, 1993, 306, 1480. Goudsmit, E. Misleading facts add to M.E. misery. Doctor, 1993, 19th August, 20. Grafman, J., Schwartz, V., Dale, JK., Scheffers, M., Houser, C and Straus, SE. Analysis of neuropsychological functioning in patients with chronic fatigue syndrome. Journal of Neurology, Neurosurgery and Psychiatry, 1993, 56, 6, 684-689. Lusso, P., Malnati, MS., Garzino-Demo, A., Crowley, RW., Long, EO and Gallo, RC. Infection of natural killer cells by human herpesvirus 6. Nature, 1993, 362, 458-462. Lutgendorf, SK., Brickman, A., Antoni, MH., Klimas, N., Patarca, R., Imia-Fins, A., Ironson, G., Quillian, R., van Riel, F and Fletcher, M. Immune functioning predicts cognitive difficulties in chronic fatigue syndrome. Psychosomatic Medicine, 1993, 55, 100. (Abstract) Morris, DH and Stare, FJ. Unproven diet therapies in the treatment of chronic fatigue syndrome. Archives of Family Medicine, 1993, 2, 181-186. Perrins, DJD. Myalgic encephalomyelitis (M.E.) treated with hyperbaric oxygen - a preliminary communication. Proceedings of the Tenth International Congress on Hyperbaric Medicine, held in Amsterdam, August 11-18, 1990. pp. 123-125. Shapiro, CM., Devins, GM and Hussain, MRG. Sleep problems in patients with medical illness. British Medical Journal, 1993, 306, 1532-1535. Simpson, LO., Murdoch, JC and Herbison, GP. Red cell shape changes following trigger finger fatigue in subjects with chronic tiredness and healthy controls. New Zealand Medical Journal, 1993, 106, 952, 104-107. Sternberg, EM. Hypoimmune fatigue syndromes: diseases of the stress response? Journal of Rheumatology, 1993, 20, 418-421. Thomas, PK. The chronic fatigue syndrome: what do we know. British Medical Journal, 1993, 306, 1557-8. RESEARCH ON OTHER DISORDERS Carroll, BT., Kathol, RG., Noyes, R., Wald, TG and Clamon, GH. Screening for depression and anxiety in cancer patients using the Hospital Anxiety and Depression Scale. General Hospital Psychi-atry, 1993, 15, 69-74. Davey, GC., Tallis, F and Hodgson, S. The relationship between information-seeking and information-avoiding coping styles and the reporting of psychological and physical symptoms. Journal of Psychosomatic Research, 1993, 37, 4, 333-344. DeVellis, B M. Depression in rheumatological diseases. Bailliere's Clinical Rheumatology, 1993, 7, 2, 241-257. McDonald, E., Cope, H and David, A. Cognitive impairment in patients with chronic fatigue: a preliminary study. Journal of Neurology, Neurosurgery and Psychiatry, 1993, 56, 812-815. Ridsdale, L., Evans, A., Jerrett, W., Mandalia, S., Osler, K and Vora, H. Patients with fatigue in general practice: a prospec-tive study. British Medical Journal, 1993, 307, 103-106. Ward, MM and Leigh, JP. Marital status and the progression of functional disability in patients with rheumatoid arthritis. Arthritis and Rheumatism, 1993, 36, 5, 581-588. Yehuda, R., Resnick, H., Kahana, B and Giller, EL. Long-lasting hormonal alterations to extreme stress in humans: normative or maladaptive? Psychosomatic Medicine, 1993, 55, 287-297. BOOKS Donoghue, PJ and Siegel, M. Sick and Tired of Feeling Sick and Tired. London: W.W. Norton. 1993. Hb. 284 pp. #15.95. Ho-Yen, D. Better Recovery From Viral Illnesses. Third Edition. 1993. Available from Dodona Books, The Old Schoolhouse, Kirkhill, Inverness, IV5 7PE. Pb. 240 pp. #14.50. Goldstein, JA. Chronic Fatigue Syndromes: The Limbic Hypothesis. New York: Haworth Medical Press. 1993. Hb. 259 pp. $49.95 plus $2.75 postage and packaging ($4.50 for orders outside America). This Update was compiled by IFMEA's Information Unit with help from Drs. EM Goudsmit, Dr. A. Macintyre, Dr. S. Shepherd, Ms. Barbara Tzoebska from Nature, Mr. David Axford, Mrs. G. Glover and Mrs. S. Howes. The International Federation of M.E. Associations (IFMEA) disseminates information about M.E./CFIDS and related disorders. The organisation cannot dispense medical advice, nor does it endorse any medical product. -------------------------------------------- To obtain copies of the full text (not shown here) of the IFMEA Medical Update which summarizes and reviews the publications cited above, contact one of the member national organizations listed below: USA: CFIDS Association, P O Box 220398, Charlotte, NC 28222-0398 the IFMEA Medical Update is available at $3 per copy UK: M.E. Association, Box 8, Stanford-le-Hope, Essex SS17 8EX annual subscription to quarterly IFMEA Medical Update is #8/yr. Netherlands: M.E. Stichting, Postbus 57436, 1040 BH Amsterdam the IFMEA Medical Update is summarized in the MEdium newsletter (printed in Dutch only, 30 guilders/yr.); the full text of the Update is available for the cost of copying & postage -- contact the office to ask what the exact price is (it is different for each issue) Norway: Norges M.E. Forening, Eikveien 96A, 1345 Osteras for now, the IFMEA Medical Update is provided at no charge to members (membership dues are 200 krona per year) [The Information above was provided by IFMEA and through the assistance of David Axford.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. Review of Australian research Research report for 1992 by Associate Professor Denis Wakefield received 10 February 1993 -- Chronic Fatigue Syndrome Research at the Prince Henry Hospital Introduction Research into the clinical features, laboratory abnormalities and treatment of chronic fatigue syndrome has continued at a rapid pace in our laboratories over the past year. Several of the major concepts initially developed as a result of our studies have gained widespread acceptance by other researchers around the world. In particular our initial concept that chronic fatigue is caused by an abnormal immune system secreting chemicals (cytokines) that produce fatigue in patients following viral infection has gained widespread acceptance and has provided the impetus for numerous research projects. In addition, our criticism of the CDC's criteria for the diagnosis of the chronic fatigue syndrome as it was too restrictive and excluded patients who had any form of psychological problems has now gained acceptance. Thirdly, a number of other research groups have substantiated the results of our earlier studies on immune abnormalities and clinical features of patients with chronic fatigue syndrome. Development of a Diagnostic Instrument for CFS We have co-ordinated a multinational study of six international centres to develop a diagnostic instrument for use in clinical assessment of patients with the chronic fatigue syndrome. Dr Andrew Wilson is presently analyzing the data generated on over six hundred patients. This information will be used to develop and refine diagnostic criteria for chronic fatigue syndrome. The information obtained from this study will also give greater information into the nature and natural history of the chronic fatigue syndrome. This study is the largest and most comprehensive attempt yet to develop diagnostic criteria for chronic fatigue syndrome and should represent a major advance in the assessment of patients with this debilitating condition. Intravenous Immunoglobulin Trial The results of the multi-centre intravenous immunoglobulin trial have now been compiled. The results of this study are presently being analyzed with a view to presenting a report in the medical literature in the next few months. It would be premature for me to disclose the results of this study at this point in time, and it is important that the results be carefully analyzed because of the profound influence they will have on the treatment of patients with this disease. This study involved researchers in Canberra and Melbourne as well as the Prince Henry Hospital group of investigators. Previous studies performed by our group had disclosed that high dose intravenous immunoglobulin led to a beneficial effect in approximately 43% of patients with the chronic fatigue syndrome. A smaller study in the United States failed to confirm our initial finding. The aim of this second study was to confirm our first study and also to ascertain whether lower doses of the immunoglobulin were also beneficial in the treatment of this disease. Moclobemide Trial We are presently concluding a double blind placebo controlled trial of the drug Moclobemide in the treatment of chronic fatigue syndrome. This drug was originally developed as an antidepressant but was subsequently noted to increase energy levels in patients with CFS. It is hoped that the results of this study will give the support to our hypothesis that monoamino oxidating inhibitor drugs, such as Moclobemide, are beneficial in the treatment of patients with the chronic fatigue syndrome. Transfer Factor Trial We have previously conducted a double blind placebo controlled trial comparing transfer factor therapy with a placebo treatment in patients with chronic fatigue syndrome. This study, although failing to show any benefit from the use of transfer factor, was an important study and will be published in the near future in the American Journal of Medicine. As a result of this study transfer factor is no longer available for the treatment of patients with the chronic fatigue syndrome. Cytokines Funds provided by the CFS/ME Society enabled us to establish a Cytokine Laboratory and we have recently completed a number of studies looking at the possible role of these chemicals in the pathogenesis of chronic fatigue. We have previously shown that the cytokine levels detected in the blood of patients with chronic fatigue syndrome did not differ from normal healthy subjects, or from people with depression. We have recently shown that the cytokine levels in patients with the chronic fatigue syndrome did not elevate after exercise more than those of normal subjects. We had previously thought that subjects with chronic fatigue syndrome may have an abnormal response following exercise and that increased cytokines produced as a result of the exercise may lead to profound post- exercise fatigue (as experienced by many subjects). Unfortunately, this study which looked at only a small number of cytokines failed to show any difference between the two groups. It is possible that other cytokines not yet measured may in fact be abnormally elevated following exercise and we plan to examine a variety of other cytokines and interferons in this system in order to ascertain whether there is a different response between normal subjects and patients with the chronic fatigue syndrome. Mental Fatigue Ms Ute Vollmer-Conna (Researcher Psychologist) has recently completed a comprehensive assessment of patients with the chronic fatigue syndrome, normal subjects and patients with acute viral infections. Ms Vollmer-Conna, who is funded by a grant from the ME/CFS Society, has now completed her studies and is presently analysing the results of her testing with a view to publishing them in the near future. The aim of this study was to examine cognitive dysfunction in patients with chronic fatigue syndrome and in particular to look at aspects of concentration, memory and distractability. Future Directions The Prince Henry Hospital's Chronic Fatigue Research Groups continues to lead the world in research into this disease. In order for us to maintain our leading role in research increased funding will be required over the next twelve months. It is envisaged that we will continue our research into the role of cytokines in the chronic fatigue syndrome, in particular looking at different cytokines in peripheral blood and spinal fluid from patients with chronic fatigue syndrome in order to ascertain whether these chemicals do in fact cause this disease. In addition, we plan to continue our assessment of the cognitive functional aspects of patients with the chronic fatigue syndrome and propose to conduct further scientifically valid double blind placebo controlled trials in a number of different treatment modalities in patients with this disease. The long term follow up study will continue and we will apply the new diagnostic instrument we are developing to assess patients with the chronic fatigue syndrome. Dr Andrew Lloyd will return to Prince Henry Hospital in June of 1993. Andrew has been studying in the United States doing fundamental research into the role of cytokines causing human disease. Andrew's return should provide and increased impetus and we greatly look forward to his return in the middle of the year. Funding provided by the ME/CFS Society has allowed us to employ a Scientific Officer as well as provided much needed monies for cytokine kits, culture equipment and disposables which are so important to medical research. Without this support our research could not continue. [This article originally appeared in the March 1993 "ME and YOU", the newsletter of the ME/CFS Society of NSW, Inc., and the above text was copied from a reprint in the June 1993 eMErge newsletter of the ME/CFS Society of Victoria.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>3. Ampligen research Research on Ampligen was presented at a medical conference in mid October. Although the research presented was not about Ampligen's potential application to CFS, there nonetheless has been keen interest in the CFS community about *any* continued research on Ampligen, since the research company which holds the patent on Ampligen has had an immense amount of financial difficulties and there has been concern as to whether this drug will become fully developed and licensed for treatment for CFS or other illnesses. Scientists from HEM Pharmaceuticals (the originator of Ampligen) presented 3 papers regarding Ampligen treatments for HIV disease and murine hepatitis at the 32nd Interscience Conference on Antimicrobial Agents and Chemotherapy (ICAAC) sponsored by the American Society for Microbiology, held in New Orleans. The papers showed that (1) Ampligen, when applied with AZT in vivo, showed a better ability to preserve CD4 counts and functionality than AZT did alone, and that in vitro bone marrow toxicity of the combination was no higher than for AZT alone; (2) mice infected with murine hepatitis virus strain 3 and then treated with Oragen 0004 (a form of Ampligen) had a 90% survival rate, whereas infected mice that were untreated all died of fulminant hepatic failure; and (3) HIV patients given both Ampligen and AZT showed better CD4 levels and DTH response than HIV patients who were given placebo and AZT *IF* the patients started with CD4 counts of higher than 300, otherwise there was no significant difference between the two groups. [Information provided by HEM Pharmaceuticals. The weekly New York Native had indicated last month (see CFS-NEWS #24) that HEM Pharmaceuticals might present Ampligen research to a medical conference in October. Thanks to Neenyah Ostrom of the New York Native for alerting us to this information.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>4. May 12 organization begins early preparations Mr. Tom Hennessey, the originator of the annual CFS/CFIDS/ME International Awareness Day held on May 12, has founded a charitable organization for promoting the Awareness Day, and he is now asking for advice on how to proceed with promoting and preparing for the May 12 Awareness Day for 1994. CFS leader Tom Hennessey had first called for a CFS awareness day earlier this year, to observed around the world on May 12, the birth date of pioneering nurse Florence Nightingale who for a time had a debilitating CFS-like illness. Mr. Hennessey has now formed an organization named RESCIND, which is an abbreviation for Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases. The group can be reached in Connecticut USA at the following postal address: RESCIND, Inc. 253 Byram Shore Road Greenwich, CT 06830 USA Monetary contributions are very welcome and are tax-deductible. Tom Hennessey is now posing the following questions to those who might help with the 1994 Awareness Day: (1) Which activities that were tried last May 12 seemed to work best? (2) What would you like to try, or what would you recommend that others try, for next year? Some of the ideas suggested last year were: "REST-IN" demonstrations in front of the Seats of Government; "PHONE-IN" campaigns to government officials; contacting the local & national press; setting up information booths in public areas. Please send suggestions and ideas to the above address. News on the development of this campaign will continue to be featured in CFS-NEWS. [Information provided by Tom Hennessey of RESCIND.] =================================================================== 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.GO 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. ===================================================================== ******************************************************************************