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. 41 November 30, 1994 Washington DC -------------------------------------------------------------------- FLORIDA: FURTHER REPORT / IFMEA MEDICAL UPDATE CONTENTS >>>1. Report on clinical sessions of Florida conference >>>2. I.F.M.E.A. Medical Update >>>3. Twins study expands >>>4. Networking News ------------------------------------------------------------------- >>>1. Report on clinical sessions of Florida conference CFS-NEWS number 40 reported on the Florida CFS medical conference and emphasized what occurred at the research sessions. This article gives a report emphasizing the clinical sessions. Corrections In the previous edition's report there were two errors of fact. Regarding the speakers bureau for the AACFS (American Association for Chronic Fatigue Syndrome), the arrangement regarding speakers fees is that the fees that are received will be donated by the speaker to the AACFS. Also, the proceedings of only the clinical sessions will be published in the Journal of Chronic Fatigue Syndrome, whereas the proceedings for the research sessions will appear in another peer-reviewed journal. Treatments No treatments that were completely new were presented at the conference. Some additional light was shed on known treatments, and some methods of therapy were given more attention than they had received at other recent conferences. WARNING: General treatments discussed at the conference are reported in this article. Many of these treatments are inappropriate in many cases and might be harmful. The treatment reports that appear here should not be used as medical advice. It is imperative that anyone who has or thinks they have CFS should seek treatment from a licensed health care practitioner who is familiar with the illness. Also, in many instances the conference sessions did not have sufficient time to have a full discussion of all issues, therefore important disadvantages of various treatments may not have been fully explored. "Doctor to Doctor" In a session called "Doctor to Doctor", Drs. Nancy Klimas and Jonathan Rest led a general discussion among physician participants. Some common problems of CFS management that were discussed included collegial acceptance of the illness, and time consuming paperwork. Other points that were made included the need to make a diagnosis as being quite important for validation for the patient. This is important also for the patient's employer, for health insurance, for the family, and is particularly important for pediatric cases. Treatments that are typically used can be helpful in managing the sleep cycle, allergies, secondary infections, pain, fatigue, cognitive dysfunction, etc. From the physicians' point of view, it seems that a small number of CFS cases take up a larger portion of the physician's time, prompting stresses for the clinicians themselves. To some degree, managing CFS cases can be become volunteer work for the physician. Regarding treatments, Dr. Klimas recommended against multiple prescriptions for nervous system complaints, particularly the benzodiazepines such as klonopin. Klimas also said it was important to distinguish between those patients who are depressed and those who aren't. Klimas took an informal poll of the physicians present to see what methods of treatment they used for CFS management. [See also the physicians survey reported by Jonathan Rest in the "Alternative Therapies" section below.] Widely used treatments included SSRIs ("selective serotonin re-uptake inhibitors" such as Zoloft, Praxil and Prozac), low dose TCAs ("tricyclic anti-depressants" such as doxepin and amitriptyline), and NSAIDs ("non-steroidal anti- inflammatory drugs" such as ibuprofen and naproxen). SSRIs were the treatment of first choice, often followed by Wellbutrin. Virtually no physicians prescribed depression-level dosages of TCAs (but rather low dosages). Also, very few practitioners referred their patients to psychiatrists on a routine basis for treatment of depression, but rather most applied depression pharmacology directly to their patients. Other treatments used less often included intra-muscular gamma globulin, kutapressin, interferon, and intravenous gamma globulin. For specific symptoms, various treatments were discussed. Regarding fatigue, Dr. Mark Loveless recommended that various behavior modifications are quite important. A program of calorie management and predictable activities should be developed, which will have beneficial effects for the patient and the family as well. The importance of re-establishing a normal sleep pattern was discussed. Other comments included the usefulness of nutrition therapy, particularly B12 and magnesium, and hypnosis. Regarding sleep, there was a discussion of behavior modification again, in addition to comments on typical prescriptions of low-dose TCAs, avoidance of caffeine, and use of valerian root tea. Regarding pain management there were comments on the use of lidocaine gel, topical salicylates, acupuncture and acupressure, and nutrition therapy (high dose B vitamins, particularly B12, and iron and magnesium). Dr. Charles Lapp mentioned that for many patients hot baths often gave short term relief but made symptoms worse later. There was a wide discussion on the advantages and disadvantages of using narcotics for CFS pain management. There was a similar broad discussion on the pluses and minuses of using klonopin. Again, please note the physicians survey on treatments reported in the "Alternative Therapies" section below. "Ask the Experts" In a session called "Ask the Experts", a panel of physicians experienced in CFS management fielded questions from the audience. The panel was chaired by Dr. Anthony Komaroff and included Doctors Paul Cheney, Nancy Klimas, David Bell, Mark Loveless and James Jones. Dr. David Bell described the tragedy of children with CFIDS who may develop "identity confusion" while growing up, being unsure about the boundary between their personal abilities and the limits imposed by the illness. Bell was also asked to comment on an optimal cost- effective diagnostic work-up for insurance purposes. He said that a clinical work-up should be sufficient, and that other low-cost lab tests might include a sed rate, a complete blood count, baseline thyroid screen, and routine chemistries for liver function -- unless the clinical exam suggested other illnesses besides CFS should be considered. Bell said that others might argue for regularly testing for hepatitis, HIV, etc. On the other hand, Dr. James Jones stated that it has not been shown that a minimal work-up is adequate, and that in particular it will be important to consider tests for various auto-immune diseases, kidney disease, and others. For general treatment, Dr. Nancy Klimas recommended lifestyle changes, behavior modification and graduated exercise. She emphasized that these programs were underrated and yet quite important among available CFIDS treatments. Dr. Mark Loveless was asked whether CFS is contagious. He said there is no evidence to support that. Even though there are cases that exhibit infectious onset, that does not imply that there definitely is an infectious agent. Familial transfer seems unlikely, although this remains unproven. Dr. Loveless recommended that it would be prudent for CFS patients to refrain from donating blood. Dr. Klimas was asked whether CFS patients have an increased risk of getting cancer. She said that this is not known, and that we need longitudinal studies to address this question. The fact that there is NK cell dysfunction does give concern about this issue. There needs to be studies to measure health outcome issues generally for all auto-immune related illnesses. Klimas was also asked about endometriosis in CFS patients and she replied the observes this anecdotally. Dr. Komaroff commented that a formal study of his shows preliminary results that confirms this. Dr. Paul Cheney was asked about the general effectiveness of known CFIDS treatments and said that those who were moderately ill often responded better than those were more seriously ill. For central nervous system problems, Cheney recommended klonopin, calcium channel blockers, and magnesium. He also commented on the general therapeutic effects of hydrotherapy. Cheney was also asked about the value of intravenous gamma globulin (IVgG). He said that in his experience some patients have been helped by IVgG although these treatments are expensive and are usually not reimbursable by insurance. Cheney also said that intramuscular gammaglobulin (IMgG) is generally even less useful, except for those with recurrent infections of the upper respiratory system. Dr. James Jones commented that he often found in his region (Colorado) that many who reported CFIDS-like symptoms responded very well to sinusitus treatment, specifically a saline nasal wash. When the full panel was asked about the advisability of flu shots for CFIDS patients, three were in favor and two recommended against. "Alternative Therapies" Dr. Paul Levine moderated a panel on "Alternative Therapies". Dr. Howard Berman of the NIH Office of Alternative Medicine spoke about a recent study which showed a high of alternative therapies by patients in the USA. Dr. Wayne Jonas of Walter Reed Army Hospital discussed the difficulties in measuring the effectiveness of alternative therapies in those disciplines that don't typically make trials using scientific controls. Dr. John Renner of the Consumer Health Institute in Kansas City discussed the distinctions between folklore, quackery, unproven therapies and investigational therapies, and he recommended for those interested in herbalism that people read "The New Honest Herbal" by Tyler. Dr. Jonathan Rest presented a formal survey of physicians on what CFS treatments are commonly in use. The 16 respondents reported that common prescriptions were: selected serotonin re-uptake inhibitors (SSRIs, including Zoloft, Praxil and Prozac) used for fatigue, cognitive dysfunction and depression; tricyclic anti-depressants (TCAs, such as doxepin, amitriptyline) for sleep disorder, and muscle and joint pain; non-steroidal anti-inflammatory drugs (NSAIDs, such as ibuprofen and naproxen) for headache, and muscle and joint pain. Other treatments often prescribed were Klonopin, IMgG, nutritional supplements (particularly anti-oxidants, B-vitamins generally and B-12 specifically), herbs, and acupuncture. Less often prescribed were chiropractic therapy, IVgG, kutapressin, antivirals, interferon, and transfer factor. -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>2. I.F.M.E.A. Medical Update [CFS-NEWS regularly publishes lists of CFS medical citations from both I.F.M.E.A. and from the University of California at Irvine Science Library. The items shown in these lists will often overlap.] 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. Special notice: I.F.M.E.A. is experiencing financial difficulties and is planning on closing down most of its functions in the coming year. The March 1995 Update is scheduled to be the last edition for the indefinite future. The following is a list of the publications which are summarized and reviewed in the most recent edition of the Update: IFMEA MEDICAL UPDATE Volume 6, number 3 1st September 1994 IMMUNOLOGY/VIROLOGY Natelson, BH., Ye, N., Moul, DE., Jenkins, FJ., Oren, DA., Tapp, WN and Cheng, Y-C. High titres of anti-Epstein-Barr virus DNA polymerase are found in patients with severe fatiguing illness. Journal of Medical Virology, 1994, 42, 1, 42-46. NEUROLOGY\NUCLEAR MEDICINE Costa, DC., Gacinovic, S., Tannock, C and Brostoff, J. Brain stem SPET studies in normals, M.E./CFS and depression. Nuclear Medicine Communications, 1994, 15, 252-253. Natelson, BH., Cohen, JM., Brassloff, I and Lee, H-J. A controlled study of brain magnetic resonance imaging in patients with the chronic fatigue syndrome. Journal of the Neurological Sciences, 1993, 120, 2, 213-7. Schwartz, RB., Garada, BM., Komaroff, AL., Tice, HM., Gleit, M., Jolesz, FA and Holman, BL. Detection of intracranial abnormalities in patients with chronic fatigue syndrome: comparison of MR imaging and SPECT. American Journal of Roentgenology, 1994, 162, 4, 935-941. Schwartz, RB., Komaroff, AL., Garada, BM., Gleit, M., Doolittle, TH., Bates, DW., Vasile, RG and Holman, BL. SPECT imaging of the brain: comparison of findings in patients with chronic fatigue syndrome, AIDS dementia complex and major unipolar depression. American Journal of Roentgenology, 1994, 162, 4, 943-951. REVIEWS Wilson, A., Hickie, I., Lloyd, A and Wakefield, D. The treatment of chronic fatigue syndrome: science and speculation. American Journal of Medicine, 1994, 96, 544-550. MISCELLANEOUS Ambrogetti, A and Olsen, LG. Consideration of narcolepsy in the differential diagnosis of chronic fatigue syndrome. Medical Journal of Australia, 1994, 160, 426-429. Bonner, D., Ron, M., Chalder, T., Butler, S and Wessely, S. Chronic fatigue syndrome: a follow up study. Journal of Neurology, Neurosurgery, and Psychiatry, 1994, 57, 617-621. Deale, A and David, AS. Chronic fatigue syndrome: evaluation and management. Journal of Neuropsychiatry and Clinical Neurosciences, 1994, 6, 2, 189-194. Downey, DC. Fatigue syndromes revisited: the possible role of porphyrins. Medical Hypotheses, 1994, 42, 5, 285-290. Hauben, M. Quinacrine and chronic fatigue syndrome. American Family Physician, 1994, 49, 6, 1354. Hickie, I and Wilson, A. A catecholamine model of fatigue. British Journal of Psychiatry, 1994, 165, 275-276. Jason, LA and Taylor, SL. Monitoring chronic fatigue syndrome. Journal of Nervous and Mental Disease, 1994, 182, 243-244. Jason, LA., Taylor, SL., Johnson, S., Goldston, SE., Salina, D., Bishop, P and Wagner, L. Prevalence of chronic fatigue syndrome-related symptoms among nurses. Evaluation and the Health Professions, 1993, 16, 4, 385-399. Khoury, PB. Chronic fatigue syndrome (CFS) and psychiatric disorders. American Journal of Medicine, 1994, 94, 485-6. Langsjoen, PH., Langsjoen, PH and Folkers, K. Isolated diastolic dysfunction of the myocardium and its response to CoQ10 treatment. Clinical Investigator, 1993, 71, S140-S144. Lane, RJM., Woodrow, D and Archard, LC. Lactate responses to exercise in chronic fatigue syndrome. Journal of Neurology, Neurosurgery and Psychiatry, 1994, 57, 5, 662-3. Lawrie, SM and Pelosi, AJ. Chronic fatigue syndrome and myalgic encephalomyelitis. British Medical Journal, 1994, 309, 275. Maffulli, N., Testa, V and Capasso, G. Post-viral fatigue syndrome. A longitudinal assessment in varsity athletes. Journal of Sports Medicine and Physical Fitness, 1993, 33, 4, 392-399. Martensen, RL. Was neurasthenia a `legitimate morbid entity'? Journal of the American Medical Association, 1994, 271, 16, 1243. McGarry, F., Gow, J and Behan, PO. Enterovirus in the chronic fatigue syndrome. Annals of Internal Medicine, 1994, 120, 11, 972-973. Meyers, D. Psychosocial factors and somatisation in chronic fatigue and allied disorders. Medical Journal of Australia, 1994, 160, 12, 806-7. Richman, JA., Flaherty, JA and Rospenda, KM. Chronic fatigue syndrome: have flawed assumptions been derived from treatment-based studies? American Journal of Public Health, 1994, 84, 2, 282-284. Roberts, L and Byrne, E. Single fibre EMG studies in chronic fatigue syndrome: a reappraisal. Journal of Neurology, Neuro-surgery, and Psychiatry, 1994, 57, 375-376. Rosen, SD. Hyperventilation and the chronic fatigue syndrome. Quarterly Journal of Medicine, 1994, 87, 6, 373-374. Zubieta, JK., Engleberg, NC., Yargic, LI., Pande, AC and Demitrack, MA. Seasonal symptom variation in patients with chronic fatigue: comparison with major mood disorders. Journal of Psychiatric Research, 1994, 28, 1, 13-22. RECOMMENDED Unpublished article recommended by a member of our medical advisory board: Hyde, B., Cameron, B., Duncker, A., Hall, D., McRobbie, J and Wall, L. Epidemiological aspects of myalgic encephalomyelitis/chronic fatigue syndrome/postviral fatigue syndrome. Report available from the Nightingale Research Foundation, 383 Danforth Avenue, Ottawa, Ontario, K2A OE1. RESEARCH ON CHRONIC FATIGUE. Manu, P., Lane, TJ., Matthews, DA., Castriotta, RJ., Watson, RK and Abeles, M. Alpha-delta sleep in patients with a chief complaint of chronic fatigue. Southern Medical Journal, 1994, 87, 4, 465-470. Wood, GC., Bentall, RP., Gopfert, M., Dewey, ME and Edwards, RHT. The differential response of chronic fatigue, neurotic and muscular dystrophy patients to experimental psychological stress. Psychological Medicine, 1994, 24, 357-364. RESEARCH ON OTHER DISORDERS. úÿ Craig, AR., Hancock, KM and Dickson, HG. Spinal cord injury: a search for determinants of depression two years after the event. British Journal of Clinical Psychology, 1994, 33, 221-230. Cope, H., David, A and Mann, A. `Maybe it's a virus': beliefs about viruses, symptom attributional style and psychological health. Journal of Psychosomatic Research, 1994, 38, 2, 89-98. Cunningham, AJ., Lockwood, GA and Edmonds, CV. Which cancer patients benefit most from a brief, group, coping skills program? International Journal of Psychiatry in Medicine, 1993, 23, 383-398. Devlen, J. Anxiety and depression in migraine. Journal of the Royal Society of Medicine, 1994, 87, 338-341. Martinsen, EW. Physical activity and depression: clinical experience. Acta Psychiatrica Scandinavica, 1994, 377, 23-27. Paradis, CM., Friedman, S., Lazar, RM and Kula, RW. Anxiety dis-orders in a neuromuscular clinic. American Journal of Psychiatry, 1993, 150, 7, 1102-1104. Sullivan, M., Katon, W., Russo, J., Dobie, R and Sakai, C. Coping and marital support as correlates of tinnitus disability. General Hospital Psychiatry, 1994, 16, 259-266. Woodall, CJ., Riding, MH., Graham, DI and Clements, GB. Sequences specific for enterovirus detected in spinal cord from patients with motor neurone disease. British Medical Journal, 1994, 308, 1541-1543. CFS IN BOOKS. Illis, LS. (Ed.) Neurological Rehabilitation. Second Edition. Oxford: Blackwell Scientific Publications. 1994. Hb. 581pp. 69.50 pounds. ------------------------------------------------------- This Update was compiled by IFMEA's Information Unit with help from Dr. EM Goudsmit, Dr. A. Macintyre, Dr. C. Shepherd, Ms. M. Gallacher RN, Mr. Guido Toro, Mr. David Axford, Ms. Kate Gardner 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: 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 Dr. Ellen Goudsmit and David Axford.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>3. Twins study expands A CFS research study of twins, previously announced in CFS-NEWS, is expanding its scope. The office of Dr. Dedra Buchwald, M.D. at the University of Washington, School of Medicine is developing a registry of fraternal and identical twins. The registry is seeking twins where one or both of the twins have CFS or FM (fibromyalgia). The registry will be used to plan future studies of possible genetic and environmental differences between twins. Study areas of interest include immunological, virological, psychological, and sleep-related disturbances in CFS and FM. If you know of such a twin (or are yourself a twin) with CFS or FM, please feel free to contact Dr. Buchwald's office by any of the following means: Postal mail: Dedra Buchwald, MD Harborview Medical Center 325 9th Avenue ZA-60 Seattle, WA 98104 Telephone: 1-206-223-3185 Ask for research assistant Hayes Lavis, or leave a message including your name, address, and a phone number. Please state that you are calling about the "twin study". Internet e-mail: hayes@u.washington.edu Currently, Dr. Buchwald is in the process of collecting names for the registry. The registry has over 65 pairs of twins on file. Several studies are planned, but their feasibility depends on the number of twins with CFS and FM enrolled in the registry. [Information provided by Dr. Buchwald and Hayes Lavis. Thanks to Beth Huneycutt for assistance.] -=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=- >>>4. Networking News Several BBSs that have carried CFS information have closed down this year, or have announced plans to do so. John Kossowan's CFIDS/CFS BBS in Augusta, Maine has closed, which was the world's first CFS- oriented BBS. The MEDBASE BBS of Tucson, Arizona is shutting down. It's operator, Ms. Molly Holzschlag, continues to run the CFS-FILE database on Internet as well as publish the monthly Catharsis magazine. The Wellspring BBS of Irvine, California is closing, its files likely to be transferred to an Internet site. And the MEgahertz BBS in London has closed. Other BBSs that continue to provide CFS information are as follows: Smithtown, New York 1-516-736-6810 Los Angeles, California 1-213-766-1356 Cross Lanes, West Virginia 1-304-759-0727 Kansas City, Kansas 1-913-642-7907 Fleet, Britain 44-252-626233 Apeldoorn, Netherlands 31-55-337951 =================================================================== 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 23, 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. All trademarks, both marked and not marked, are the property of their respective owners. =================================================================== 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@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@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, directory cfs-news. =====================================================================