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            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.



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 <your> <name> 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,
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=====================================================================

                                                               
