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            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 <your> <name> 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.
=====================================================================



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