# 65 Immune responses differ in sub-groups / May 12 Awareness Day
CFS-NEWS Electronic Newsletter
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. 65 May 4, 1997 Washington DC
--------------------------------------------------------------------
IMMUNE RESPONSES DIFFER IN CFS SUB-GROUPS /
AWARENESS DAY IS MONDAY, MAY 12
CONTENTS
>>>1. Immune responses differ in sub-groups of CFS patients
>>>2. Awareness Day activities for May 12
>>>3. A 30-symptom test for CFS
>>>4. Tests of 13 viruses found none for CF and CFS
>>>5. Decreased muscle activity found in CFS and depressed patients
in NIH study
>>>6. Registry for physicians with CFS/CF/FM, and renewed call for
twins study
>>>7. Teitelbaum research trial
>>>8. M.E. and CFS Medical Update
>>>9. U.S. Government committee, and Change the Name issue
[NOTE: The Internet address of the CFS-NEWS Electronic Newsletter=20
has changed. The new address for sending email to the editor is=20
CFS-...@MAELSTROM.STJOHNS.EDU. The new address for subscribing /=20
unsubscribing is LIST...@MAELSTROM.STJOHNS.EDU. Please make a note=20
of this for your future reference. -- Editor ]
-------------------------------------------------------------------
>>>1. Immune responses differ in sub-groups of CFS patients
[Thanks to the Melvin Ramsay Society, and to Steve Clancy of the UCI=20
Science Library, for assistance with this report and others which=20
appear below. -- Editor.]
Researchers at the U.S. Centers for Disease Control and Prevention=20
(CDC) have found that some immune responses differ among CFS patients=20
depending on whether the patients experienced sudden or gradual onset=20
of the illness, and on how severe their illness was on the day that=20
they were tested. However, when these distinctions were not made=20
these same measures indicated no differences between the total=20
patient group and healthy controls.
Dr. Alison Mawle et al. of the CDC set out to study a number of=20
immune responses which had shown differing results in various studies=20
by other researchers. In their trial, the CDC researchers compared=20
26 CFS patients with 50 matched controls. According to the paper's=20
abstract, when studying the group as a whole "no differences were=20
found in white blood cell numbers; immune complex, complement, or=20
serum immunoglobulin levels; delayed type hypersensitivity and=20
allergic responses; NK cell function; and proliferative responses to=20
mitogens and antigens. Marginal differences were detected in cytokine=20
responses and in cell surface markers in the total CFS population."
In the concluding paragraph of their paper, the researchers state:
In summary, we could not confirm the findings of immune
differences between CFS cases and controls when we assessed our
total population. However, when we broke down the population by
type of disease onset, we detected subtle immune immunologic
differences. The patients with sudden onset had a cytokine and
cell surface marker profile reminiscent of that seen in acute
infection. By contrast, the differences seen in persons with
gradual onset were similar to those reported by several other
groups. This exploratory study suggests that disease onset might
be an important factor to consider when selecting CFS cases for
study and should be used for stratification in analysis of data
sets. This approach may help explain differing results seen in
different research centers.
Some distinctions were also found when patients were grouped by=20
illness severity on the day of testing, and fewer distinctions were=20
found when grouped by the length of illness.
The researchers also wrote that "the numbers in this study are small,=20
which limits its power to detect differences. Thus, it is all the=20
more striking that when the cases were subgrouped, giving even=20
smaller numbers, that differences were seen ...". They go on to=20
recommend that a second study be undertaken to confirm these results.
The literature citation for this paper is as follows:
Mawle AC; Nisenbaum R; Dobbins JG; Gary HE Jr; Stewart JA; Reyes
M; Steele L; Schmid DS; Reeves WC. Immune responses associated
with chronic fatigue syndrome: a case-control study. Journal of
Infectious Diseases, 1997 Jan, 175(1):136-41.
-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=
=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-
>>>2. Awareness Day activities for May 12
Patients and advocacy groups around the world are promoting May 12=20
Awareness Day for CFS by educating government officials, the media=20
and doctors groups about the illness. For those who are unable to=20
write their own letters, it is suggested that they ask a family=20
member or a friend to write letters for them.
For information about what to do to promote CFS awareness, go to the=20
web page at
http://www.cais.net/cfs-news/action.htm#MAY12
or obtain similar information via e-mail by sending a message which=20
says
GET CFS MAY12TXT
to address LIST...@MAELSTROM.STJOHNS.EDU. Also, note the=20
information which follows.
------------------------------------------------------
CFIDS Association of America
The CFIDS Association of America is asking people with CFS to write=20
their Congressional representatives to ask for increased funding for=20
medical research. Association volunteers will also lobby elected=20
officials in person in Washington during that week. Here is some=20
advice form the Association about contacting the U.S. Congress:
* * * * * * * * *
To all C-ACT members from The CFIDS Association of America, April 28,=20
1997, re CFIDS/CFS/M.E. Awareness Day, May 12, 1997
What Can I Do?
Make your government representatives aware. If you don't know who=20
they are or how to contact them, request the information from your=20
local voter registration office (you can find the number in your=20
phone book) or the Capitol switchboard at 202/224-3121.
* Write a letter. A suggested letter is included below. Use it as is=20
or personalize it with your own information. We have been advised=20
that original letters have more impact than pre-printed form letters.
Incorporate the enclosed suggested legislation language into your=20
letter or include the sheet as an enclosure with your letter. C-ACT=20
Note: One letter to an elected official represents 400 others that
support your issue.
* If writing is difficult, ask someone to write the letter for you or
dictate a letter that you can then sign.
* Try to mail your letters now or at least by May 8, 1997.
* Make a phone call. Call the office of your U.S. Senators or
Representative and ask to speak to the Legislative Aide. Ask that=20
your Senators or Representative support increased funding for CFIDS=20
research. C-ACT Note: One phone call to an elected official=20
represents 150 others that support your issue.
Suggested Letter:
(For Senators)
The Honorable [Full Name]
United States Senate
Washington, DC 20510
(OR for Representatives)
The Honorable [Full Name]
U.S. House of Representatives
Washington, DC 20515
Dear Senator [Last Name]: (OR Dear Representative [Last Name]:
I ask that you recognize the designation of May 12, 1997 as
International CFIDS Awareness Day. I, along with hundreds of=20
thousands of other Americans, have chronic fatigue and immune=20
dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome=20
(CFS). CFIDS is a devastating illness. Scientists have learned that=20
it affects the immune system, the endocrine system and the brain, but=20
its cause remains unknown and no cure has been found.
I can no longer work due to the pain and cognitive problems
resulting from CFIDS. Please help continue the search for answers=20
that will help me and others with CFIDS become productive citizens=20
once again. Please support the requests of The CFIDS Association of=20
America.
Sincerely,
[Sign your name and include your address.]
[Enclose the suggested legislation language.]
Suggested Telephone Call Script:
Hello. My name is [Your Name] and I live in [City, State]. I have=20
chronic fatigue and immune dysfunction syndrome (CFIDS) and I'm=20
calling because today is International CFIDS Awareness Day. Currently=20
the cause of CFIDS is unknown and there is no cure. I request that=20
Mr./Ms. [Name of Senator or Representative] help to change this by=20
supporting increased funding for CFIDS research. Thank you for=20
sharing this message with [him or her].
Please support legislation that will increase attention to and the
level of money spent on the study of CFIDS by our national public=20
health agencies, specifically:
* Reauthorization of the National Institutes of Health to continue=20
its critical support for CFIDS research;
* Direction to the Social Security Administration to identify and=20
correct barriers to disability benefits that exist for persons with=20
CFIDS;
* An increase of $10 million at the National Institutes of Health,=20
most of which would be directed to extramural grants focused on=20
promising areas of biomedical research into CFIDS; and
* An increase of $5 million at the Centers for Disease Control to=20
expand surveillance projects concerning CFIDS.
------------------------------------------------------
=20
Rally in Washington, D.C.
USA patients are organizing a rally to take place in Washington, DC=20
on Monday, May 12, to be held at 12:00 noon on the steps of the=20
Capitol building (on the west side of the building, facing the Mall=20
and the Washington Monument). All patients are urged to participate=20
if they are able.
Support groups are asked to bring a visual display that represents=20
your group such as a poster, a banner, or a wreath. Your display=20
might include each of your members' names, age, year they contracted=20
CFS, and possibly other personal information (ethnicity, professional=20
affiliation, etc.).
Individuals who attend are also asked to bring with them some item=20
which represents what they have lost in their former healthy life,=20
which will be donated in a visual demonstration at the rally.
For information about transportation to Washington, lodging,=20
wheelchairs, updated rally events, or if you can volunteer to help,=20
contact Charla Young at e-mail address HYoun...@aol.com. The rally=20
is being organized jointly by Charla Young, who runs an on-line=20
support group on an American commercial Internet service, and the=20
WECAN group.
------------------------------------------------------
R.E.S.C.I.N.D.
The RESCIND group, headed by Tom Hennessy who originated May 12=20
Awareness Day, is promoting May 12 to also represent fibromyalgia,=20
Gulf War illness, and multiple chemical sensitivity, in addition to=20
M.E./CFS. R.E.S.C.I.N.D. is an acronym which stands for Repeal=20
Existing Stereotypes of Chronic, Immunologic and Neurologic Diseases.
Tom Hennessy has issued the following statement on behalf of RESCIND:
* * * * * * * * *
From=20October of 1992 we decided to incorporate the RESCIND=20
organization to promote one day each year where those are afflicted=20
with these four interrelated conditions could come together for one=20
common goal. We believed then in the concept of "Different insult,=20
same result".
We picked a spring day because that is when the Congress decides on=20
its appropriations for the next year. We wanted one consistent day=20
each year to promote awareness. Florence Nightingale was the best=20
symbol of these conditions. She inspired the founding of the=20
International Red Cross. She helped veterans of Crimean War.
She fought for better nutrition and sanitation. Her name was=20
recognized in a positive light throughout the world. In our first=20
year, 1993, we mailed Awareness Day packets to about 30 foreign=20
countries.
We feel there has been a major a breakthrough this year when the=20
conservative Journal of the American Medical Association (JAMA)=20
published four peer-reviewed articles in their Jan. 15 1997 edition,=20
the first sentence of which stated "Five years after the Persian Gulf=20
War, an estimated 5000 to 80 000 of the approximately 700 000 Gulf=20
War veterans remain ill with vague symptoms that resemble chronic=20
fatigue syndrome, but defy diagnosis". We've said this all along. =20
This is the most in-depth study yet published, and it states that=20
there might be up to 6 syndromes that resemble fibromyalgia, multiple=20
chemical sensitivity, and CFS.
One of the problems we have faced with Gulf War syndrome is the fact=20
that many scientists and researchers did not take M.E./CFS seriously. =20
Now that the most prestigious American medical journal backs up what=20
we have claimed for six years, we feel vindicated in recommending=20
that leaders from these various groups unite at least once a year to=20
promote May 12 as Awareness Day. This year we have documented more=20
than 96,000 mailers, posters, faxes, letters, and e-mails that have=20
been sent out by at least a dozen national and international advocacy=20
organizations to all corners of the globe. We have reports of myriad=20
ways of observing May 12, from simple letters including a photo and a=20
voter registration card, to organized fax, phone and e-mail trees,=20
with letters signed by each member of the various groups.
Some of the groups who are planning to attend the rally in Washington=20
on May 12 have constructed cardboard trees with the names of their=20
members on the various branches and leaves. Other have organized=20
tables at their local libraries featuring books, videos, newsletters=20
and fact sheets to educate members of their local communities. Other=20
groups such as "SHARE, CARE and PRAYER, Inc." (an MCSS group with a=20
spiritual viewpoint) have mailed more than 1,100 cards to various=20
churches and synagogues asking for their parishioners to join in "a=20
circle of prayer on Awareness Day" on Monday, May 12.
The Fibromyalgia Network has filled more than 3,000 requests for=20
their 3-color, glossy May 12 posters, and they have agreed to print=20
5,000 more for next year.
Please do whatever you are able to to promote awareness on Monday,=20
May 12. And visit our web page for further information at=20
http://www.geocities.com/CapitolHill/4277 .
-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=
=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-
>>>3. A 30-symptom test for CFS
Dr. Arnold Hilgers MD, and Johannes Frank, of Dusseldorf, Germany=20
have developed a 30-criteria test for CFS, which they have tested and=20
applied against various immune responses in a large patient trial.
These researchers tested a list of 45 symptoms in a comparison of 385=20
CFS patients to 53 healthy controls. They chose the 30 most=20
significant symptoms to be included their test (although 40 symptoms=20
were significant in distinguishing patients from controls). Thirteen=20
of the symptoms appeared in the 1994 CDC criteria. The other 17=20
were: respiratory infections, palpitations, dizziness, dyspepsia,=20
dryness of mouth/eyes, allergies, nausea, paraesthesia, loss of hair,=20
skin alterations, dyscoordination, chest pain, personality changes,=20
eczema, general infections, twitches, and urogenital infections.
When this test was applied to a group of 472 patients suspected of=20
having CFS (including the 385 patients who matched the CDC=20
definition), several significant correlations were found to various=20
immune markers.
The citation for this paper is as follows:
Hilgers, A and Frank, J. Chronic fatigue syndrome: evaluation of
a 30-criteria-score and correlation with immune activation.
Journal of Chronic Fatigue Syndrome, 1996 2(4):35-47.
-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=
=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-
>>>4. Tests of 13 viruses found none for CF and CFS
Dr. Dedra Buchwald et al. tested 548 chronic fatigue (CF) patients=20
for 13 viruses and found no significant correlations. Fifty-eight=20
percent of these patients had CFS. The 13 viruses were: herpes=20
simplex virus 1 and 2, rubella, adenovirus, human herpesvirus 6,=20
Epstein-Barr virus, cytomegalovirus, and Cox-Sackie B virus types 1=20
through 6. The researchers concluded that "Our findings argue=20
against the presence of a chronic infection but do not conclusively=20
rule out a a role for any of the viruses studied as etiologic agents=20
or triggering events.... Although potentially helpful in evaluating=20
individuals with signs, symptoms or histories strongly suggestive of=20
a specific virus, based on our findings, we do not recommend=20
routinely obtaining the viral serologic tests evaluated in this=20
investigation in chronically fatigued patients" or for those who have=20
CFS.
The citation for this paper is as follows:
Buchwald, D., Ashley, RL., Pearlman, T., Kith, P and Komaroff,
AL. Viral serologies in patients with chronic fatigue syndrome.
Journal of Medical Virology, 1996 Sep, 50(1):25-30.
-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=
=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-
>>>5. Decreased muscle activity found in CFS and depressed patients
in NIH study
NIH scientists have found decreased muscle activity in both CFS and=20
depressed patients. Postexercise motor evoked potentials were found=20
lower in 10 depressed patients, and lower still in 12 CFS patients,=20
when compared to 18 healthy and sedentary controls. The researchers=20
recommend further study of this issue.
The citation for this paper is as follows:
Samii A; Wassermann EM; Ikoma K; Mercuri B; George MS; O'Fallon=20
A; Dale JK; Straus SE; Hallett M. Decreased postexercise=20
facilitation of motor evoked potentials in patients with chronic=20
fatigue syndrome or depression. Neurology, 1996 Dec,
47(6):1410-4.
-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=
=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-
>>>6. Registry for physicians with CFS/CF/FM, and renewed call for
twins study
The following is an announcement about a new project, followed a=20
renewed call for participants in an on-going project, both based at=20
the University of Washington.
Registry for physicians with CFS/CF/FM
Drs. Michael McGoodwin and Dedra Buchwald of the University of
Washington are developing a registry of physicians with Chronic=20
Fatigue Syndrome (CFS), Chronic Fatigue (CF), and Fibromyalgia (FM).=20
Dr. Buchwald directs the University of Washington Chronic Fatigue=20
Clinic at Harborview Medical Center, Seattle, Washington and is the=20
Director of one of two NIH-funded Chronic Fatigue Syndrome=20
Cooperative Research Centers in the United States. She is the=20
current President of the American Association for Chronic Fatigue=20
Syndrome. Dr. McGoodwin is a physician with CFS/FM, formerly in the=20
active clinical practice of diagnostic radiology and nuclear medicine=20
and interested in contributing to the understanding and therapy of=20
CF, CFS, FM, and related conditions.
We wish to explore the feasibility and potential benefits to patients
and health care professionals of compiling a registry of physicians=20
with CFS, CF, or FM. Eligible participants would be M.D.'s, D.O.'s,=20
or the international equivalent thereof in education. Physicians with
suggestive symptoms but who have never been evaluated would also be
welcome. We believe that the study of physicians with CFS, CF, or FM
could have high potential value for the benefit of all persons=20
suffering from or involved in the care of patients with these=20
illnesses.
Potential uses of this registry might include the following:
(1) Estimating the incidence of CFS, CF, and FM in physicians (2)
Compiling authoritative and instructive case histories of credible=20
and reputable physician patients with CFS, CF, or FM for the=20
enlightenment of other health care providers, patients, family=20
members of patients, the insurance industry, policy makers, and=20
others involved in the care of patients with these disorders (3)=20
Comparing information collected from unaffected physicians with=20
affected physicians regarding their history, background, exposures,=20
signs and symptoms, laboratory test results, responses to therapies,=20
psychosocial and functional status, etc. (4) Examining the=20
relationships among CFS, CF, and FM and seemingly related disorders=20
such as Sjogren's Syndrome, other autoimmune disorders, depression,=20
etc. (5) Compiling a list of individuals who might wish to increase=20
their participation in CFS, CF, and FM research or patient advocacy
The first phase of our project would be to determine how many=20
physicians would be interested in participating in such a registry.=20
Provided a sufficient number of participants are identified, in the=20
second phase we would ask individuals to complete a detailed=20
Physician Registry Booklet. This booklet would include information=20
on the fatiguing illness, other symptoms, past medical history, and=20
measures of functional level, support, stress, and distress.
All participation would be strictly voluntary and all participants=20
would be self-referred. All information would be strictly=20
confidential and no material regarding an individual participant that=20
might potentially allow the identification or contacting of that=20
person would be released without his or her consent. Even if you send=20
in the information requested on the initial form, you will not be=20
obligated to respond to further requests should you then wish to=20
decline.
Potentially interested participants may view a more detailed=20
description of the proposed project at the World Wide Web page=20
located at
http://weber.u.washington.edu/~dedra/physwcfs.html
or send an e-mail message which says GET CFS PHYSWCFS to address=20
LIST...@MAELSTROM.STJOHNS.EDU .
If you are potentially interested in participating, or for more
information, please contact the individuals listed below. (If you
are a physician caring for such physician-patients, please advise=20
them of this project and suggest to them they consider contacting=20
us.)
Nicolette Vajtay or Suzanne Hartman
Research Assistants, Physicians with CFS/CF/FM Registry
Harborview Medical Center
325 9th Avenue, Box 359780
Seattle, WA 98104
Phone (Voice): (206) 521-1932
Phone (FAX): (206) 521-1930
email: nic...@u.washington.edu or shar...@u.washington.edu
We look forward to your participation.
Michael McGoodwin, M.D.
Dedra Buchwald, M.D.
April 30, 1997
-----------------------------------
Twins study: renewed call for participation
Dr. Dedra Buchwald is currently developing a registry of twins=20
comprised of fraternal and identical twins in which at least one twin=20
has CFS and/or FM. If you are interesting in participating in the=20
CFS/FM Twin Registry, please contact the research team as follows:
Nicolette Vajtay or Suzanne Hartman
Research Assistants, CFS/FM Twin Registry
Harborview Medical Center
325 9th Avenue, Box 359780
Seattle, WA 98104
Phone (Voice): (206) 521-1932
Phone (FAX): (206) 521-1930
email: nic...@u.washington.edu or shar...@u.washington.edu
For more information about this project, see the web page at
http://weber.u.washington.edu/~dedra/twins.html
or send an e-mail message which says GET CFS TWINS to address=20
LIST...@MAELSTROM.STJOHNS.EDU .
-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=
=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-
>>>7. Teitelbaum research trial
[The following is a statement by Dr. Jacob Teitelbaum, M.D.]
We invite patients with fibromyalgia who live within a two hour drive=20
of Annapolis, Maryland to participate in our double-blind placebo=20
controlled study.
Our recently published study showed that hormonal, immune, sleep and=20
nutritional deficiencies are common in CFIDS/FMS. When these were=20
treated simultaneously, most people's CFIDS/FMS improved. Fifty=20
seven percent showed complete resolution of fatigue and 39 percent=20
showed incomplete but significant improvement (J Musculoskeletal Pain=20
3[1995] p 91-110, paper can be ordered from the CFIDS Association of=20
America tel. 1-704-365-2343 or Haworth Press tel. 1-800-342-9678). =20
Our book "From Fatigued to Fantastic" (tel. 1-800-333-5287) describes=20
our treatment protocol in detail.
We currently have approximately 60 of the 100 needed patients=20
enrolled. The study requires four to six office visits (including an=20
initial 3 hour consultation) and runs over three to six months. At=20
the end of the study, placebo patients can switch to active=20
treatment.
Although NON-STUDY patients usually pay $1,250 for the initial=20
consult, $2,000 for initial lab testing, plus medication costs, study=20
patients save most of these costs. As long as your insurance company=20
(or you) pay the lab at least $600 (to cover the lab's reagent=20
costs), you would have no out of pocket costs. Also, while it=20
usually takes four months to get a new patient appointment, study=20
patients are often seen within a month.
Our study patients have by and large enjoyed the process. We invite=20
you to join our study group.
Jacob Teitelbaum M.D., Diplomate American Board of Internal Medicine
Barbara Bird, M.T., CLS.
2525 Riva Road, Suite 120
Annapolis, MD 21401
tel. (410) 573-5389
fax (410) 266-6104
-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=
=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-
>>>8. M.E. and CFS Medical Update
[The following citations appeared in the M.E. and CFS Medical Update
as provided by Dr. Ellen Goudsmit of the Melvin Ramsay Society of
Britain. Thanks to Deborah Shearer and David Axford for assistance
with this report.]
ME AND CFS MEDICAL UPDATE
Volume 9, number 1 1st March 1997
VIROLOGY
Buchwald, D., Ashley, RL., Pearlman, T., Kith, P and Komaroff, AL. =20
Viral serologies in patients with chronic fatigue syndrome. Journal=20
of Medical Virology, 1996, 50, 1, 25-30.
Wagner, M., Krueger, GRF., Ablashi, DV and Whitman, JE. Chronic=20
fatigue syndrome (CFS): a critical evaluation of testing for active=20
human herpesvirus-6 (HHV-6) infection: review of data of 107 cases. =20
Journal of Chronic Fatigue Syndrome, 1996, 2, 4, 3-16.
IMMUNOLOGY
Hilgers, A and Frank, J. Chronic fatigue syndrome: evaluation of a=20
30-criteria-score and correlation with immune activation. Journal of=20
Chronic Fatigue Syndrome, 1996, 2, 4, 35-47.
Sheng, WS., Hu, SX., Lamkin, A., Peterson, PK and Chao, CC. =20
Sus-ceptibility to immunologically mediated fatigue in C57BL/6 versus=20
Balb/c mice. Clinical Immunology and Immunopathology, 1996, 81, 2,=20
161-167.
PHYSIOLOGY, NEUROPHYSIOLOGY AND NEUROENDOCRINOLOGY
James, LC and Folen, RA. EEG biofeedback as a treatment for chronic=20
fatigue syndrome: a controlled case report. Behavioral Medicine,=20
1996, 22, 2, 77-81.
Samii, A., Wassermann, EM., Ikoma, K., Mercuri, B., George, MS.,=20
O'Fallon, A., Dale, JK., Straus, SE and Hallett, M. Decreased=20
postexercise facilitation of motor evoked potentials in patients with=20
chronic fatigue syndrome or depression. Neurology, 1996, 47, 6,=20
1410-1414.
Williams, G., Pirmohamed, J., Minors, D., Waterhouse,J., Buchan, I.,=20
Arendt, J and Edwards, RHT. Dissociation of body-temperature and=20
melatonin secretion circadian rhythms in patients with chronic=20
fatigue syndrome. Clinical Physiology, 1996, 16, 4, 327-337.
PSYCHOLOGY, NEUROPSYCHOLOGY AND PSYCHIATRY
Cope, H., Mann, A., Pelosi, A and David, A. Psychosocial risk=20
factors for chronic fatigue and chronic fatigue syndrome following=20
presumed viral illness: a case-control study. Psychological=20
Medicine, 1996, 26, 1197-1209.
Fry, AM and Martin, M. Cognitive idiosyncrasies among children with=20
the chronic fatigue syndrome: anomalies in self-reported activity=20
levels. Journal of Psychosomatic Research, 1996, 41, 3, 213-223.
Michiels, V., Cluydts, R., Fischler, B., Hoffmann, G., Le Bon, O and=20
De Meirleir, K. Cognitive functioning in patients with chronic=20
fatigue syndrome. Journal of Clinical and Experimental=20
Neuropsychology, 1996, 18, 5, 666-677.
EPIDEMIOLOGY
Bombardier, CH and Buchwald, D. Chronic fatigue, chronic fatigue=20
syndrome, and fibromyalgia. Disability and health-care use. Medical=20
Care, 1996, 34, 9, 924-930.
Buchwald, D., Umali, J., Pearlman, T., Kith, P., Ashley, R and Wener,=20
M. Postinfectious chronic fatigue: a distinct syndrome? Clinical=20
Infectious Diseases, 1996, 23, 2, 385-387.
Buchwald D., Pearlman, T., Umali, J., Schmaling, K and Katon, W.=20
Functional status in patients with chronic fatigue syndrome, other=20
fatiguing illnesses, and healthy individuals. American Journal of=20
Medicine, 1996, 101, 364-370.
Komaroff, AL., Fagioli, LR., Doolittle, TH., Gandek, B., Gleit, MA.,=20
Guerriero, RT., Kornish, J., Ware, NC., Ware, JE and Bates, DW. =20
Health status in patients with chronic fatigue syndrome and in=20
general population and disease comparison groups. American Journal of=20
Medicine, 1996, 101, 3, 281-290.
Levine, PH., Dale, JK., Benson-Grigg, E., Fritz, S., Gruggerman, S=20
and Straus, SE. A cluster of cases of chronic fatigue and chronic=20
fatigue syndrome: clinical and immunologic studies. Clinical=20
Infectious Diseases, 1996, 23, 408-409.
Reyes, M., Dobbins, JG., Mawle, AC., Steele, L., Gary, HE., Malani,=20
H., Schmid, S., Fukuda, K., Stewart, J., Nisenbaum, R and Reeves, WC. =20
Risk factors for chronic fatigue syndrome: a case-control study. =20
Journal of Chronic Fatigue Syndrome, 1996, 2, 4, 17-33.
THERAPEUTICS
Natelson, BH., Cheu, J., Pareja, J., Ellis, SP., Policastro, T and=20
Findley, TW. Randomized, double-blind, controlled placebo-phase in=20
trial of low dose phenelzine in the chronic fatigue syndrome. =20
Psychopharmacology, 1996, 124, 226-230.
REVIEWS
Scott, LV and Dinan, TG. The neuroendocrinology of chronic fatigue=20
syndrome. Journal of Chronic Fatigue Syndrome, 1996, 2, 4, 49-59.
Wearden, AJ and Appleby, L. Research on cognitive complaints and=20
cognitive functioning in patients with chronic fatigue syndrome=20
(CFS): what conclusions can we draw? Journal of Psychosomatic=20
Research, 1996, 41, 3, 197-211.
MISCELLANEOUS
Borok, G. Committee to investigate chronic fatigue syndrome. South=20
African Medical Journal, 1996, 86, 10, 1301.
Chagpar, A and Bland, RC. Chronic fatigue syndrome: a prodrome to=20
psychosis? [Letter] Canadian Journal of Psychiatry, 1996, 41, 8,=20
536-537.
Fry, AM and Martin, M. Fatigue in chronic fatigue syndrome: a=20
cognitive phenomenon? Journal of Psychosomatic Research, 1996, 41, 5,=20
415-426.
Gomborone, JE., Gorard, DA., Dewsnap, PA, Libby, GW and Farthing,=20
MJG. Prevalence of irritable bowel syndrome in chronic fatigue.=20
Journal of the Royal College of Physicians of London, 1996, 30, 6,=20
512-513.
Lindh, G., Samuelson, A., Hedlund, KO., Evengard, B., Lindquist, L=20
and Ehrnst, A. No findings of enteroviruses in Swedish patients with=20
chronic fatigue syndrome. Scandinavian Journal of Infectious=20
Diseases, 1996, 28, 3, 305-307.
Shepherd, C. Chronic fatigue syndrome. [Letter] Lancet, 1997, 349,=20
57-58.
Shepherd, C. Disagreements still exist over the chronic fatigue=20
syndrome. British Medical Journal, 1997, 314, 146.
Sutton, GC. 'Too tired to go to the support group': a health needs=20
assessment of myalgic encephalomyelitis. Journal of Public Health=20
Medicine, 1996, 18, 3, 343-349.
Various. Chronic fatigue syndrome. Lancet, 1996, 348, 1384-1385.
Wessely, S. Chronic fatigue syndrome. Journal of the Royal College=20
of Physicians of London, 1996, 30, 6, 497-504.
Wiebe, E. N of 1 trials. Managing patients with chronic fatigue=20
syndrome: two case reports. Canadian Family Physician, 1996, 42,=20
2214-2217.
RESEARCH ON FATIGUE AND FATIGUE SYNDROMES
Magnusson, AE, Nias, DKB and White, PD. Is perfectionism associated=20
with fatigue? Journal of Psychosomatic Research, 1996 441, 4,=20
377-383.
RESEARCH ON OTHER DISORDERS
Bode, L., Dietrich, DE., Stoyloff, R, Emrich, HM and Ludwig, H. =20
Amantadine and human Borna disease virus in vitro and in vivo in an=20
infected patient with bipolar depression. Lancet, 1997, 349,=20
178-179.
Bruno, RL., Zimmerman, JR, Creange, SJ., Lewis, T., Molzen, T and=20
Frick, NM. Bromocriptine in the treatment of post-polio fatigue. A=20
pilot study with implications for the pathophysiology of fatigue.=20
American Journal of Physical Medicine and Rehabilitation, 1996, 75,=20
340-347.
Turner Cobb, JM and Steptoe, A. Psychosocial stress and=20
susceptibility to upper respiratory tract illness in an adult=20
population sample. Psychosomatic Medicine, 1996, 58, 404-412.
N=9Brregaard, J., Lykkegaard, JJ., Mehlsen, J and Danneskiold-Sams=9Be,=20
B. Exercise training in treatment of fibromyalgia. Journal of=20
Musculoskeletal Pain, 1997, 5, 1, 71-79.
BOOK REVIEWS
Goldstein, JA. Betrayal by the Brain. New York: Haworth Press. 1996.=20
Pb. 273 pp. $23.96 USA. $36.00 elsewhere.
Courmel, K. A Companion Volume to Dr. Jay A. Goldstein's Betrayal by=20
the Brain. New York: Haworth Press. 1966. Pb. 90pp. $14.95 USA,=20
$18.00 elsewhere.
Colby, J. M.E. The New Plague. Peterborough: First and Best in
Klonoff, EA and Landrine, H. Preventing Misdiagnosis of Women. A=20
guide to physical disorders that have psychiatric symptoms. London:=20
Sage Publications. 1997. Pb. 152 pp. =9C16.50.
- - - - -
This issue was compiled by Dr. E.M. Goudsmit, Dr. A. Macintyre and=20
Mrs S. Howes. We gratefully acknowledge the help and support from=20
Dr. J. Gow, Dr. C. Shepherd, Dr. T. Jansen and Mr. D. Axford.
Assistants to the editor: Stella King and Frankie Campling.
The ME and CFS Medical Update is published by the Melvin Ramsay=20
Society. It is funded entirely by donations.
The Melvin Ramsay Society promotes scientific knowledge of the=20
causes, pathogenesis, diagnosis and management of fatigue states=20
associated with infection, in particular, myalgic encephalomyelitis.=20
Its membership is restricted to scientific and medical professionals.
-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=
=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-=3D-
>>>9. U.S. Government committee, and Change the Name issue
The formation of the new U.S. government CFS Coordinating Committee=20
will be announced soon, and its first meeting is expected to take=20
place on Thursday, May 29 in Washington, D.C. The issue of changing=20
the name of the illness is expected to be a prominent agenda item at=20
that committee's first meeting. The government's original March 30th=20
deadline for the Change the Name issue has been delayed due to the=20
late formation of this committee.
The Change the Name survey being conducted by the publisher of this=20
newsletter is continuing, and a full report will be published here=20
later this month. At the current time, the most popular choice that=20
is appearing in survey responses when readers are asked to select=20
from already-established scientific names and from eponyms is=20
"myalgic encephalopathy", followed in second place by "myalgic=20
encephalomyelitis". Current information about the Change the Name=20
survey can be found on the Internet at web address
http://www.cais.net/cfs-news/name.htm
or by e-mail send a message which says GET CFS NAME to address
LIST...@MAELSTROM.STJOHNS.EDU.
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D
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 STJOHNS Listserv on Internet; and a 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=20
CFS-...@MAELSTROM.STJOHNS.EDU or by Fido NetMail to 1:109/432, or
at telephone 1-202-966-8738, or postal address 2800 Quebec St NW,=20
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. =20
Copyright (c) 1997 by Roger Burns. Permission 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=20
document unaltered. This notice does not diminish the rights of=20
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.
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D
INTERNET users are encouraged to visit the CFS / M.E. web page at
http://www.cais.net/cfs-news and in particular to read the CFS FAQ
document at http://www.cais.net/cfs-news/faq.htm . That document
can be retrieved via e-mail by creating a message which says GET CFS
FAQ and send to address LIST...@MAELSTROM.STJOHNS.EDU .
The content of this independent newsletter and the accuracy of the
sources which it cites are solely the responsibility of Roger Burns.
To subscribe, e-mail a message in the form of SUB CFS-NEWS <your>
<name> to LIST...@MAELSTROM.STJOHNS.EDU . To get back issues, email
GET CFS-NEWS INDEX to that address and follow the instructions in
the file. Web address at the following URL:
http://www.cais.net/cfs-news/cfs-news.htm
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D