The newsletter of the Chronic Fatigue

Syndrome & Fibromyalgia Support

Group of Dallas-Fort Worth

Sponsored by Harris Methodist HEB

Hospital
Volume 1, October, 1999

SKEPTICAL OF SKEPTICS:
A DOCTOR WITH CFIDS SPEAKS OUT
Several years ago Tom English, MD, of Asheville, NC, wrote a letter about his experience as a CFIDS
patient that was published in the highly prestigious Journal of the American Medical Association. It
remains every bit as relevant and meaningful as the day he wrote it. The following is excerpted from
his letter.

“There is nothing
you hold dear that
S kepticism permeates our profession. It is ingrained during medical training and reinforced by
professional experience... Healthy skepticism is the “in” attitude for intelligent, discriminating
physicians. But healthy for whom?
Four years ago I was diagnosed as having CFS. The experience has given me a new perspective of
my profession, one that is not always flattering. In one early report the average CFS patient has
previously consulted 16 different physicians. Most were told they were in perfect health, that
they were depressed, or that they were under too much stress. Many were sent to psychiatrists.

this illness cannot Is CFS a real disease? I believe it is, but I cannot settle that here. I would only plant this seed in
the mind of skeptics: What if you are wrong? What are the consequences for your patients?
take from you. Imagine for a moment that you are the Subjective patient, not the Objective physician. You
catch a “cold” and thereafter the quality of your life is indelibly altered. You can’t think clearly.
Nothing.” Sometimes it’s all you can do to read the newspaper or follow the plot of a television program. Jet
lag without end. You inch along the fog-shrouded precipice of patient care, where once you
walked with confidence. Myalgias wander about your body with no apparent pattern. Symptoms
come and go, wax and wane. What is true today may be partially true tomorrow or totally false
next week. You know that sounds flaky, but, dammit, it’s happening to you.
IN THIS ISSUE continued on page 2

DOCTOR WITH CFIDS SPEAKS OUT

MICHELLE AKERS: STILL KICKIN’ MICHELLE AKERS: STILL KICKIN’

GAO INVESTIGATION

NAME CHANGE SURVEY

FALSE CFS DEPICTION M any have called Michelle Akers

LET’S CHAT: RECOVERY FROM CFS
TOXIC MERCURY
ORAL ALPHA INTERFERON
MONEY MATTERS
INTERNET & DISABILITY RESOURCES
CDC UPDATE ON CFS
UPCOMING MEETINGS
SPIRITUAL JOURNEYS
GATHERINGS
TABLE OF CONTENTS
the most talented soccer player in the
world, male or female. However, her biggest
challenge hasn’t been on the field. In 1991,
just weeks after leading the U.S. team to its
first World Cup title, she was struck with
CFS. Overwhelmed with fatigue, migraines,
depression, lack of balance, blurry vision,
cognitive dysfunction, and difficulty
sleeping, she felt like she was in hell. At her
worst she could barely sit in a chair or stand
in the shower. Simple chores could knock
her out for days or weeks. She cut her
training sessions drastically, finding that
exercise totally wiped her out. She played as
much as she could, often to the point of
collapse. Her teammates looked on in horror
as she lay in a heap on the locker room floor
while team doctors, consulting with Dr. Paul
Cheney, pumped bags of IV nutrients into
her ravaged body. Akers turned the corner in
1995 when she stopped fighting herself and
her illness. She began Cheney’s treatment
protocol, quit trying to do it all, and
rediscovered her faith. She said, “OK, God.
I’m giving you my wrecked body and life.
Let’s see what you can do with it. And God
turned my suffering into a blessing. CFIDS
has enabled me to find out who I am. If it
wasn’t for the darkness, I would never have
seen the stars.”
continued on page 2
1
 Doctor Speaks... continued from page 1 Akers... continued from page 1

You are exhausted, yet you can sleep only two or three hours a night. You were a jogger who ran On July 11, the US women’s soccer team
three miles regularly; now a walk around the block depletes your stamina. won the World Cup, and Reuters named
Akers the “most outstanding player of the
Strenuous exercise precipitates relapses that tournament.” Links to Michelle’s CFIDS
last weeks. There is nothing in your experience website, www.michelleakers.com/cfids.html,
in medical school, residency, or practice with
its grueling hours and sleep deprivation that
“This is no illness for and detailed news stories can be found at
www.cais.net/cfs-news/news.htm.
even approaches the fatigue you feel with this
illness. “Fatigue” is the most pathetically cookbook doctors. It is Thanks to Roger Burns and CFS-News for this
inadequate term. information.

I have talked with scores of fellow patients a disease for medical

who went to our profession for help, but GAO INVESTIGATES CFS
who came away humiliated, angry and
afraid. Their bodies told them they were
intellectuals with PROGRAMS
physically ill, but the psychospeculation of
supple and open
their physicians was only frightening and
infuriating—not reassuring. It told them that
their doctors had little understanding of the
A s a result of the Inspector General’s
audit that determined the CDC
diverted $12.9 million of the $22.7 million
real problem. Many patients had depleted minds.” designated for CFS
themselves financially, dragging in vain research, the General
through expensive series of tests and Accounting Office
consultants as their lives crumbled around will be exploring in
them. They had lost careers, homes, families, in addition to the loss of stamina and cognitive more detail the CFS
skills. There is nothing you hold dear that this illness cannot take from you. Nothing. programs at both the
CDC and the NIH.
Are we to believe that just because symptoms are strange and unfamiliar they cannot be real? Are The CDC director
we to assume that our laboratory tests are capable of screening for new diseases as well as old? stated that nearly $9 million dollars will be
Distrust of new ideas is as old as humankind; so are the harmful consequences of that distrust. restored to the CFS program over the next
The doctrines of Lister and Semmelweis were not generally accepted for more than 50 years. I four years. Kim Kenney, Executive Director
shudder to think of the death and misery caused by the skeptics during that half-century. of the CFIDS Association of America, is
concerned that the CDC plan doesn’t go far
Internists have long prided themselves on incisive intellects and superior diagnostic skills. It is enough.
time for those skills to focus on the complex subtleties of this illness. I ask for your patience. CFS
is sufficient indignity by itself; do not compound it. It takes considerable time and infinite The Chronic Fatigue Syndrome Coordinat-
patience to take an accurate history from a frail patient with impaired memory and concentra- ing Committee is recommending to Donna
tion, especially if that history is long and complex. But if you take that time, you can do a world Shalala, Secretary of Health and Human
of good. CFS may frustrate you, but it is equally fascinating and rewarding. Resist the tempta- Services, that the full $12.9 million be
tion of hurried, superficial evaluation. This is no illness for cookbook doctors. It is a disease for restored, that the funds be used for public
medical intellectuals with supple and open minds. service announcements and education of
primary care providers, and that a thorough
Reprinted with permission from J.A.M.A. eb. 27, 1991, Vol. 265, No. 8, p.964 copyright 1991, review of the CDC and NIH research be
American Medical Association. conducted.

From The CFIDS Association of America; to

FM STUDY IN CANADA read this media coverage, click on “recent
media coverage” at www.cfids.org.

R esearchers obtained startling results

from the largest epidemiology study of
Fibromyalgia ever done. They surveyed 3500
residents and found that FM afflicts one of
every 20 women and one of every 60 men,
which is substantially more than researchers
believed based on clinic visits. Among older
women, the indicence spikes to almost one
in 10 persons having the often painful and
debilitating disease.
The most disturbing fact was that three
quarters of people with FM didn’t know they
2
had it but had suffered for an average of 11
years. The head of the study, epidemiologist,
Kevin White, said, “It is not a fake illness, NERVE GROWTH
there is something real here.” He noted that
the illness is “poorly understood” and most
patients have been told, “it’s stress” or
A s reported in the July Journal of
Rheumatology 1999 Jul; 26(7): 1564-9,
the concentration of nerve growth factor in
“you’re just working too hard.” The study
the cerebrospinal fluid of FM patients was
also showed that half of those sampled have
significantly higher than in control subjects.
frequent fatigue and in 21% of cases, it
This suggests a central mechanism, involving
significantly limited activity. Two articles on
abnormalities in neuropeptides like nerve
the study were published in the July issue of
growth factor, may be a factor in the
the Journal of Rheumatology.
pathogenesis of Fibromyalgia.
WHAT’S IN A NAME?
THE SURVEY within two years likely. When asked about Many CFS activists argue that the current
cause, 39% of the ME group attributed it to name adds to the invalidation and stigmati-
What’s in a name? Plenty—when the subject
medical causes, compared to 30% of the FN zation process involved in the entire disease
is Chronic Fatigue Syndrome. According to
group and 22% of the CFS group. When condition. Gay Related Infectious
Leonard Jason, a DePaul University professor
asked about treatment, 67% of the CFS Disease became AIDS when
who recently conducted a study on the
group said they would include psychiatric very little was known about
topic, a name change would result in CFS
intervention, compared to 53% of the FN group it. Multiple Sclerosis,
being taken much more seriously.
and 48% of the ME group. historically known as
“hysterical paralysis,” was
One hundred five medical trainees—half
Some questions elicited similar responses once believed caused by stress
students, half residents—in either family
from all three study groups. Only 3% of the linked with oedipal fixations.
practice or psychiatry were randomly
entire group thought the patient was Name changes to other
assigned to one of three groups. Each group
malingering. 67% described the illness as illnesses benefited the patients
reviewed the same case study of a patient
severe; 57% rated the patient as severely despite limited scientific information
with classic CFS symptoms. The only
disabled; 43% felt the illness was stress- supporting name changes.
difference was the name ascribed to the
related and 37% felt the patient was
illness. It was described as Chronic Fatigue
suffering primarily from depression. Only Increasing scientific information supports a
Syndrome (CFS), Myalgic Encephalopathy
10% rated the cognitive impairment as name change for Chronic Fatigue Syn-
(ME), and Florence Nightingale disease
severe and only 19% saw the pain as being drome. To create more medical legitimacy
(FN). The latter two, ME and FN, are
severe. Psychiatric residents were less likely the name must change—which would
frequently suggested as alternative names for
to think the patient was malingering and consequently influence federal and state
CFS. ME is a slight variation of a name
rated the quality of life as significantly worse resources for research, prevention, and
already in use by some in Great Britain,
compare to the medical students. intervention–with the added benefit of
Australia, and New Zealand while FN is
improving patient care. It’s time to make a
named after the famous nurse, Florence
Nightingale, who was homebound for the STUDY SUGGESTIONS change!
last thirty years of her life with symptoms The researcher believes the study suggests
“Study Compares Medical Trainees’ Reactions
matching CFS. Her birthday, May 12, has the following: ME is perceived as a more
to Three Names for CFS,” Leonard Jason, et al,
been named International Awareness Day for debilitating illness with biological underpin-
July/August 1999, The CFIDS Chronicle;
CFS. nings and, none of the names convey the
published by the CFIDS Association of
severity of the cognitive impairment and
America, 1.800.442.3437.
WHAT TRAINEES THINK pain that are part of the illness for so many.
It also suggests that those in psychiatric
Each study group was questioned pertaining
residency programs may have more training
to the patient and the illness. When asked
and experience with complex disorders and
about prognosis, 42% of the FN group and
41% of the CFS group believed the patient
thus are more willing to view such syn-
dromes as serious, legitimate illnesses. W o rld
would improve within two years. Only 16% ’s
of the ME group thought improvement Ka t t
The DFW Lighthouse Credits
Published quarterly, the DFW Lighthouse strives to inform its members and the public about a variety of
topics relating to Chronic Fatigue Syndrome and Fibromyalgia and provide information on advocacy
issues. The CFS/FM Support Group of DFW is as a clearinghouse for information about Chronic Fatigue
Syndrome and Fibromyalgia. The Support Group does not endorse particular products or services, and the
ideas expressed in the DFW Lighthouse are strictly those of the authors or quoted individuals. The CFS/
FM Support Group of DFW, and the DFW Lighthouse assume no liability for any medical treatment or
other activity undertaken by readers. For medical advice, consult your health-care provider.

Managing Editor & Production Coordinator . . . . . . . . . . . . . . . . . . . . . . . . . Carol Sieverling, lsieverl@flash.net

Managing Editor & Designer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . LJ Fidler, catzcom@netzero.net
Technical Editor & Editorial Researcher . . . . . . . . . . . . . . . . . . . . . . . . . . . . Jackie Burns, raylewis@airmail.net

How to Contact Us:

The CFS/FM Support Group of DFW is headed up by Carol Sieverling, 513 Janann Street, Euless, Texas 76039
817.283.1115. You can view the DFW Lighthouse online at: www.virtualhometown.com/dfwcfids. Submissions may be
sent electronically to lsieverl@flash.net. We reserve the right to edit all submissions. You must have permission before
reproducing any material from the DFW Lighthouse; this may be obtained by writing Carol Sieverling at the above-
listed address. For any computer-related problems or services, design, layout, editing or writing services (preferably
for hire, but pro-bono services will be considered), please contact LJ Fidler at catzcom@netzero.net.
Copyright © 1999 by The CFS/FM Support Group of DFW. All rights reserved. Printed in the U.S.A. Waking up is hard
to do! 3
LET’S TALK!
RECOVERY FROM CHRONIC FATIGUE SYNDROME
W ebMD, www.webmd.com, uses
internet chat to provide information
about CFS and a variety of other medical
topics.
William Collinge, M.P.H., Ph.D., and
Abigail Platt Collinge, NCPsyA, shared their
thoughts about Chronic Fatigue Syndrome
recovery in this chat session. Cofounders of
the Intimacy & Healing Project, a program
for couples whose relationship is touched by
chronic illness, they are well qualified to
address this topic. After seven years of living
with CFIDS, Abigail now leads a full life
that includes jogging. Visit the WebMD site
for the full transcript from this July 7, 1999
chat session at my.webmd.com/member/
524107 or the Collinge’s website at
www.healthy.net/collinge. The excerpted
quotes from this chat follow.
COPING WITH FEAR & ANXIETY
Focus on the moment and take it one day at
a time. Remind yourself that these are
symptoms of the syndrome that will pass.
Have a daily practice, like meditation or
prayer, that can help bring peace into your
life. Focus on who you are as a human,
rather than what you are or are not
producing in the world.
MAINTAINING HOPE
We have known many other CFS sufferers
who were ill for up to 20 years and who now
consider themselves recovered. We choose
between hope and despair at any given
moment. What helped was meeting one
sufferer of CFIDS who had recovered. I kept
this picture of her in my mind for many
years; that picture kept me going. You do
not need to know 100 people who have
recovered. Just one.
DEFINING RECOVERY
We aren’t talking about a
naive vision of recovery in “...don’t wait
which symptoms are gone
forever. Recovery is a sense of
integrity and control of your
until you get
life combined with effective
management of symptoms so
they no longer control you.
better. Do what
TREATMENT you love.”
CFS is best treated through
self-healing practices and
4
lifestyle changes that promote and support
the body’s own healing process. Some
medications effectively treat symptoms but
none are curative of the syndrome itself. The
most effective approach from a medical
point of view is integrative medicine.
Conventional medicine is used for some of
the symptoms while herbal medicine is used
to strengthen and support the body’s
healing. A study I conducted found that
CFS patients who practiced some form of
meditation at least three times per week were
three to four times more likely to improve
after one year than patients who didn’t have
such a practice.
SPIRITUAL PERSPECTIVE
Looking at things from a larger spiritual
perspective is important in maintaining
hope. We must ask ourselves, what is my
body trying to tell me? What can I learn
from this illness? We have to take a radical
look at our lives, for example, assess which
relationships are healthy, and which are
toxic. Look within for resources, guidance,
and healing rather than looking outside
ourselves. One of the findings in the study I
mentioned earlier was that the people who
had very little social support did not improve
no matter how much self-healing they used.
TRANSFORMATION
I hesitate to use that word because it’s
loaded. However, what we have observed in
the people we worked with is that they are
literally new people. Their recovery has been
a process of discovering a new relationship to
life and a new sense of self. It’s not desirable
to pick up where you left off and go back
into the way of life that existed before you
became sick. There’s a real opportunity to
start over on all levels.
SUPPORT
It’s important to connect
with others with CFS
because it validates your
experience. It lets you
know that you aren’t crazy,
this is a real disease, and
you aren’t alone. On the
other hand, you must be
discerning because some
people with CFS don’t
believe recovery is
continued on page 5
FALSE CFS DEPICTION
I n the new movie “Mumford” a young
woman is miraculously cured of CFS with
exercise and analysis. This frustrating
travesty is one more example of the lack of
knowledge the general public has about CFS.
Such movies only reinforce common
misconceptions. We can’t change or stop this
movie, however, by voicing our displeasure
perhaps we can stop future movies from
including such false portrayls of CFS.
Directed by Lawrence Kasdan, the movie
stars Jane Adams, Martin Short, Ted
Danson, Hope Davis, Loren Dean, and
Jason Lee. Feedback about the depiction of
CFS in the movie “Mumford” can be sent to
several places. The official web site,
movies.go.com/mumford/index.html,
includes a feedback link. Quoted reviewers
on the site are Roger Ebert,
www.suntimes.com/geninfo/feedback.html
and Larry King, whose movie review is at
www.usatoday.com/life/columns/lking.htm.
He can be reached at: USA TODAY
Information Network, 1000 Wilson Blvd.,
22nd floor, Arlington, VA 22229. Yahoo!
also has a feedback form on which you can
post your review: movies.yahoo.com/movies/
guide/mumford.html.
Another organization, Chronic Immune and
Neurological Diseases Association, (CINDA)
has a sample letter to send to the CDC at
cinda.org. Just click on the ‘news’ button.
The letter asks the CDC to take responsibil-
ity for their actions in giving us such a
moronic name that stands up so well to
ridicule. It also urges them to become more
active in general public awareness. CINDA
also suggests sending a copy of your letter to
your elected officials in Washington, DC.
MERCK MANUAL NOW
LISTS CFS
T he Merck Manual of Diagnosis and
Therapy, “the most widely used general
medical textbook in the
world,” now lists CFS
among its hundreds of
recognized diseases and
conditions. Released on
April 22, the Centennial
Edition of the manual with the new CFS
listing can be seen online at www.cais.net/
cfs-news/merck.htm.
Thanks to Roger Burns and his publication
CFS-News for this information.
CFS & CHINESE MEDICINE
T wo doctors in China plan to
conduct a research study of Chinese
herbs in treating CFS. They believe CFS
treatment has been palliative and can only
relieve symptoms but cannot fundamentally
eliminate fatigue. They propose that
regulating homeostasis and enhancing
immunity are important in CFS treatment
and that many Chinese herbs do this.
Since Chinese herbs are cheap, simple,
efficacious and safe, they expect to achieve
good social and economic effects. This
research proposal was published in the
Journal of Chronic Fatigue Syndrome, Vol. 5,
no. 1, 1999.
Copies available from Haworth Document
Delivery Service at 1.800.HAWORTH or
getinfo@haworthpressinc.com.
MEMBERS’ ENGAGEMENT
G reat excitement filled the room after
our last meeting when Robb Rockel
and Tricia Conboy announced their
engagement. Robb and Tricia met through
our support group just over a year ago. They
credit our leader, Carol, with helping them
connect, since she suggested that Robb
contact Tricia.
CFS disabled Robb in 1995 while he was
attending college in Colorado. Tricia was
attending college in Maryland when CFS
struck and disabled her in 1996. Both had to
return home and live with their parents,
unable to work or continue their
education.
Fortunately, both families eventually moved
to the metroplex. It’s thrilling to know our
support group provided a place for them to
meet, particularly when illness prevented
other socializing. Robb was also recently
awarded Social Security Disability for CFS
on his first application.
e happy
ns to th
latio
atu
Congr
!
couple
possible, and reinforce a sense of helplessness,
hopelessness, and victimhood.
EXPECTATIONS
Realistic expectations are important so you
don’t set yourself up for failure and disap-
pointment. Take baby steps. Go for quality
rather than quantity. There was a time when
I was so sick I couldn’t work; I couldn’t get
out of bed; I couldn’t balance my own
checkbook; I couldn’t feed my 2 year-old
son; and, I was a single mother at the time.
On those days, I had to remind myself that
it was a good day if I could just wake up,
breathe, and go to sleep. People must ask
themselves what they feel passionate about.
What makes your heart sing even under
these extraordinarily challenging conditions?
Find meaning and purpose even when you
are in pain, debilitated and feeling despair.
Even in those moments, ask yourself what
would lift your heart in this moment.
Whether it’s looking at the face of your
child, enjoying a sunset or prayer; don’t wait
until you get better. Do the things you love.
CHANCE OF RECOVERY
It’s a mystery. Some people do all the right
things but don’t get well. Others do all the
wrong things and still get well. It’s impos-
sible to say how much is a matter of a
genetic vulnerability, environmental toxins,
pathogens, stress, and the many other factors
that contribute to CFS. However, we still
believe that, to the extent a you take
seriously the challenge of leading a health-
promoting lifestyle and look within to your
internal healing resources, your chances of
recovery are much better.
PETITION FOR EXPANDED GAO INVESTIGATION
A group of CFIDS patients
are circulating a petition
requesting that the GAO
investigate the issue of
scientific bias against CFS at
the CDC and NIH. At the end
of July, a GAO official stated that
they had no plans to investigate the issue
of scientific bias. There is concern that
such bias has affected the design and scope
of epidemiological studies, the formulation
of the case definitions, and led to the
CFS Recovery... continued from page 4
ROLE OF THE CAREGIVER
The well partner or caregiver also has pain
and suffering of their own and must
acknowledge it within themselves and to the
sufferer. There must be a great deal of honest
communication as to each person’s needs and
limitations. This communication can result
in a growing sense of intimacy between both
parties that is, by itself, healing. To be a
caregiver of a person with CFS is one of the
most difficult and challenging roles. That’s
why I lost my first marriage. The stress of
this illness so few people comprehend was
too much. If he could have come to terms
with his own needs, pain, and feelings about
illness, and then talked with me, perhaps we
could have weathered the storm of CFS.
Above all, a caregiver must listen and offer
encouragement while not being attached to
any particular outcome. This is a delicate
balance and the sufferer must have compas-
sion for the caregiver as well.
RESEARCH BREAKTHROUGH
A major scientific
discovery relating to
the sleep process has been
made; researchers found a
light-sensing protein
known as cryptochrome
that works with other
proteins to regulate the ebb and flow of the
body clock. If a way to apply the discovery
can be found, it may be possible to reset the
body clock quickly to various phases using
crytochrome. Published in the journal, Cell,
and picked up by Reuters, this study was
posted on Co-Cure.
funding of research that emphasizes a
psychiatric etiology of CFS.
A copy of the petition can be seen at
www.co-cure.org/gao.htm. This is an easy
way you can help encourage the GAO to
continue to investigate. You can print it off,
sign it, and mail it in to the organizers, who
will present it to the General Accounting
Office. Upon request, Carol will mail you a
copy. Make your voice heard!
5
INTERNATIONAL CFS CONFERENCES MEDIA BITES

R esearchers and clinicians from around the world met in Sydney, Australia in February
this year to share the latest information about Chronic Fatigue Syndrome. A variety of
topics were covered including mycoplasma infections, stealth viruses, neurological mechanisms,
The efforts of our local support group were
featured in an article on page 23 of the July/
August CFIDS Chronicle; four of the quilt
coxeilla burnetii, biochemical abnormalities, case studies, predicting disability, immune activa- squares on the cover came from our group.
tion, chronic pain, and dysautonomia. Conference abstracts can be seen at www.ahmf.org. D
The Second World Congress on CFS was held in Brussels, Belgium in September this year. The The Irving Community Cable Channel aired
program was scheduled to included information on epidemiology, clinical observations, diagnosis, a story about CFS and Dr. Cheney’s seminar.
treatment, related disorders, disability, and creating a world organization. The scientific commit- D
tee included researchers and clinicians from the United Kingdom, the United States, Japan, The Washington Post ran two stories related
France, Australia, and Italy. Information on the conference can be found at www.cfs-clinic.com. to the CDC scandal, one on July 21, and
another on August 6.
Both of the above came from Co-Cure.
D
The Dallas Morning News ran a story on
NEW FM DISABILITY TEST TOXIC MERCURY Michelle Akers and CFS on September 20 in
the Health & Fitness Section.
D
A ccuMed, www.accumedsystems.com. an
Atlanta-based mobile diagnostics
telemedicine company, announced a new
T he CFS Radio Show recently
interviewed Professor Boyd E. Haley,
Chairman, Department Of Chemistry at the
Parade Magazine featured a good article on
FM in the July 18 Sunday paper.
diagnostic test to assess disability in FM University of Kentucky. Professor Haley
patients. AccuMed says their cardiopulmo- spoke about the dangers of amalgam fillings D
nary exercise test provides “a true, objective from the mercury they contain and the CNN did a good story about a woman living
metabolic measurement of effort, allowing systemic damage they can cause to people with FM; read it at www.cnn.com/
the physician to conclude if the patient is with immune-suppressed systems. A HEALTH/women/9908/03/fibromyalgia.
wholly, partially, or in no way disabled from transcript can be found at members.aol.com/
a functional standpoint.” rgm1/private/transcr.htm. Thanks, Carolyn
Vivani, for transcribing the interview and
Insurers are evaluating the test as a way to posting it to Co-Cure.
NEW STAFF
appropriately direct the flow of disability
dollars. About 15% of FM patients are Hi there!
considered partially or wholly disabled by MEETING TAPES I’m LJ Fidler (Lori) and
conventional criteria. The test is also being I’m helping Carol reshape
the newsletter. I’ve had
used to assess disability in patients with
“fatigue and malaise.” V ideotape copies of
Dr. Cheney’s May
seminar are still available.
about 10 years experience producing a
variety of printed materials. I’ve had CFS for
If anyone has personal experience and wants We’ve sold almost 250! about 10 years now. It took five years, a
to share the results, please contact Carol. variety of doctors, and a lot of research
Audio cassettes of the following before I finally discovered the correct
medical “label” and got a diagnosis.
CDC RETALIATION meetings are available:
❏ Kim Kenney, Executive Director of The
CFIDS Association of America speaks about Since I was laid off from IBM, I’ve been

D r. William Reeves, wcr1@cdc.gov,

claims that since questioning the CFS
budget in 1997, he has received less favorable
CFIDS Education, Advocacy & Research
❏ Rev. Pam Douglas Smith explores our
trying to start a computer-related business.
Needless to say, with the illness that’s been
extremely difficult despite previously starting
spiritual journey through the characters and
evaluations, been denied pay raises, and and maintaining two other businesses prior
story of The Wizard of Oz
received an undeserved formal reprimand. He to getting sick.
❏ Dr. Jay Seastrunk speaks about CFS and
also says management is blocking his efforts
the brain, cognitive testing by SPECT, MRI
to fill an essential staff position on his team. Meanwhile, I’m excited
and MRS, and treatment with nerontin
❏ Frankie Burget explains myofascial release to work with Carol in
He recently filed a complaint charging the reshaping the newsletter
❏ Carol Sieverling explores chronic illness
CDC with violating the Whistleblower with a new look and
and spirituality
Protection Act. He is asking the Office of style. While this work is
❏ Nancy Didriksen, clinical psychologist,
Special Counsel to back his effort to cleanse his most exhausting, I do love it and I hope you
explores healing, coping and resolving issues.
record, restore his staff levels and award him all love the results! As with most things, it’s
$300,000 damages. If you want to add an ongoing process! Enjoy the new look and
To order either videotape or a cassette, mail
support, send letters to Dr. Donna Shalala, I welcome all constructive comments! Hugs!
a check for $3.00 per cassette or $15 per
Secretary of Health and Human Services,
videotape, made out to Carol Sieverling
200 Independence Ave., SW, Washington
along with the list of what you want and
DC 20201.
your mailing address.
6
ORAL ALPHA INTERFERON
M any FM and CFS patients trying
alpha interferon report significant
improvement. Now, more medical evidence
is available. The entire issue of the August
1999 Journal of Interferon and Cytokine
Research, www. liebertonline.com, focuses on
oral interferon. Included are literature
reviews, articles on the mechanism of action,
and human trials. Two articles concern
studies by Dr. Jon Russell in San Antonio
using the oral lozenges (made by Amarillo
Biosciences, www.amarbio.com). One
prominent CFIDS activist experiencing
great improvement states that patients who
are improving are taking three–four doses a
day, however, the optimum dose varies from
person to person. The publisher can be
contacted by email, info@liebertpub.com;
phone 914.834.3100; or, fax 914.834.3688.
INTERNET RESOURCES
Three new discussion lists are available to
the CFS/FM community. For women who
are or want to be pregnant, go to www.
onelist.com/subscribe/CFIDSorFMS
pregnant. For advocacy about CFS/FM/FM/
MCS/GWI, a new list has formed. To
subscribe, send a blank email to cfsadvocacy-
subscribe@egroups. com or go to www.
egroups.com/list/cfsadvocacy/info.html. For
announcements and updates from the
CFIDS Association of America, send an
email to CSN@cfids.org stating you’re a
DFW support group member and want to
subscribe to the cfids-support-net.
Newsgroups range from very positive to quite
negative or divisive; most newsgroups go
through all ranges eventually. Just take what
you need and ignore the rest.
Here are some informative sites to consider:
www.execpc.com/~keephope/v1999.html, a
summary of antiviral HHV6 therapies; the
University of Newcastle in Australia is doing
cutting edge CFS research. Their Collabora-
tive Pain Research Unit and Bioscreen
Education Service website, www.users.
bigpond.net.au/info-cfs_newcastle. htm-
index.html, describes their research.
Miryam Ehrlich Williamson, www.
mwilliamson.com, author of “The Fibromy-
algia Relief Book” and “Fibromyalgia: A
Comprehensive Approach” spoke on WebMD
chat entitled “FMS: Managing Chronic
Pain.” The transcript is at my.webmd.com/
member/527508.
MONEY MATTERS!
CLINIC OF ANGELS
The Clinic of Angels, www.geocities.com/
available at American Nutri-
tion, at 1.800.454.3724 or
www.americannutrition.com. The
HotSprings/Chalet/1835, a nonprofit
Boston Buyer’s Club also offers
organization, provides funds to financially
discounts, www.bgladco.com/bbc or
strapped members of the CFS/FM commu-
1.800.435.5586. Many thanks to the
nity so they can receive treatment and
members who sent this information.
prescribed medications. Board members
validate and prioritize medical treatment D
requests and negotiate with specialists. They
also negotiate with mail-order pharmacies
FREE INTERNET SERVICE
Do you want to connect to the internet and
for medications. To donate funds or request
access all the incredible information and
help, write to: Clinic of Angels, 5100
resources online? When you have a free
Burchette Road, Suite 1003, Tampa, FL
introductory month from one of the many
33647.
D
services that make such free offers, check out
www.netzero.com. It provides free internet
FINANCIAL HELP service.
Need help paying those out-of-pocket
An alternative, Juno,
expenses for Medicare or Medicaid? The
www.juno.com, offers
Health Care Financing Administration offers
free basic internet
four programs with varying levels of help,
based on your situation. For more informa-
email for anyone who
can access one of their
tion see www.hcfa.gov/medicaid/obs4.htm
many access numbers.
or contact your state, county, or local
Call 1.800.TRY.JUNO for information.
medical assistance office. Check your
Remember—no guarantees—your mileage
telephone directory for the office nearest
may vary!
you, listed under Medicaid, Social Services,
Medical Assistance, Public Assistance, or
Human Services. Alternatively, call HCFA at
1.800.638.6833.
D DISABILITY RESOURCES
PRESCRIPTION ASSISTANCE
Many drug manufacturers provide free and/
or low-cost prescriptions to those who
qualify. See www.institute-dc.org for a list of
I f disability is or could become a concern,
information is a powerful weapon. Some
internet websites may interest you:
drugs, companies, and contact information. www.cfids.org/disability.html or www.cfids-
You can also order the booklet (#PD370) me.org/disinissues for information, links, a
from: The Institute, Capitol Hill Office, 611 good lawyer list, and an email discussion
Pennsylvania Avenue SE #1010, Washington group with others going through the
DC 20003-4303. disability process.
D The Department of Health and Human
LOW-COST SUPPLEMENTS Resources recently established the first-ever
In addition to the discount companies federal resource center for women with
already mentioned in previous newsletters disabilities as part of the National Women’s
(Shaklee Products at cost, Mary, Health Information Center—a gateway to
817.481.4056; Vitamin Discount Connec- federal and private sector women’s health
tion, 1.800.848.2990; NEEDS, publications and organizations. For more
1.800.634.1380; and, Health Net, information, call 1.800.994.WOMAN or go
1.888.787.7536), several others have come to www.4women.gov.
to our attention. A London-based firm,
Quality Health, Inc., carries an extensive The National Organization of Social Security
listing of vitamins and supplements, as well Claimants’ Representatives website, www.
as “smart drugs” often not available in the nosscr.org has resource information and
US. See www.qhi.co.uk or fax them at answers to frequently asked questions. The
44.171.580.2043. For major discounts on a Social Security Advisory Service, www.
few select products, see www.seaquake.com/ ssas.com, allows you to ask questions at the
bulk.htm. Discount supplements are also site.
7
ONE TO ONE
A single mother on long-term disability for
CFS has just been turned down on her first
application for SSDI. Her children also have
health problems and huge medical expenses.
If anyone knows of breaks on utilities in the
DFW area for the disabled or other
assistance programs, please contact Carol.
❖ practitioner.
Stephen, bullocks@gte.net, reports that before
beginning his protocol, he could only work
less than ten hours weekly. Now he can work
an average of 30 hours a week. Over time,
his protocol has built to include a multitude
of both drugs and nutritional supplements.
Since viewing the tape of Dr. Cheney’s
seminar he has begun Immunocal, Ultra
Clear Sustain, and hydroxycobalamin B-12
injections and s een noticeable improvement.
❖
Gloria reports that she is prone to GERD
(gastroesophageal reflux disorder) and found
that the drug Celbrex exacerbated it. Others
prone to GERD may want to use cox-2
inhibitors with caution.
❖ quotations about CFS by the medical
Carol, our group leader, is experiencing
significant improvement on IMUPlus, a
supplement recommended by Dr. Cheney.
This product works to restore the detox
pathway and antiviral/antimicrobial
mechanisms. Available from NEEDS,
1.800.643.1380, it’s $82.50 + S/H for 60
packets. Although two packets daily are the
recommended dose, Carol initially crashed
on this amount. She dropped to half a pack,
then very slowly upped the dose to two
packs daily. She believes it has made more
difference than any other treatment.
❖ fluctuated. At the five-year mark, 31.4%
Susanna reports that problems with your
insurance company and their decisions
regarding claims can be reported to the Texas
Department of Insurance, www.tdi.state.tx.us,
333 Guadalupe Street, PO Box 149104,
Austin, Texas 78714-9104, 512.463.6169.
❖
After years of FM, Patsy S. is now pain-free.
She and others in her support group
discovered that those who have ADD in
addition to FM often respond remarkably to
certain drugs. Her story is at www.add-
fibromyalgia.com or by contacting Carol.
❖ selective slow wave sleep disruption on
Dave Williams, deafwhale@yahoo.com,
(945.946.5551) has had CFS for years but
now considers himself fully recovered. He
developed a protocol that has shown profound
8
benefits for people who have gained weight,
have sore throats after exertion, have frequent
tender lymph nodes in the neck area, perspire
a lot, and their perspiration is unusually
salty. He offers products at drastically reduced
prices at www.seaquake.com/bulk.html. Dave
is a very well read patient, not a medical
HMO REFORM
T he Bipartisan Consensus Managed
Care Improvement Act, H.R. 2723,
which guarantees certain patients rights is in
danger!
If you want to make a difference with this
bill, write your representative or visit the site
www.patientadvocacy.org for a sample letter
online. Representative information can be
found at www.congress.org/elecmail.html.
CDC UPDATE ON CFS
F rom August 1989 to November
1997, the Centers for Disease Control
(CDC) followed one hundred fifty-five CFS
patients. Patients with sudden onset of
CFS reported significantly
higher frequencies of sore
throat, fever, tender lymph
nodes, chills, difficulty thinking or
concentrating, and depression
than those patients with gradual
onset of CFS. As the illness progressed,
differences in symptoms between the two
groups disappeared and the symptoms
of the patients had recovered. At the ten-
year mark, 48.1% had recovered.
In constrast to its earlier report, the CDC
reports no difference in recovery rates for
those with sudden versus gradual CFS onset.
The study concludes that recovery can be
reported at any time in the course of the
illness, but is more likely to occur in the
early years. The report calls for additional
longitudinal studies describing the course of
CFS, determining the recurrence of the
illness over time, and predicting the
occurrence of symptoms over time.
Chronic Fatigue Syndrome Progression and
Self-Defined Recovery: Evidence from the CDC
Surveillance System. Journal of Chronic
Fatigue Syndrome Vol. 5, No. 1, 1999. Copies
from Haworth Press, 1.800.342.9678.
STORIES & PHOTOS NEEDED
Chronic Relief is a new magazine for those
with CFS, FM, chronic pain, and related
illnesses. Information, including submission
guidelines can be found at www.freeyellow.
com/members7/chronic-relief/index.html or
obtained by sending a business-sized SASE
to: CRP, PO Box 1321, Tuscaloosa, AL
35403; or, call 205.752.3278.
D
One of our group members, Gaye Tindel, an
RN, wants to publish a book from the
perspective of a patient with medical
experience. She requests any information
members are willing to share including,
personal story, disability issues, and similar
topics. Contact Gaye at 120 Coury Road,
Everman, Texas 76140, 817. 551.1971, or
tindel@flash.net.
D
Del Kennedy hopes to publish a book of stark
photography portraying the worst effects of
Myalgic Encephalomyelitis (CFS). The MS
Society’s poster campaign triggered the idea.
The concept calls for juxtaposing ‘skeptical’
community with similar statements about
MS made in the earlier in this century when
it was called hysterical paralysis. Financial
sponsors and professional photographers are
needed. Contact Del at godot@clara.co.uk.
D
Laura Wright is collecting information
(surveys) about people’s experiences with
chronic illness and health insurance
portability, gemini.hmi.missouri.edu/
wrightl. Laura is with the Department Of
Health Management and Informatics,
University of Missouri–Columbia.
SLEEP DISRUPTION
R esearchers
disrupted the slow
wave sleep of controls to
evoke the FM profile of musculoskeletal
pain, fatigue, and abnormal alpha EEG sleep
pattern. They concluded that disrupted sleep
is most likely an important factor in the
symptoms of FM. Journal of Rheumatology,
1999 Jul; 26(7): 1568–92; “Effects of
musculoskeletal pain and fatigue in middle-
aged women.” Lentz, et al.
SPIRITUAL JOURNEYS
S everal people have expressed interest in a
spiritual journeys group to explore the
spiritual aspects of living with chronic
illness. Our culture has become extremely
fragmented and focused on specialization.
We take our bodies to the doctor, our minds
to school, and our souls to church. This is
the place to integrate all three.
It offers the opportunity to worship briefly
and informally, pray with and for each other,
and share struggles as well as joys and
insights. Above all, it’s about growing in
faith and drawing upon the hope and power
that God’s presence offers. We would be
intentional about trying to honor whatever
tradition people claim.
We are considering either Saturday or
Sunday afternoons at the hospital in a room
with comfortable chairs! We would meet
once a quarter beginning next year, and
every other month if there is enough
interest. For feedback, contact Carol.
GATHERINGS
O ur September 11 kickoff “non-
party” party, “non-meeting” meeting
was a great success.
Twenty people
gathered, ate pizza,
and generally
enjoyed being
with others who
understood about
living with this illness.
Our next gathering is November 20 from 6-
9 p.m. in the Oak Creek Lane Apartments
clubhouse/office in Bedford. We’ll order
pizza; bring munchies if you like.
We hope to have these once every quarter,
possibly every other month if there is enough
interest. A social coordinator is needed—
someone please volunteer! We will also need
folks who can volunteer their home or
apartment meeting room. If you need
directions, want to volunteer for coordina-
tor, or volunteer your space, contact Carol!
“Gatherings” is the temporary name for
these events. When considering names
remember we want these meetings to be fun
and uplifting, but, like the name CFS is
frequently misunderstood, remember we
don’t want to spread incorrect perceptions to
others about this disease. So, give us your
ideas and tell us what you think!
UPCOMING MEETINGS
Tuesday, October 19, 7:00 p.m.
John Gonino, D.O.
“TREATMENT OF CHRONIC FATIGUE SYNDROME
& FIBROMYALGIA”
Dr. Gonino specializes in treating CFS, FM, and similar conditions so common
to those who have CFS or FM. To achieve optimum health, Dr. Gonino treats symptoms using
both conventional medicine and natural therapies to heal the body at the cellular level. In 1995,
his wife was diagnosed with CFS so he has experience in the difficulties of living with chronic
illness. His staff includes a naturopathic doctor, a holistic medicine RN, and an IV therapist.
Treatments include intravenous vitamin and dark field blood microscopy amongst others.
Saturday, October 23, 1:30–3:00 p.m.
Les Simpson, Ph.D.
“ABNORMAL RED BLOOD CELL MORPHOLOGY IN CFS & FM”
Emmanuel Presbyterian Church, 2701 Harwood Road, Bedford
A former medical school researcher and World Health Organization lecturer from New Zealand,
Dr. Simpson has found that the blood of CFS/FM patients is characterized by changed red cell
shape populations and increased rigidity. The resulting impaired capillary blood flow compro-
mises the oxygenation of tissues and organs. Dr. Simpson’s seminar features a slide presentation
and information about his treatment protocol. Blood will be drawn from those interested in
having the $30 electron microscope test (valued at $220). A report suitable for disability is
available for $8. There will be a $5 admission charge to help cover
travel expenses. Please RSVP to Carol. Note that this is a special
Saturday meeting not held at the hospital.
Saturday, November 13, 3:00–4:30 p.m.
Elizabeth Dunlap, attorney
“DISABILITY ISSUES”
If you are dealing with disability or think it could be a possibility in the future, don’t miss this
important meeting with attorney Elizabeth Dunlap. Elizabeth represents adults with Social
Security Disability claims. She initiated the
formation of the Dallas Association of Social
Security Claimants Attorneys and has served
as it’s President for two years. If you have
B RAIN OG F
successfully navigated the disability system
and have advice and encouragement to offer,
please come share your experience. Note that
T hree CFS patients were
discussing the travails of brain
fog. One said, “Sometimes I catch
this is a Saturday afternoon meeting. There myself with a jar of mayonnaise in
will be no Tuesday night meeting in November. my hand in front of the refrigerator
and can’t remember whether I need
Tuesday, December 14, 7:00 p.m. to put it away, or start making a
sandwich.”
“ANNUAL PLANNING MEETING:
CHOOSING TOPICS & SPEAKERS FOR The second chimed in, “Really,
YEAR 2000” sometimes I find myself on the
Make your voice heard! Be sure to join us for landing of the stairs and can’t
this very important planning meeting. We’ll remember whether I was on my
explore many possibilities for the coming way up or on my way down.”
year. It helps to have lots of people there to
help determine which topics are the most The third one responded, “Well,
interesting and beneficial. If you can’t make I’m glad I don’t have those kind of
it but know a potential speaker, please problems, knock on wood,” as she
contact Carol. Note that this is the second rapped her knuckles on the table.
Tuesday of the month, not the third. There “That must be the door, I’ll get it.”
will be no third Tuesday meeting in
December.
9
THE REST OF THE STORY . . .
Stephen, bullocks@gte.net, reports that
before beginning the following protocol, he
could only work less than ten hours weekly.
He can now work an average of 30 hours a
week. Over the last several years his protocol
has built to include aspirin, naproxen
sodium, vitamin C, garlic tablets, ginkgo,
DHA, creatine, bee-venom injections, reishi,
melatonin, valerian, klonopin, neurontin,
talwin, pletal, ambien or elavil (alternates),
amantadine (an antiviral), and low doses of
hydrocortisone at the beginning of any
relapse. Since viewing our videotape of Dr.
Cheney’s seminar he has begun Immunocal,
Ultra Clear Sustain, and hydroxycobalamin
B-12 injections and seen noticeable
improvement.
Carol, our group leader, is experiencing
significant improvement on the highly
specialized whey protein supplement
recommended by Dr. Cheney. Immunocal
and IMUPlus are two such products of
which Dr. Cheney is confident. Available
from Allergy Research/NutriCology at $110
for 60 packets, IMUPlus is the cheaper of
the two products. A 25% discount is
available for those 55 and over,
1.800.545.9960, www.nutricology.com.
This product works to restore the detox
pathway and antiviral/antimicrobial
mechanisms. Although two packets a day are
the recommended dose, Carol became much
sicker and initially crashed using this
amount. She was detoxing too quickly,
releasing more toxins than her system could
handle. Since her fever returned, it seems
her antiviral/anti microbial
mechanisms were kicking in too aggressively
also. She dropped back to half a pack for
several weeks, then slowly advanced the dose
back up to the two packs a day. She believes
it has made more difference than any other
single treatment.
Retta, a group member who has had CFS
for a couple of years, started on Nutrition
for Life products on her doctor’s
recommendation. They seem to be helping
her a great deal. She has since become a
distributor and would be happy to talk with
anyone about the products or refer them to
her doctor in Sachse. She can be reached at
either 972.429.9360 or
rfsundblad@aol.com.
Another group member, Cheryl, is a
working veterinarian who has had CFS for
10
15 years. She recently found some herbal
and nutritional products that have allowed
her to get off antidepressants, allergy
injections, all prescription meds, and all
other vitamin supplements. She has lost
weight and has more energy than she has
had in years. Reach her at 972.732.8831 or
chemovet@aol.com.
After years of FM, Patsy Stephens is now
pain-free. She and others in her support
group discovered that those who have ADD
in addition to FM often respond remarkably
to certain drugs. Until she read the criteria–
inattention, hyperactivity, impulsivity–she
had no idea she also had ADD. Her story
can be found at www.add-fibromyalgia.com
or by contacting Carol.
Dave Williams has had CFS for years but
now considers himself fully recovered. After
much study and research he developed a
protocol that has shown profound benefits
for certain people. If you have gained
weight, experience a sore throat after
exertion, have frequent tender lymph nodes
in the neck area, perspire a lot, and notice
your perspiration is unusually salty, you fit
his profile. By special manufacturer
arrangement, Dave offers the products for
his protocol at drastically reduced prices on
www.seaquake.com/bulk.html.
His website says, “All our bulk items come
with a manfacturer’s certificate of analysis
and are quaranteed to be the most pure, top
grade products currently available in the
world.” Dave went out looking for sources of
product for himself and others to take; he’s
trying to prove his theory about his
protocol. He wants people to get better, to
actually to get well on his products. Contact
him at deafwhale@yahoo.com, or 945.946.5551.
Note: Dave is a very well read patient, not a
medical practitioner.
THANKS!
M any thanks to the amazing women
at Emmanuel Presbyterian Church
who so willingly take care of the folding,
licking, sticking, and other mailing and
distribution-related
needs for us. Also, many
thanks to the HEB
Hospital for their
donation of printing and
mailing services. Without
you all, this publication
would not be possible.
FULL SPEAKER INFO
Dr. Gonino specializes in treating CFS, FM,
Irritable Bowel Syndrome, Candidiasis (yeast
infection), Hypoglycemia, Sleep Disrup-
tions, Chronic Headaches, Allergies, and
similar conditions common to those who
have CFS or FM. To achieve optimum
health, Dr. Gonino control the symptoms
using conventional medicine and natural
therapies to heal the body at the cellular
level. In 1995, his wife was diagnosed with
CFS, which gives him personal experience in
the difficulties of living with chronic illness.
His staff includes a naturopathic doctor, an
RN trained in holistic medicine, an IV
therapist, and a physical medicine therapist.
Treatments include: intravenous vitamin
and oxidative therapies; nutrition therapies;
allergy testing and treatment; phase contrast
and dark field blood microscopy; natural
hormones; manipulative medicine; and,
chelation.
A former medical school researcher and
World Health Organization lecturer from
New Zealand, Dr. Simpson has found that
the blood of CFS/FM patients is character-
ized by changed red cell shape populations
and increased rigidity. The resulting
impaired capillary blood flow compromises
the oxygenation of tissues and organs. Dr.
Simpson’s seminar features a slide
presentation and information about his
treatment protocol.
After graduation from West Virginia with a
BS in Economics, magna cum laude, in
1980 and its College of Law in 1983,
Elizabeth Dunlap was a general practitioner,
emphasizing Social Security disability and
Worker’s Comp cases, for 6 years in Pt.
Pleasant, West Virginia. She relocated to
Dallas, Texas in 1989 to join Carl Weisbrod
in his disability practice, rising to junior
partner in 1992. Over a thousand hearings
and appeals later, she returned to solo
practice in 1998 where she continues to
handle only disability claims. She initiated
the formation of the Dallas Association of
Social Security Claimants Attorneys in late
1992 and served as its President for two
years.
CHRONIC FATIGUE SYNDROME
& FIBROMYALGIA SUPPORT
GROUP OF DFW
I f you find any listing in this newsletter
which references calling or contacting
Carol, it references our group leader,
Carol Sieverling; see the credits for further
information about contacting Carol. Please
note that this newsletter will be available online
also at:www.virtualhometown.com/dfwcfids.
The CFS/FM Support Group of DFW
meets from 7:00–8:30 p.m., the third
Tuesday of each month at Harris Methodist
HEB Hospital, located at Hwy 183 and
Hospital Parkway in Bedford. We meet on
the first floor of the Edwards Cancer Center;
signs will direct you to the appropriate room.
Some patients are affected by chemical
odors. We ask for your thoughtful consider-
ation of others—don’t wear perfume, cologne
or clothes exposed to smoke to the meeting.
Remember that common household agents
frequently contain fragrances also.
Advocacy continued...
Please write to at least one of the following
Senators; if you live in one of the following
states, please make a special point of writing
to that Senator. If you do not live in any of
these states, the most important people to
write to are Senator Frist and Senator
Jeffords.
✒ James H. Jeffords (Vermont), Chairman
✒ Bill Frist (Tennessee), Subcomm. Chair.
✒ Judd Gregg (New Hampshire)
✒ Michael B. Enzi (Wyoming)
✒ Susan M. Collins (Maine)
✒ Sam Brownback (Kansas)
✒ Jeff Sessions (Alabama)
Thank you for helping to advance the battle
to conquer CFIDS by telling these Senators
of the need for increased attention,
accountability and support for CFIDS
research. As always, please contact The
CFIDS Association and let us know to
whom you wrote and what sort of response
you received.
A sample letter is included on the next page
which may be used or you can simply use it
as a guide for writing your own letter.
Advocacy continued on page 12...
ADVOCACY ALERT FROM
The CFIDS Association of America
Your Help is Needed! Get Senate Hearings on Federal CFIDS Research Problems
The Centers for Disease Control (CDC) has finally admitted wrongdoing and apologized for
mismanaging CFIDS research dollars and lying to Congress and the American people about it.
They have invited a dozen leading CFIDS advocates to attend a meeting on October 13 in
Atlanta—at the CDC’s expense—to discuss the problems and make amends. They have promised
that they will restore a portion of the missing funds over the next four years. And the General
Accounting Office (GAO) has initiated its own investigation into the problems with the
government’s CFIDS research program.
Are we satisfied? No. Here are some reasons why:
✘ The people responsible for the mismanagement of the funds and the CFIDS program itself are still
employed at CDC and still have control over the program.
✘ There has been no certain sign that CDC managers are taking CFIDS—as a debilitating illness
or an important public health concern—seriously.
✘ The Department of Health and Human Services, which is responsible for CDC, has not responded
to the Inspector General’s finding of mismanagement, except for repeating the CDC’s party line
that they’re sorry they made a mistake and they’re changing their accounting system to prevent
further problems.
✘ Outside of the situation at CDC, the National Institutes of Health (NIH) has its own history of
inattention to CFIDS research. Despite the generous increases Congress has given NIH in recent
years, CFS research funding actually decreased 11% from FY97 to FY98. The total NIH
investment in CFS research in FY98 was $6.4 million, hardly a drop in the bucket for an illness
which affects at least 500,000 American women, men and children
Clearly these problems are deserving of greater investigation and attention. For this reason, The
CFIDS Association is calling for a Senate Hearing to delve further into these issues and to bring
public attention to these serious issues. We have made our request in meetings with members of
the Senate Health, Education, Labor-Pensions (HELP) Committee, and many of them have been
very supportive of our call for a Hearing.
Others, however, are unconvinced. For example, the staff of Senator Bill Frist of Tennessee was
quite reluctant to add a CFIDS hearing to their subcommittee agenda. Senator Frist is the only
practicing physician in the Senate, and many other Senators look to him for direction on health
issues, so his opinion is very important to us. We need your help NOW!
Help us show that there is a clear and convincing need for the Senate HELP Committee to hold
a Hearing on the federal government’s management of CFIDS research and policy. We are
specifically interested in writing letters to Republican members of the HELP Committee, as they
were the most reluctant to schedule a Hearing on this issue.
What to do: A sample letter has been included below. You may use the letter as-is by doing the
following:
✒ Fill in the date and your name and address at the top of the page.
✒ Photocopy the letter (if you plan to send one to more than one of the Senators).
✒ Address your letter to one of the Senators listed below, as follows (they all have the same
mailing address):
The Honorable (full name)
United States Senate
Washington, DC 20510
✒ Put it in an envelope, affix postage and mail it directly to the Senator. Or, if you can, write
an original letter, as many Senators pay closer attention to individual letters rather than form
letters.
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 Advocacy . . . continued from page 11

The Honorable (full name)

United States Senate
Washington, DC 20510

Dear Senator (last name):

As you may be aware, last spring the Department of Health and Human Services’ Inspector General found that the Centers for Disease Control and
Prevention (CDC) had misdirected funds for Chronic Fatigue Syndrome (CFS) research and lied to Congress and the American people about it.
Although the CDC has apologized for its mismanagement of CFS funds and has stated that the funds will be restored to the CFS research program,
significant problems remain at CDC and other DHHS agencies.

✘ The people responsible for the diversion of funds from CFS into other programs remain in position at CDC and maintain control over the CFS program’s
operation.

✘ DHHS Secretary Donna Shalala has been virtually silent on the IG’s findings, as have other DHHS officials. Any response they have made is merely a
restatement of CDC’s letter of apology.

✘ There have been no assurances that DHHS is taking CFS seriously as a disabling illness or important public health concern, despite new data from CDC
which shows that more women have CFS than have lung cancer, HIV or AIDS.

✘ The National Institutes of Health (NIH) has not changed its long-standing indifference to CFS research. Despite the generous increases Congress has given
NIH in recent years, CFS research funding actually decreased 11% from FY97 to FY98. The total NIH investment in CFS research in FY98 was $6.4
million, just $12.80 for each of the 500,000 American women, men and children who have CFS.

The CFIDS Association of America, the nation’s leading organization working to conquer Chronic Fatigue and Immune Dysfunction Syndrome
(CFIDS), has tried to work with the federal health agencies to correct these problems, but has met with resistance and apathy from many of those
who are charged with protecting the nation’s health. The problems with the federal government’s CFS research program are grave and deserving of
increased scrutiny. A Hearing in the Health, Education, Labor and Pensions Committee on the federal government’s management of CFS research
would shed light on the problems and send a message to the federal health agencies that Congress is serious about its annual requests for increased
attention and research on CFS.

As one of at least 500,000 Americans with CFS who are depending on federal resources to help scientists to discover the cause, treatment, and cure
for CFS, I ask that you take my request seriously and schedule a Hearing this fall to examine the government’s attention to CFS research and policy.

Thank you for your consideration of this important matter. If you have any questions about the diversion of funds or any other CFS-related matter,
please contact Mary Beth Buchholz of The Sheridan Group at 202 462-7288.

Sincerely yours,

The CFIDS Association of America

Advocacy, Information, Research and Encouragement for the CFIDS Community

PO Box 220398, Charlotte NC 28222-0398

Voice Mail: 800/442-3437
Fax: 704/365-9755
WWW: http://www.cfids.org
General Email: info@cfids.org

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 October 1999 Table of Contents
TABLE OF CONTENTS .............................................................................................................................................................. 1
SKEPTICAL OF SKEPTICS: A DOCTOR WITH CFIDS SPEAKS OUT ................................................................................................ 1
MICHELLE AKERS: STILL KICKIN’.............................................................................................................................................. 1
FM STUDY IN CANADA ........................................................................................................................................................... 2
GAO INVESTIGATES CFS PROGRAMS ........................................................................................................................................ 2
NERVE GROWTH ..................................................................................................................................................................... 2
WHAT’S IN A NAME? ............................................................................................................................................................... 3
THE DFW LIGHTHOUSE CREDITS ........................................................................................................................................... 3
Katt’s World .......................................................................................................................................................................... 3
LET’S TALK! RECOVERY FROM CHRONIC FATIGUE SYNDROME ..................................................................................................... 4
FALSE CFS DEPICTION ............................................................................................................................................................ 4
MERCK MANUAL NOW LISTS CFS ........................................................................................................................................... 4
CFS & CHINESE MEDICINE .................................................................................................................................................... 5
MEMBERS’ ENGAGEMENT ......................................................................................................................................................... 5
PETITION FOR EXPANDED GAO INVESTIGATION ........................................................................................................................ 5
RESEARCH BREAKTHROUGH ...................................................................................................................................................... 5
INTERNATIONAL CFS CONFERENCES ......................................................................................................................................... 6
NEW FM DISABILITY TEST ..................................................................................................................................................... 6
CDC RETALIATION ................................................................................................................................................................. 6
TOXIC MERCURY ..................................................................................................................................................................... 6
MEETING TAPES ..................................................................................................................................................................... 6
MEDIA BITES .......................................................................................................................................................................... 6
NEW STAFF ............................................................................................................................................................................. 6
ORAL ALPHA INTERFERON ....................................................................................................................................................... 7
INTERNET RESOURCES ............................................................................................................................................................. 7
MONEY MATTERS! .................................................................................................................................................................. 7
DISABILITY RESOURCES ............................................................................................................................................................ 7
ONE TO ONE ......................................................................................................................................................................... 8
HMO REFORM ...................................................................................................................................................................... 8
CDC UPDATE ON CFS ........................................................................................................................................................... 8
STORIES & PHOTOS NEEDED ................................................................................................................................................... 8
SLEEP DISRUPTION .................................................................................................................................................................. 8
SPIRITUAL JOURNEYS ................................................................................................................................................................ 9
GATHERINGS ........................................................................................................................................................................... 9
UPCOMING MEETINGS ............................................................................................................................................................. 9
BRAIN FOG ............................................................................................................................................................................. 9
THE REST OF THE STORY ...................................................................................................................................................... 10
THANKS! .............................................................................................................................................................................. 10
FULL SPEAKER INFO .............................................................................................................................................................. 10
CHRONIC FATIGUE SYNDROME & FIBROMYALGIA SUPPORT GROUP OF DFW ............................................................................. 11
ADVOCACY ALERT FROM THE CFIDS ASSOCIATION OF AMERICA .............................................................................................. 11
SAMPLE ADVOCACY LETTER .................................................................................................................................................... 12

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