| CFS DISCOUNT BOOKS |
Newsletter  |
NEWS ABOUT OUR AREAS OF EXPERTISE
For several years I put out a newsletter bringing together the latest news items in the field of health. What I have planned for this web page is something similar, but it will be tidbits captured off the internet and will also include the subjects of personal growth and history.
The page is starting small but as I run across something online that is particularly important I will post it here.
And if you have anything that you run across that you think should be posted email it to me and I'll see about including it.
Together we can make this a really important page.
Leslie Barns, editor
One of the hardest places for someone without severe chemical sensitivities to go is to church since this is often where people put on the most cologne and wear the most dry cleaned clothes. After much hard work some chemically sensitive people have managed to convince a few churces to give equal access to worship to them and others with these problems.
Here are a few that I know of. If you know of any others or need more info. on these email me and I will add them to the list.
First Baptist Church--downtown Houston, Texas.
St. Luke's United Methodist Church--Little Rock, Arkansas.
EPA has set up an 800 number to take comments from the public on the
proposed updates to the health standards. The number is 1-888-TellEPA
(1-888-835-5372).
Rules For Being Human
1. You will learn lessons. You are enrolled in a full-time school called, "Life on planet Earth". Every person or incident is your teacher.
2. There are no mistakes - only lessons. "Failures" are the stepping stones to "success". We need to make mistakes in order to move forward.
3. A lesson is repeated untill learned. It is presented in various forms untill you learn it. If you are here, there are still more lessons to be learned.
4. If you don't learn the easy lessons, they get harder! Pain is an outstanding teacher and one way the Universe gets your attention.
5. You know you've learned a lesson when your actions change. Only action can transform knowledge into wisdom. "Learning" is remembering what you already know at a deeper level. "Doing" is the demonstration that you know it.
6. "There" is no better than "here". When "there" becomes "here," you'll notice another "there" that again looks better that "here."
7. There is no right or wrong - but there are consequences. The Universe never judges us, it only gives opportunities to ballance, learn, and enjoy.
8. Your life is up to you. Life provides the canvas, you do the painting. Make your own original, don't copy someone else’s painting.
9. Your answers lie inside you. All you need to do is look, listen, trust and act accordingly. Learn the difference between your inner mind chatter, and your deep Inner Voice.
10. You'll tend to forget all of this.
11. You can remember this any time you wish.
These "rules" have been around for ages. No one knows who wrote them. With gratitude, we acknowledge the source and pass them on. Please feel free to do the same.
There is a movement going on to rename Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS, also known as CFS) to something more accurate. There are dozens of very official sounding names being brought forth, but some individuals can't help but see the humorous side to whatever they are going through--even something as devastating as CFIDS.
In that vein we present some of the not-so-serious names that certain PWC's (Persons With CFIDS) have suggested.
*RIP VAN WINKLES DISEASE
*Chronic Devastation Disease
*F*cked Body Syndrome
*Dementia, Asthenia, Myalgia, Neurologic Dysfunction,
Immune Abnormalities, Toxic Reactivity...(Otherwise known
as DAMN IT! syndrome...)
Found on AOL.
AACFS report from Dr. Charles Lapp
Date: 10-20-96
Captured From: AOL
-----------------
Forwarded Message:
Subj: AACFS report from Dr. Charles Lapp
From: cfs-news@cais.cais.com (Roger Burns)
Subj: AACFS Conference Section: Research/News
To: All Monday, October 14, 1996 2:27:06 AM
AACFS Conference -- Reported by Charles W. Lapp, MD
The AACFS Research & Clinical Conference got underway
at 1 PM today in San
Francisco. Today's topics were Epidemiology and
Microbiology & Immunology.
Dr.Stephen Straus (NIH / NIAID) spoke first, and
discussed several aspects of
current therapy including antivirals, IV gamma globulin,
and Cognitive
Behavioural Therapy. He did describe a recent study
concerning the use of
cortisone in PWCs. Based on Demitrack's demonstration of
mild hypocortisolism,
Straus treated 35 patients with low dose cortisone at
16mg daily for 12 weeks.
Side effects were limited to increased appetite, loss or
gain of weight, mild
sleep disruption, and increased urination. 54% of placebo
treated subjects
improved (about 1.5 arbitrary points) and 67% of treated
subjects improved
(about 4 points). Thus, there was some mild improvement
in the patients. Sadly,
testing revealed that even these minor doses of cortisone
suppressed the adrenal
glands. It was concluded that even small doses of
cortisone are not safely
prescribed in CFS.
Andrew Lloyd, MD, of Prince Henry Hospitsal, NSW,
Australia eloquently described
some of the difficulties in studying CFS. He is currently
prospectively
studying three viral illnesses (EBV, Ross River Fever,
and Q Fever) that he
suspects may trigger CFS.
James Dobbins and Lea Steele presented more data from the
CDC Surveillance Study
and the San Francisco study respectively. Dobbins
concluded that the incidence
of chronic fatigue was 8.7 per 100,000 and that the
incidence of CFS was 2.7 per
100,000 in the 12-17 yo age group. Thus much lower rates
were seen than with
adults (up to 200/100K). Steeles study concluded from a
community telephone
survey in San Francisco that Blacks and Native Americans
have a higher odds
ratio of contracting CFS-like illness than whites, and
Asians had a lower odds
ratio; the odds ratio(risk of contracting the illness) is
just slightly higher
for clerical and healthcare workers than most other
occupations; and CFS-like
illnesses occur in all socio-economic groups. She found
no evidence of
clustering in families, thus it would seem less likely
that CFS-like illness is
catchy or even hereditary. [NB: it is my recollection
from the 3 city
surveillance study that there was a 10-15% concurrence of
cases in a family. So
if one member of a family had CFS, the chance of another
in the family was
10-15%].
Dr.Theresa Whiteside (Immunologic Monitoring Lab at Univ
of Pittsburgh Cancer
Institute) provided an excellent but highly detailed
overeview of natural killer
cell function in CFS. Briefly summarized (which is both
difficult and unfair!),
low NK cell activity (NKCA) is one of the most reliable
and repeatable features
of CFS, but has no correlation with severity or outcome,
and can be seen in
other illnesses (cancer, AIDS, LNKS, etc) as well. She
postulated that there may
be a link between NK cells and the brain, as activated NK
cells produce
cytokines and can directly damage brain cells.
Dr. Levys CFS Study Group reported that suppressor cells
(CD8/11b) are
decreased, and cytotoxic cells are increased (CD8/CD28)
in CFIDS, which is old
news, but then went on to demonstrate that the cytotoxic
cells clearly lyse more
target cells in PWCs compared to controls. They used a
new cytometric technique
(CD69 populations) to demonstrate this.
Dr.Klimas concluded from recent studies that PWCs showed
a slight increase in
TNF alpha and for Type 2 (humoral) cytokines such as IL5
and IL10. This
suggests that CFS is more of a humoral or autoimmune type
illness than a
cellular response to a trigger agent.
Finally, Dr. Bob Suhadolnik provided more convincing
evidence of marked
up-regulation of the RNase L antiviral pathway in CFS.
The normal level of
RNaseL is approximately 50 (+/- 50), whereas 11 of 13
cases studied from the
Lake Tahoe epidemic had levels at or above 500! This is
clear evidence that CFS
is an organic illness, and the explanation of this
phenomenon may lead to
greater understanding of the illness.
That is it from the front. I will try to keep you all
posted as the session
proceeds.
Charles W. Lapp, MD
HUNTER-HOPKINS CENTER in Charlotte, North Carolina
*********************************************
Monday, October 14, 1996
San Francisco, CA
The AACFS Research Conference began today with a
comprehensive and interesting
summary of Multiple Chemical Sensitivities by Dr. Iris
Bell of the University of
Arizona. Some interesting facts emerged: about 60% of
persons with CFS and FM
react to exhaust, cigarette smole, gas, paint, and
solvent; 90% of MCS and
40-70% of chemically sensitive have food and drug
reactions; and MCS sufferers
share many symptoms in common with CFS/FM including
rhinitis, candidiasis,
dysmenorrhea, depression, arthritis, irritsble bowel,
anxiety and migraine.
Predisposing factors may include heredity, female gender,
shyness, increased
sugar intake (craving), and left handedness!
Unfortunately, the best
management of chemically sensitive individulas is
avoidance, although Asian
Ginseng is thought to block the development of chemical
sensitivity to morphine
(and possibly other agents).
There were two papers on Tilt Table Testing today.
Dr.DeBecker and her group
in Brussels could demonstrate only minor changes in
autonomic function with
tilting, notably an increase in heart rate. Lapp reported
on TTT in 71 patients
from a private practice in Charlotte. NMH was seen in 24%
of cases, no response
in 48%, and 28% of subjects demonstrated Symptomatic
Orthostatic Tachycardia
(SOTS, or rapid heart rate and severe symptoms). About
50% of patients with NMH
and 35% of those with SOTS improved with salt and water,
Florinef, and beta
blocker or disopyramide. This is in contrast to the
Hopkins study that
reported 70% incidence of NMH, no SOTS, and 76%
improvement with standard
therapy.
The Collaborative Pain Research Units reported 2 studies
on the urinary marker,
CFSUM1, in CFS.
85% of CFS patients had increased CFSUM1 (a pyrrolidine
compound) and alanine,
while 46-75% of controls had (smaller amounts) of the
compounds. in urine. Both
compounds correlated positively with symptoms (fever,
lymhadenopathy, fatigue,
sore throat, urinary infection). The authors suggest that
this association may
form a mol;ecular basis for developing an objective test
for CFS.
John LaManca, MD, of Nastelsons CFS Cooperative Research
Center, demonstrated
that maximal exercise on a treadmill clearly causes
cognitive dysfunction on
PWCs, and Dr. Racciatti (Italy) found no v change in the
circadian rhythm (bodys
internal clock) based on neuro-endocrine studies of
prolactin, TSH, ACTH, and
cortisol.
Dr. John Gow (UK) described chronic organophosphate
(pesticide) toxicity in the
UK, and its similarity to CFS, including flu-like
symptoms at onset, normal lab
studies, fatigue, myalgia, sleep disturbance, sweating
episodes, depression,
poor concentration and memory, and some dizziness. Like
CFS, victims of
organophosphate poisoning have abnormal rssponses to
buspirone and
pyridostigmine (increases in prolactin and growth
hormone, respectively), and GH
responses to dexamethasone challenges.
The afternoon was marked by an elegant presentation of
Cognitive Behavior
Therapy by Dr. Michael Sharpe of the UK. Despite recent
adversive press
reports from British Medical Groups, Dr. Sharpe reassured
us that he views CFS
as a physical illness. He dwcribed a randomized,
controlled study of 60 PWCs,
3w0 of whom underwent CBT and 30 of whom received routine
(that is, none)
medical care. At least 73% of subjects felt that there
illness was mainly
physical or that symptoms were caused by a virus, and
most coped withv their
illness by avoiding activity. Dr. Sharpe implied that
these were adversive
behaviors. With CBT (basically doctor-patient
collaboration, setting treatment
goals, increased activity, decreased avlidance behavior,
problem solving, and
changing adversive thoughts and beliefs), 47% of the CBT
subjects improved at 8
mos, and 60% were improved after 12 months. The control
grouyp showed little
improvement over 12 months. A strong positive predictor
for improvement was
good pre-illness function (ie, healthier!) and a negative
predfictor was
depression or anxiety. At another British hospital,
relaxation therapy alone
improved 70% of subjects. This suggests that most any
positive intervention may
help. Dr.Sharpes concluded that the active component of
therapy was a mental
reframing of rhe illness. That is,developing a positive
attitude, increasing
activity, and accepting the illness.
Finally, Dr. Tony Komaroff (Harvard) described increased
risk of galactorrhea,
polycystic ovaries, endometriosis, uterine fibroids, and
ovarian cysts in 149
PWCs compared to 150 healthy controls. And Dr. M. Tavio
of Aviano, Italy,
described decreased glucose utilization (ie, blood flow)
in the brainstem of
patients with cfs, and finding that has nevere been
observed in depressed
patients.
Thats it from San Francisco. We aqre all looking forward
to the Clinical
Sessions tomorrow and Wednesday.
Wish you were here!
Charles W. Lapp, MD
HUNTER-HOPKINS CENTER
Charlotte, NC
Subj: AACFS Conference
-Day 3 Section: Research/News
**********
San Francisco, CA
October 15, 1996
Todays Clinical Conference was basically a series of
treatises, and cannot be
summarized well. For example, Dr. Janice Kiecolt-Glaser
discussed the
psychological influence on immuno-endocrine interactions,
Keiji Fukuda described
how a case definition was derived for Gulf War Illness,
and Peter Rowe discussed
various aspects of tilt table testing.
Fukuda concluded that Gulf War Syndrome is a real disease
characterized by
fatigue, decreased concentration, moodiness, sleep
disorder, stiff and sore
joints --- very much like CFS, and possibly dharing a
common pathogenesis. The
disease is mostly seen in veterans deployed to the
Persian Gulf, but can be seen
in non-deployed individuals. The risk of illness is
slightly increased with age
and female gender. Like CFS, the physical exam is quite
unrevealing except that
GWS has a higher incidence of (various, non-specific)
rashes. Of over 3900 Gulf
War subjects evaluated by the CDC, 8 of the cases were
thought to have CFIDS.
Dr. Rowe described the tilt table findings of his
September 1995 paper, and made
several interesting points. He has re-tested 6 subjects
after treatment, and 5
of them had negative TT tests, suggesting that treatment
really does help. He
pointed out that when routine management (salt, water,
Florinef, and adrenergic
blockade) fail, that vasoconstrictors (ephedrine,
theophylline, dexadrine,
Ritalin, mididrine) or SSRIs (Prozac, Zoloft) may be
helpful. And he shared a
report by Smit and Weiling showing that crossing the legs
while standing,
squatting, or sitting in a very low chair all increase BP
and may reduce
symptoms of NMH. He admitted that other researchers are
getting different
results, and quoted Dr.Schondorf as recording 9 of 21 CFS
subjects as having
orthostatic tachycardia. He discussed several possible
mechanisms as the cause
of NMH, and indicated that his group will be looking into
those mechanisms.
Dr.Dick Bruno of the Kessler Institute in New Jersey, did
a wonderful job
discussing similarities between post polio syndrome and
CFS. In a nutshell,
persons who contracted polio decades ago are showing CFS-
like symptoms, and
autopsy material has demonstrated lesions in the
reticular formation, substantia
nigra, paraventricular nucleus, and other brainstem or
mid brain structures.
These lesions are sufficient to explain the impaired
attention and information
processing; UBOs on MRI scans; blunted cortisol response
to ACTH stimulation
(HPA axis suppression); increased prolactin levels; and
slow EEG waves seen in
PPS, but also seen in CFS. Thus, these disorders might
also share a common
pathogenesis. Dr. Bruno has hypothesized that dopamine
agonists may improve
symptoms in PPS victims, and pilot studies are already
underway.
Drs.Klonoff, Lloyd, Mierlier, Klimas, and Lapp discussed
various aspects of
management of CFS patients. Most stressed the importance
of managing depression
and anxiety, treating allergies when present, ruling out
obscure medical
problems and infections. It was stressed that patients
should take annual
examinations (particularly pap smears, mammograms, and
tests for occult bowel
cancer), manage elevated cholesrerol if present, and
beware of possible bone
loss (osteoporosis) due to decrease activity. Dr.Meirlier
described his
treatment of 23 PWCs with Ampligen in his Brussels
clinic. Most appear to be
doing well (Karnofsky scores increased 20-30 points,
exercise ability extended),
and side effects have been virtually absent. He is
planning to treat 30
patients before releasing a final report.
Drs.David Bell and Jim Jones discussed CFS in
adolescents. Once again, Dr.
Jones insisted that CFS in adolescents resolves within 2
years, which generated
considerable disagreement among the attendees.
Lastly, Dr.Linda Iger, Sue Ann Sisto, Gloria Furst, and
Donald Uslan discussed
rehabilitation strategies. Dr. Iger briefly covered some
strategies for
cognitive restructuring, and suggested several techniques
for improving memory
and concentration, such as limiting comncentration time
to 20 minutes, using a
study carreau, and avoiding distraction. Sue Ann Sisto
gave very specific
physical therapy recommendations, including posture
training, deep breathing
exercises, and a gentle progressive exercise program. She
recommended 3 sets of
12 repetitions with no (or low) weight, 1-2 minutes of
aerobic exercise, and
gentle anti-gravity exercises of the trunk, hips, and
knees. Ms. Sisto suggests
that duration of exercise should be increased first, then
intensity, and one
should progress no faster than weekly.
On the administrative front, Dr. Dedra Buchwald has been
elected president of
the AACFS, Dr. Ablashi is now treasurer, and Dr.Levine
secretary.
Thats all the news thats fit to print!
Charles W. Lapp, MD
HUNTER-HOPKINS CENTER
Charlotte, NC
For more information try the Allergy Info. Center at http://kww.com/allergy/
Order Form
Be sure and visit our book categories including Healthy Living, Food & Diet, Self-Help/Personal Growth, History and our Autographed Copies Section.
And our newest pages: SAMPLES, SAMPLE CHAPTERS, NEWS, HEALTHY RECIPES AND ABOUT US.
If you bookmark this page be sure and press reload when you return if your browser is set to take pages out of its cache.
Leave us your email address and message if you have something you think should be posted.