SELECTIONS From Our EMAILS and NEWSLETTERS
October 2003
Pain Relief: Edited Excerpt's from a Member's Letter on Hopeful Device
Resources & Links
Speakers
Dr. De Meirleir on CFS
Quotes
Les Simpson & Red Blood Cell Research Update
Biography: Margaret A. Chesney, PhD
A Personal Empowerment StudyVideo on Dysautonomia/OI
CFS Advisory Committee (CFSAC)
Support Group Current Affairs
Introduction
Welcome to CFSupport Group News! To receive all of our emails and newsletters, please join our email list and Yahoo!
group at http://groups.yahoo.com/group/CFSupport.
As a member of our CFSupport Yahoo group, you would be able to browse
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CFS/M.E., fibromyalgia, and related illnesses. We keep the number of emails to less than one per day on average.
Pain Relief: Edited Excerpt's from a Member's Letter on Hopeful Device
Dear Elly, I surely couldn't type this long for YEARS! I am trying a new
apparatus for pain relief. Other than fentanyl patches (which are 75
times STRONGER than morphine) this is the FIRST time in 16 years that I
have had ANY real relief... and this was Instantaneous and with NO drugs
involved. I have not been able to sleep an entire night yet... but I
have had several hours of uninterrupted sleep..which was very rare
before. The inventor is David Phillips, PhD, whose office is near
Baltimore, and his site is www.rebuildermedical.com. It could help
people with non-restorative sleep from restless leg syndrome, FMS,
Diabetes and from various neuropathies. With his little electrodes and
a 9 volt battery, one puts some colloidal silver and epsom salts into a
warm water bath... and you put your feet in and turn on the transistor
and it gently massages your calves and sucks the magnesium and calcium
from the salts bath back into the nerve endings at the end of your feet
and sends the mineral rich blood back up to the heart by pumping your
calf muscle almost involuntarily... this does NOT lead to the lactic acid
build up that would have occurred if we tried to EXERCISE our way back
to health. He says the process should be done for about 8 to 10 weeks
about twice a day... and then slowly wean down to two or three times per
week. Members whose pain is more like burning and numb, rather than
"achy", and those with restless leg syndrome at night, would probably
experience the best results.. He has a 60 day money back guarantee. IF
anyone purchases (and keeps) a unit, please mention that RESCIND, Inc.
sent you and we'll get a donation. (888) 820-5100.
$999.
[Insurance coverage a possibility.]
The ReBuilder® is a small, hand held FDA approved medical device
specifically designed to relieve pain, reduce numbness, and increase
circulation.
Resources & Links
See Shopping Page more links
Vitacost.com (800) 793-2601 for wholesale prices on your favorite brands.
Gaines.com (800) 830-7139 is
a place that has Chinese Herbs (Healthy Concerns Brand) hard to find
elsewhere. Sales. Lots of brands available.
BumbleBars.com - good organic snack bar with no dairy, wheat, or soy.
Vitamins + More. A good discount, does special orders,
and carries Trace Nutrients. (703) 787-0700. Near Kmart in Herndon.
Peapod.com, Giant's home grocery delivery.
Soothsoft.com Cool Pad: Like cold for muscles? Use the Chillow Pillow!
Also a large one for Pets. (888) 244-5569.
Canine-Caterers.com (703) 922-PETS. Ask for a sample! Dog food delivered to your door!
Healthy Paws Vet
Rebecca Verna of Haymarket, VA, (703) 754-4146, is a great holistic vet
who didn't roll her eyes when I brought up the topic of Pets with CFS.
She knew something about CFS already, and was willing to work with me
and my dog on it when I brought this up based on the research of
Italian Veterinary Surgeon Walter Tarello. Dr. Tarello's research is
listed on Medline and also http://www.anapsid.org/cnd/pets/cfspets.html
Speakers
Saturday October 18 - Natural Healing: Patricia Ann Hellinger from Montana
A facilitator of Natural healings and author of the book Hiatal Hernia and CFS.
She will describe how she works and will ask for volunteers.
Speaker Saturday Nov 1 - Kenny De Meirleir, MD, PhD of Belgium
Special Night Meeting at Different Location.
6:30 pm, INOVA Alexandria Hospital Auditorium
Current Research and Treatment of CFS and is Acclydine a Therapeutic for CFS?
For information on acclydine, search our email archives which has an abstract about Acclydine and/or see the meeting handout
Information Regarding ACCLYDINE & The 14-Week Protocol
There is no admission charge, no registration. Dr. de Meirleir has been
studying CFS since 1990 and is familiar with its history, research, and
some current treatments. His latest research is on an OTC
treatment called Acclydine for those with CFS and low growth hormone.
At this time, there are about 45 medical papers by him in my medline
search that include some on autonomic dysfunction in CFS, exercise
intolerance, and immune abnormalities. Dr. De Meirleir is also speaking
to the New Jersey CFS Association on Sunday Nov 2 in their day 12-5
pm conference. $25, http://www.njcfsa.org (973) 635-4361
To order a 2 hour audio tape set of an April
30, 2002, radio interview with Dr. De Meirleir for $12.75 total, call
Radio Liberty (800) 544-8927 or print a form at
http://www.radioliberty.com/apr02.htm
November 15 (Regular 3rd Sat Meeting Fairfax Hospital, EEC5, 2-4 PM)
NIH Deputy Director of
National Center for Complementary and Alternative Medicine
Margaret Chesney, PhD ( http://nccam.nih.gov)
Dr. De Meirleir on CFS
The 2 hour audio tape of an interview with Dr. De Meirleir on a radio program
mentioned above (from April 30, 2002; $12.75 total, Radio Liberty -
(800) 544-8927 ) covered several topics. Dr. De Meirleir's lecture to
us on Nov 1 to our group at INOVA Alexandria Hospital in Alexandria,
VA, might not cover all of these, but there will be time for Q&A,
so you might want to have some questions prepared.
The topics covered in the radio interview program are
exercise (can cause significant relapse;
if capacity below a certain level, one is dependent on others)
immune system dysregulation preceding CFS
farmers having organophosphates as trigger
toxins including paint and pesticides as triggers
subgroups of CFS patients
treatments:
olive Leaf extract, vitamin C, echinacea, B12 to block NO activity
NO - nitric oxide - too high in some (cold hands & feet, very sick,
pain, low BP, cognitive problems);
too low in others (never get flu, more like MS,
lymph nodes, sore throat, no pain);
or bouncing back and forth in some patients
too many platelets
RNase L;
Ampligen - the immune modulator; apoptosis - accelerated cell death -
toxins
mycoplasma - could be primary or secondary infection
the importance of a good history by your doctor
Pets - if immune compromised you can catch your pets diseases
alcohol intolerance should be added to the symptom list -
alcohol inhibits sodium/potassium pump in cells.
The pump is already under
severe stress in this disorder
CFS is an old disease, not a new one.
Primary FM is
due to sleep deprivation and the resulting brain chemistry changes.
Secondary FM is a lowering of the pain threshold with pain all over
Patients need general and specialist doctors;
they and their caregivers need validation and empathy.
Symptom of
uninhibited aggression , unexplained anger, can be tough on family.
Mood swings are
common as dopamine and serotonin fluctuate; treating sleep can help.
80% of CFS
patients have acid reflux to due NO relaxation of smooth muscle.
Stomach emptying
can take 3 times longer, increasing acid and peristalsis and
food allergies.
New Canadian
clinical case definition (see next item) lists more diagnostic markers
including protein kinase, Alpha TNF, NK cells, NO,
and RNaseL
Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome:
Clinical Working Case Definition, Diagnostic and Treatment Protocols (Online PDF)
Journal of Chronic Fatigue Syndrome: 1057-3321 Volume: 11 Issue: 1 (Special Issue)
Copyright Year: 2003
Page Range: 7 - 115
(800) HAWORTH to order.
Journal of CFS at Haworth
Quotes
Every day doctors have to deal with people who are worn out and unable
to stand up to the life they lead. They generally assert that it is
impossible to alter the way they live, and sincerely believe that their
overwork is the product of circumstance, whereas it is bound up with
their own intimate problems. It is ambition, fear of the future, love
of money, jealousy, or social injustice that makes men strive and
overwork, invent all sorts of unnecessary tasks, keep late hours, take
too little sleep, take insufficient holidays, or use their holidays
badly. Their minds are overtense, so that at night they cannot sleep
and by day they doubly fatigue themselves at their work. -- Paul Tournier, M.D.
Gratitude unlocks the fullness of life. It turns what we have into
enough, and more. It turns denial into acceptance, chaos to order,
confusion to clarity. It can turn a meal into a feast, a house into a
home, a stranger into a friend. Gratitude makes sense of our past,
brings peace for today, and creates a vision for tomorrow. -- Melody Beattie, Author
Les Simpson & Red Blood Cell Research Update
We have been unable to
obtain financial support and because I have exhausted my own financial
resources, it is necessary to cease trading. While this is a
disappointing outcome, from the letters of appreciation which we have
received it is good to know that many people who suffered from chronic
disorders have been helped. But I view with some trepidation the
implications of current research in ME/CFS and the relevance of such
programmes to the wellbeing of sufferers. If you wish to get in touch
with me please note that my new address at home will be
leslie.simpson@... . [If anyone has the new address, please send to us.
We've misplaced it in a computer upgrade and yahoo blocks the rest. ]
With best wishes to you all,
Sincerely,
Les Simpson and Dylan O'Neill.
Red Blood Cell Research Limited
31 Bath Street, Dunedin, New Zealand. 9001.
Phone: +6434718540
Fax: +6434718530
E-mail: rbc.research.limited@...
Web page: www.geocities.com/redbloodcellresearch
Biography: Margaret A. Chesney, PhD, November 15 Speaker
Margaret A. Chesney, Ph.D., is NCCAM's first Deputy Director and leads
the Center's Division of Extramural Research and Training. Dr. Chesney
partners with NCCAM's Director in planning, directing, and managing the
programs and resources of the Center. She helps formulate, guide, and
oversee the management of all NCCAM-funded extramural centers,
investigator-initiated research, research contracts, fellowships, and
training and career awards.
Throughout her career, Dr. Chesney has designed and conducted original
research on the relationship between behavior and chronic illness, and
on behavioral factors in clinical trials, including issues of
recruitment, adherence, and retention. She also worked on the
development and evaluation of psychosocial and behavioral interventions
for health promotion, illness prevention, and treatment.
An author and coauthor of over 240 scholarly research papers and
publications, Dr. Chesney is Associate Editor of Psychology, Health and
Medicine and serves on a number of editorial boards, including those
for Psychosomatic Medicine, the British Journal of Health Psychology,
and the Journal of Acquired Immune Deficiency Syndromes.
A Personal Empowerment Study
Dear Support Group: I am
conducting a research study as requirement for the doctoral degree in
nursing. The main goal of this dissertation is the development of a
valid and reliable measure of patient's level of empowerment while
living with a chronic health condition. The questionnaire is be posted
through the Form Site™which
ensures saving the collected data in secured files on their
server until retrieved by the researcher. The questionnaire is composed
of 60 items intended to measure patient empowerment. Personal
information will be kept confidential and participants will not be
identified by coding the questionnaires and then destroying them upon
completion of the study. There is no apparent harm associated with
completing the questionnaire. Participants have the right to quit the
study at any time when they feel uncomfortable or unable to
continue. The principal investigator of this project Dr. Carolyn
D'Avanzo who can be reached at phone # (860) 486-0540, University of Connecticut School of Nursing. If you have any questions concerning the
rights of patients as research participants, you may contact the
University of Connecticut Institutional Review Board (IRB) at (860)
486-8802. An IRB is a group of people that reviews research studies and
protects the rights of people involved in research. The link is:
http://fs10.formsite.com/empowerment/form832048769/index.html
Project
Director
Ismat Mikky, BSN, MSN, PhDc, RN
Doctoral nursing student, University of Connecticut School of Nursing
Results:
Ismat Mikky, PhD
April, 2006
Development of the Client Empowerment Scale (CES)
Video on Dysautonomia/OI
The Dysautonomia Youth Network Association's 2003 Summer event video is
available for $25 incl. shipping. It is 10 times better than last
year's. Mail check or money order to
Full Zoom Productions, 5650 W Central Ave STE E, Toledo OH 43615.
Excellent for the newly diagnosed.
http://www.dynakids.org
(301) 705-6995
info@dynakids.org
CFS Advisory Committee (CFSAC)
The Department of Health and Human Services (DHHS) has recently been
contacting nominees to the CFS Advisory Committee (CFSAC) in
preparation for the committee's first meeting. No date yet. The CFIDS
Association is hopeful that this committee will help fill the void in
coordination of federal activities and oversight of agency CFS programs
that has occurred since the preceding CFS Coordinating Committee met
last in January 2001. To learn more http://www.cfids.org/advocacy/c-act_12102002.asp and join the CFIDS Association!! They work very hard for PWCs!
(704) 365-2343 $35/yr.
Get updates about the CFSAC from the free newsletter CFIDSLink.
Support Group Current Affairs
Petty Cash
Elly's checking account for the group previously had no minimum. Now
there will be a stiff monthly fee unless we keep it above $750. Elly is
willing to tie up her money to get the balance to the $750
minimum, but that means we can never use that base amount. Anything you
can contribute now will help us keep that account. If we need to, we'll
go back to keeping the funds in a shoe box, but it is nice be able to
write a check to the group and having the group write checks for
postage or books or copying. Thank you and thanks to all who have
already pitched in.
FYI: To do a single newsletter mailing to all on our list would be
$300; a post card reminder about $80. Just copies for a meeting
can be $40.
Our E-mail Outreach
The Northern VA CFS/FMS Support Group has an announcement group named
CFSupport at Yahoogroups.com. Nearly very page on this website
will take you to it by clicking on the subscribe link. Use that trick
even if you are already a member to get the the page to sign in.
To receive our e-mails from our leaders regarding events and more, use
the "Subcribe" link and click on "Join this Group" OR send an e-mail to
the subscribe address below and then you'll have to confirm and follow
instructions later. E-mails are archived on the yahoo groups site for
your viewing, but you'll need to be a Yahoo member (free). Archives are
great for new members wanting to catch up or for regulars who need to
look up something. You can send clear, thoughtful, brief inquiries to
list owners and request they be forwarded to the entire group at
leaders' discretion.
Subscribe:
CFSupport-subscribe@yahoogroups.com
(not case sensitive)
Unsubscribe:
CFSupport-UNsubscribe@yahoogroups.com
Contact Owners:
CFSupport-owner@yahoogroups.com
Elly, Ira, and Toni
Newsletters come out on a sporadic schedule. E-mails of it are sent to CFSupport.
Paper newsletters show up at meetings.
Contact us by phone:
(410) 647-7578 Toni Marshall &
(703) 968-9818 Elly Brosius
About Us: This informal group is comprised of persons with CFS and
related syndromes. We are information focused and rely on volunteers
and non tax-deductible donations. We discuss symptoms, coping,
treatments, but we do not dispense medical advice. See a qualified
professional for care. See our About Us page for more.
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