from our EMAILS and NEWSLETTERS
CFSCC State of Science Meeting held in VA
Dr. Cheney - CFS - The Big Picture
Mold and Allergies
Next CFIDS/FM Self-Help Course
Qi Gong Massager
"I Remember Me" Documentary Update
Wash. Post Article on Myofascial Pain
Warning Issued on IBS Drug Lotronex
Nominations for CSN Awards
Efamol and the Importance of Fatty Acids
Michelle Akers Retires
Part time work ideas for PWCs
CFS Bookstore on our Site
Keith Jarrett Interviewed
Comments Martin Lerner's Research
Summaries of August and September Meetings
Bell and Streeten on Orthostatic Tachycardia
Autoimmune and Autonomic Problems Linked
"Focus on the Family" CFS Radio Broadcasts
American Association for People with Disabilities
Isoprinosine Treatment for CFS / Pilot Study
STATE of the SCIENCE CONFERENCE
Chronic Fatigue Syndrome Coordinating Committee (CFSCC) State of the
Science Conference was held in Rosslyn, VA, on October 23 and 24, 2000.
Speakers included David S. Bell, MD, FAAP, Nancy Klimas, MD, and Dedra
S. Buchwald, MD. Many of our group's members were able to attend and we
look forward to their reports in future emails.
CHENEY - CFS - THE BIG PICTURE
transcript of an address from 2000 the about the three phases of CFIDS
by Dr. Paul Cheney is available in Message 185 of our yahoo group's
Phase I Viral Induced RNaseL Activity.
Phase II Xenobiotic Toxicity: a) gut, b) teeth/jaw, c) environment.
Phase III Hypothalamic Injury Induced Dynamic Hormone Response Deficits.
Phase III DNA Gene Rearrangements.
[For more recent information by Paul R. Cheney, MD, PhD's work on CFS, see the DVD
CFS: The Heart of the Matter - 2006 Cheney Seminar DVD
Weekend did another great article about how sick mold can make you.
This one was about "Mold in Schools: a health alert". A December '99 one called MOLD: A Health Alert was
the home. Both are found at www.usaweekend.com with other health articles. The scholl one has "10
things you must know about mold" and more. There are agencies listed
for more help. "Some molds produce airborne
toxins which can cause chronic fatigue, loss of balance and memory,
irritability, and difficulty speaking." Other symptoms include
headaches, chronic sinus problems, and coughing. If you also have
dysautonomia (variable blood pressure, heart rate, etc.) you can
experience a worsening of those symptoms due to the histimine release
of allergy to mold. Several members in our group have allergies to
mold. One gets headaches and vomits, one ends up in shock and in the
E/R, and others have different reactions. If you have CFS and
allergies, you treating the allergies, can really help your CFS, too! Avoidance of the
allergens, taking anti-histimines that do not agravate your dysautonmia regularly, and careful planning with your allergies can really help
your allergy AND CFS symptoms. Yes, it is another big mystery chronic
illness and you are already overwhelmed. I know, me too.
Weekend comes with the Washington Times. -Elly
CFIDS/Fibromyalgia Self-Help course is now accepting signups for its
next quarterly class. The course is an eight-session, solution-oriented
email discussion group that focuses on practical strategies for
improving quality of life and, where possible, increasing chances for
recovery. The discussion centers on sharing techniques that group
members have found helpful in coping with common problems of CFIDS and
fibromyalgia. The course is based on similar self-help programs for
arthritis and other chronic diseases developed at Stanford University.
We have offered the course more
than 50 times to a total of over 500 people (as of March 2002). The course has been
featured twice in the "CFIDS Chronicle." For information, see our web
site at: http://cfidsselfhelp.org .
I got a new
therapuetic instrument for this summer: a low (so low it can't be
heard) frequency sound generator that doubles as a massager. The
sound waves penetrate your tissues even when it is held a few inches
away so it is great for sensitive types. The frequencies it uses are in
the 8-14 Hz (cycles per second).
Because it has to vibrate to make the speaker move there is also a
mechanical motion to it to that I enjoy. The product is called the
Infratonic QGM (qi gong massager) and is FDA listed which means
insurance may pay.
Those frequencies are in the alpha wave range of your brain waves - the
relaxed waves as you drift off to sleep. They are also in the
range of organ (lungs, heart, liver etc.) resonances and part of the
way some feel that we are refreshed during sleep is that the brain
waves cycle through those low frequences to "massage" the organs at
different times during the night.
When I use the massager, I do feel my mood/mind being entrained to an
alpha state. It is very calming. And being the nervous anxious type in
general, I find this more conducive for health.
I learned about it by reading a free paper newsletter (online, too) by CHI
is dedicated to energy medicine and reporting experiences with the QGM.
I readnewsletter for two years before I was ready to try it. So I
especially those who are interested in chi, qi gong, energy medicine
would want to get the infomation, too. (800) 743-5608.
I can't go to a massage therapist and get too much benefit. The driving
to and fro, my sensitivities, etc. make it unfeasible. So this has been
wonderful for me. I can do 1 minute here or there and only put it where
it feels good. And it still helps. It helps me with spasms, tension,
falling back to sleep when I wake up. It also seems to be making me
overall more tired which I take as a good sign because healing does
require energy and one of the things it does is help detoxify tissues.
My latest tissue analysis (I have had 20 done since 1993) shows me
dumping mercury much more than usual. AND it shows my adrenal ratio has
come out of the burnout side for the first time.
The newsletter this time asks if any experience with Fibromyalgia and
the QGM. The doctor's response, "This is a tremendous therapy. The QGM
energy allows the muscle cells to relax. FM is a very difficult
disease, it occurs in a lot of areas of the body. The standard
diagnosis identifies 18 key trigger points to determine who has this
disease. With the QGM we help 11 of the 18. This therapy has very broad
effectiveness. The more my patients use it the better the results. I
apply the machine all around affected areas. Most spots are the neck
and shoulders. I move the unit all around the affected area so it is
healing all at once, and not just one area. I have found the unit also
takes away fluid in every location where I try it."
Moving fluid?! we like that!
Much of CHI's work with the QGM has been with horses and I enjoy
reading about that side of it in the newsletter. And nobody has to
bring up the placebo effect then. Well, the horse just runs better and
doesn't limp anymore because he needed you to believe in him. HA!
CHI also estimates 2% of doctors use it in their practices now. I asked
if any in our area and they thought Dr. Tran (acupunture, VA) and Dr.
Wisneski (301-493-8444, internal medicine/ endocrinology/acupunture) in
area had purchased them. Both are on our practitioners list .
I purchased a $695 model (-$100 med discount due to disability)
with an Intel chaos chip that more closely can produce the acoustic
emmanations of a healing qi gong master's hands. The
earlier models have healing benefits, but less dramatic as the new
model or so the marketing literature says. Being a physicist with a masters in acoustics (still somewhat rare)
really attracted me to playing with this type of treament. I find it modestly helpful. -Elly
REMEMBER ME" DOCUMENTARY FILM - WE NEED YOUR HELP
From Kim A. Snyder Producer/Director: After
four long years in the making as my health has allowed, the CFS
documentary "I Remember Me" is almost complete. The 74- minute film
presents a collective story of the CFS experience including a diverse
range of characters from Olympic soccer star Michelle Akers, to film
director Blake Edwards, to Connecticut teenager Stephen Paganetti
bedridden for over three years. The film is also a medical mystery
designed to shed light upon some of the many issues of the CFS riddle.
At a recent rough cut screening at the NJ CFSA, the response was
emotional and extremely positive. The good news: the film has been
invited to premiere at the Hamptons International Film Festval October
11-15 in East Hampton, NY (for more info call 631-324-4600) and at the
Denver International Film Festival October 12-21 (info. 303-595-3456).
This means the film will receive press and will reach general public
audiences and is a first step toward securing television broadcast
distribution. It is likely there will be other festivals as well in the
coming months. The bad news: we have raised 90% of the budget but are
still missing the final funds required to transfer the piece from video
to film required for festival screenings and associated post-production
costs. It is urgent we do so in the next few weeks or we may not be
able to screen it. WE NEED YOUR HELP URGENTLY... Any amount can help.
Please help to complete a project that we hope will raise awareness
about this horrible disease and help restore a sense of dignity in the
community. Donations are tax-deductible and can be made to the CFIDS
Assoc. of America at 6827-A Fairview Rd. Charlotte, NC 28210 earmarked
for I Remember Me. Thank you so much for your ongoing support.
DVD at Amazon (2001)
Video at Amazon (2002)
Great Roger Ebert Review
POST ARTICLE ON MYOFASCIAL PAIN
of Choice by Kathleen F. Phalen
Special to The Washington Post. Tuesday, August 29, 2000 ; Z18
(Link no longer works, removed.) Kathleen Phalen is now
Kathleen Phalen Tomaselli and she still writes for the Wash Post Health Section. - 05/06
ISSUED ON IBS DRUG LOTRONEX
http://www.fda.gov/cder/drug/infopage/lotronex/lotronex.htm (<--Page updated in 2005.)
FDA, August 24, 2000. The Food and
Drug Administration (FDA) today announced the development of a
Medication Guide (FDA-approved patient labeling) to help ensure that
women using the prescription drug Lotronex (alosetron hydrochloride)
for treatment of the diarrhea-predominant form of irritable bowel
syndrome (IBS) will understand the rare but serious risks of Lotronex
and how they can recognize those risks and take early action to prevent
serious harm. These risks include complications from constipation and
the risk of ischemic colitis, a serious complication caused by reduced
blood flow to the intestines.
FOR CSN AWARDS
Support Network (CSN) Group Leaders have the opportunity to nominate
people or groups for outstanding service to persons with CFS (PWCs).
Our group and I have won 3 awards since 1995. Other years, I
nominated Dr Wallace and Nutitionist Sam Makoul and both received
Champion awards. I probably nominated Dr. Rowe as
well some year.
This year I have sent in 3 nominations: Dr. Pocinki for medical
professional, Mitch Lambros for other (maybe they should have an
attorney catagory!), and Toni M. for best newcomer SGLeader. If anyone
would like to further their hopes for recognition, send a note via
email or on paper to the CFIDS association explaining how these folks
have helped you. Make it elaborate or simple. Simple is probably best
as it might get done then. For more, cfids.org.
If there is anyone else to nominate, let me know & be
willing to help describe why. -Elly
those finding Efamol products helpful, Larry recommended mailorder from
Added 05/06: Look for EFAMOL's Page: The Importance of Fatty Acids
As I write this, I am
watching the women's soccer USA vs China on MSNBC at the moment. It is
almost over and tied at 1. At half time, a nice piece about Michelle
Akers was aired. Thanks Kim, Jo, Jan and others for sending articles about Akers.
Thanks to Michelle Akers for speaking so candidly and often about her CFS! -Elly
- "U.S. Soccer On the Record: Akers on retirement" 8/25/2000
"Michelle has battled disease that you are all aware of
[Chronic Fatigue Syndrome]. When it was first diagnosed there was
little known about it. It's still a disease that's an enigma to us
today. She approached that illness in the same way, as a warrior, as
she played on the soccer field.... She is a very dedicated athlete,
...[or] she would not have been able to play with this chronic illness.
... her entire lifestyle has revolved around living with this
disease and learning how to play with it. She's unbelievable.... We've
tried many, many medications in an attempt to understand this illness,
but really it's a combination of her dedication and her lifestyle
that's let her play for so long."
- "U.S. Soccer: A farewell that marks the end of an era" 9/5/2000
reaggravation of a longstanding shoulder injury, combined with the
constant effects of chronic fatigue immune dysfunction syndrome
(CFIDS), convinced the 34-year-old midfielder and her doctors that the
time to quit had come."
- "Soccer's Shooting Star" 09/04/2000. Mentions CFS.
"Her doctors say it
is remarkable the 34-year-old lasted this long. Akers suffers from
chronic fatigue syndrome. "It's hard to figure out how she recovered
from the lows she'd reach," says her longtime coach, Tony DiCicco. She
was often in agony after a match, exhausted and unable to eat. That is
why, beginning at the 1996 Olympics, her teammates would find her lying
on the locker room floor, an IV dangling above."
TIME WORK IDEAS FOR PWC'S
Fran in response to a question about the availability of part time work
Consider job sharing (splitting the job between 2
people), and telecommuting (as long as the already have
a computer, e-mail and fax set up). With telecommuting, the place of
employment, may not be as crucial since it allows for
flexibility especially with call forwarding capabilities.
You may want to contact Steve Nissen, MS, CRC, Director of Operation Job Match (OJM) Program at the National Capital Chapter of the National MS Society. OJM (202- 887-0136) establishes alliances with
private sector employers who are willing to hire persons with
disabilities. From what I understand they utilize reasonable
accomodations like telecommuting. The MS Society is located at 2021 K
St in Washington DC. Phones: 202-296-5363, 1-800 FIGHT MS. Ask for a copy of the brochure on
Operation Job Match.
The Virginia Dept of Vocational Rehab might have some leads. I have handouts from the Maryland State Agencies which list
numerous web sites for job searches for people with disabilities (too
many to list here)!
The PCEPD (the Presidents Committee for Employement of People with
Disabilities) at the Dept of Labor used to post job openinings in both
the Federal and private sectors.
PCEPD, 1331 F Street NW, Suite 300; Washington, DC 20004. (202) 376-6200 - Fran
05/06 Update: No current PCEPD link, but phone still listed to them at the Dept of Labor: www.dol.gov. DOL also an Office of Disability Employment Policy that may inspire ideas.
The Job Accommodation Network.
The AAPD Employment Opportunity Page (See second to last item this newsetter page.)
BOOKSTORE ON OUR WEBSITE
have been many updates on our website recently. Among
them is our new online bookstore. You can buy books directly through
our site (via Amazon.com), or just take a look for suggestions for
books to borrow from your local library. If you have books
that you would like added to our list, send your suggestions.
To browse through our CFSupport Bookstore, go to home page http://www.geocities.com/cfsnova/ and click on
"Books & Videos".
September 11, 2000, Terry Gross, host of National Public Radio's
Fresh Air, interviewed jazz great Keith Jarrett. He talks about his
music, and how chronic fatigue syndrome has forced him to change his
approach to playing. He has a new CD called Whisper Not.
listen to the interview in Real Audio format, go to:
To view a
transcript of the interview, see: http://www.immunesupport.com/articles/2000_09/2811.cfm
a summary of new sources about the jazz musician, Keith Jarrett, diagnosed with
CFIDS, who is being treated with antibiotics and feels he is 70%
recovered. Roger Burns, editor of CFS-NEWS Electronic Newsletter, (http://www.cfs-news.org/jarrett.htm) provides us with click on
web sites for more information about Keith Jarrett: his diagnosis is
chlamydia pneumoniae. Chlamydia Pneumoniae is, as
described in a Salt Lake Tribune article from 07/10/1999 by Norma Wagner, a contagious microbe nearly as common as
the cold, causing respiratory infections such as bronchitis, sinusitis
and pneumonia. It is suspected of being spread
through coughing and sneezing. It is treated long term with
azithromycin. It has been found in the plaque of heart disease patients
and is being studied as such through an NIH grant to LDS Hospital and
other hospitals nationwide.
The use of magnets in therapy is
attracting a lot more attention these days as continuing research
proves magnetic fields do have an effect on the body. Here's what WholeHealthMD says about magnet therapy.
list member Ariel M wrote in to tell us that she has found magnet
therapy to be very helpful, and has used a Nikken mattress, pillow,
necklace, shoe inserts, and an Infrared blanket and knee wrap. She is
now a Nikken distributor, and can be contacted at: Ariel M,
Resumes & More!, 919-B East Market Street, Charlottesville, VA
22902, 804-296-1777 (phone), 804-296-1231 (fax), firstname.lastname@example.org.
There are other Nikken distributers in the group as well.
COMMENTS ON DR.
MARTIN LERNER'S RESEARCH
popular press had several recent articles regarding Dr. Martin Lerner's
theory that CFS may be a virally induced cardiomyopathy.
these articles was:
"New Theory Emerges on Fatigue Ailment"
Wall Street Journal 9/19/00
Technology & Health by Scott Hensley
One of the MDs on our list commented to us that "there has been
extensive discussion in the medical community about Dr. Lerner's work
and it is important for you and the group to know that while indeed he
may have the reason for some people developing chronic fatigue, CFS is
by definition unexplained chronic fatigue and those people with
cardiomyopathy due to viruses are few and I doubt that more than 0.5%
of patients diagnosed as having CFS really have virally induced
cardiomyopathy. If anyone has a concern, they should check with an
Infectious Disease person...their blood tests (antibody titers) should
indicate whether CMV is active."
also wrote in to tell us "I felt I should weigh in because I believe
I'm the only N. VA. group member who is on Lerner's program. I'm on it
because my he's my cousin's doctor ... and her EB count has gone way
down since on Valtrex. Unfortunately, she also has MS, and it hasn't
helped her condition at all. Also, please note in the WSJ article that
Lerner has PATENTS on everything he's doing -- I believe that is why he
was in the WSJ. ... Lerner is a kind and sympathetic doctor (I went to
Detroit from Virginia to see him), and I think he's really trying to help, but [the
MD's comments to our list] are important."
OF AUGUST 2000 GROUP MEETING
August NOVA CFS meeting found attendees reading out loud and discussing
the latest article written about Dr. David Bell, who, with Dr. David
Streeten, has done fascinating research in New York, concerning the large number of CFS patients found to have low blood
volume, and/or low red blood cell mass. For CFS patients with neurally mediated hypotension (NMH), or
other Orthostatic Intolerance such as POTS, low blood volume is a probable cause or contributing factor.
Knowledge of this condition provides opportunities for self awareness
and self care beyond extra salt and water consumption.
especially appreciate Dr. Bell's total validation of the disabling
symptoms of CFS, as well as his citing the various methods of
establishing a CFS/Dysautonomia/Low Blood Volume diagnosis, further
validating the frustrations of CFS patients with doctors who find
nothing "wrong" with us.
- Toni Marshall, Facilitator
OF SEPTEMBER 2000 GROUP MEETING
September meeting was an open discussion of participants' past and
current drug treatments including antidepressants, Klonopin, Ambien,
and others, with varying results for different people. There was
discussion of various participants' extreme sensitivities to drugs and
other substances, including gluten and dairy, leading to another
discussion of Dr. Bell's and Dr. Streeten's findings of low blood
volume in CFS patients as it relates to concentrations of substances in
bodies of 75%, 50%, or even less blood volume. A fellow NOVA CFS member
has recently been found to have less than 50% blood volume.
what it is like to be so deficient in necessary body fluids/blood
volume. One lacks normal insulation, hydration, robbing one of
protection: from pain, say, in a bump against bed casters; from
imbalances of nutrients as blood moves either so slowly, or just
doesn't arrive at the optimum moment for cells to be nourished; from
imbalance upon standing, as blood moves with gravity from one's head,
but there's not enough to share from one's head; from heat, as blood
moves to the skin to cool the body, leaving not nearly enough fluids to
keep all the systems relying on them to operate normally. Does any of
this feel familiar? Can you think of other ways we're unprotected as a
result of low blood volume?
BELL AND STREETEN STUDY ON ORTHOSTATIC TACHYARDIA
recent study by Drs. Bell and Streeten is "The roles of orthostatic
hypotension, orthostatic tachycardia, and subnormal erythrocyte volume
in the pathogenesis of the chronic fatigue syndrome", Am J Med Sci 2000
Jul;320(1):1-8. The abstract of the article is available online at http://listserv.nodak.edu/scripts/wa.exe?A2=ind0007D&L=co-cure&P=R2090 .
excellent and detailed article about the study is on the Lisa Lorden's
About.com site. The article is entitled "No Other Illness Like This
One: Dr. Bell Finds Dramatic Abnormalities in CFIDS", by Joan S.
Livingston, About.com columnist, 7/26/00. We sent out the full text of
this in August and Octorber 5 in Message #231, and you can also view it in a nicer format in the Files Section of our CFSupport at Yahoo site. About.com no longer has it archived.
always, if you need the full text of any link emailed (or
remailed) to you, let us know. If you have web access, you can
view and search the archives of all of our past announcements at http://health.groups.yahoo.com/group/CFSupport/messages.
LINKING AUTOIMMUNE AND AUTONOMIC PROBLEMS
article was published in the New England Journal of Medicine Sept 21,
2000 linking autoimmune and autonomic problems. Fascinating. Vol 343
pages 847-855 - "Autoantibodies to Ganglionic Acetylcholine Receptors
in Autoimmune Autonomic Neuropathies" by Steven Vernino, MD PhD;
Phillip A Low MD, Fealey, Stewart, Farrugia, and Lennon. A summary is
online at: http://content.nejm.org/cgi/content/short/343/12/847
it is very technical, the main points come through. The team seems to
have found a serum antibody marker for severity of autonomic problems.
One of the autonomic monitoring tests used was a sweat test. (As do Dr. Khurana's patients!) So when a patient was having
worse symptoms, visible by more inappropriate sweating, the antibody
counts were higher.
treatment implication may have to do with gamma globulin and a paper
entitled "Post Infectious pan dysautonomia with complete recovery after
immunoglobulin therapy" Neurology 1998; 51:1764 was referenced. But it
is too early to say and gamma globulin is tough to get right now. But
a very interesting development.....
free reprint, write to Dr. Vernino at Dept of Neurology, Mayo Clinic,
200 First Street SW, Rochester MN 55905 or email him with the request
ON THE FAMILY" CFS BROADCASTS
on the Family," a nationally syndicated Christian
radio show with Dr. James Dobson, had a
three-part series on CFIDS on October 16, 17 and 18. Each
part is about 30 minutes in length and features a
physician expert and panel of three patients. It is heard on close to
3,000 stations across the nation,The three-day program featured three
PWCs, including CFIDS Association member Linda McCulloch who worked hard at getting this media attention.
ASSN FOR PEOPLE WITH DISABILITIES
American Association for People with Disabilities September 2000
Newsletter reminds us of the importance of the disabled vote. (Archived newsletters start online in 2001.) It tells
of SSA's proposed rule for making substantial gainful activity
automatically adjust each year. It tells of the SSA
plans for work incentives. The newsletter has a
petition to keep supporting the ADA. It reminds us that low income
folks may get at least $5.50 off their local telephone bill using LifeLine. To check if qualify, see Universal Service Program for Low-Income Consumers at FCC.gov
AAPD is working to provide a career
center within the AAPD website at www.aapd-dc.org and here it is: The AAPD Employment Opportunity Page.
IMPROVEMENT IN CFS ASSOCIATED WITH ENHANCED NK CELL MEDIATED
A paper by Byron Hyde, MD, and others reports on a pilot study of
isoprinosine treatment of CFS patients: "Chronic fatigue syndrome (CFS)
is associated with several immune abnormalities such as decreased
natural killer (NK) cell mediated cytotoxicity and dysregulated
production of cytokines. We evaluated the clinical impact of
Isoprinosine (immunomodulator / antiviral) on various immune functions
in a total of 16 CFS patients diagnosed according to the CDC CFS
definition. Patients were followed for 28 weeks. Clinical improvement
based on the clinical staging was observed in 5 out of 10 patients
(50%). CFS patients at baseline compared to normal controls exhibited a
significantly decreased NK activity as well as decreased
mitogen-induced production of IL-10, IL-12 and IFN- in PBMC. The
clinically improved patients showed a significant increase in CD4+ T
cell numbers (p 6\scriptsize] which correlated with the duration of the
treatment (p , IL-2, IL-10 and IFN- production in clinically improved patients. These results suggest the clinical
efficacy of Isoprinosine and its potential to enhance NK cell activity.
In view of the small number of patients, further studies are required
to investigate the contribution of Isoprinosine-mediated immune effects
to the pathogenesis of CFS." For
more, visit The Nightingale Research
Foundation: http://www.nightingale.ca/ .