The Northern Virginia
CFS/FMS
Support Group

SELECTIONS from our EMAILS and NEWSLETTERS

October 2000

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
Magnet Therapy
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

CFSCC STATE of the SCIENCE CONFERENCE

The 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.

http://orwh.od.nih.gov/state-of-science.pdf

DR. CHENEY - CFS - THE BIG PICTURE

A 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 email list archives.
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.
http://health.groups.yahoo.com/group/CFSupport/message/185

[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
http://www.dfwcfids.org/videos/video200609cheney_about.shtml ]

MOLD AND ALLERGIES

USA 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.
PS: USA Weekend comes with the Washington Times. -Elly

CFIDS/FM SELF-HELP COURSE

The 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 .

QI GONG MASSAGER

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 Institute that 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 thought you, 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 our 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

"I 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. 

Added 05/06:
http://www.irememberme.com
DVD at Amazon (2001)
Video at Amazon (2002)
Great Roger Ebert Review

WASH. POST ARTICLE ON MYOFASCIAL PAIN

Treatment 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

WARNING ISSUED ON IBS DRUG LOTRONEX

http://www.fda.gov/cder/drug/infopage/lotronex/lotronex.htm  (<--Page updated in 2005.)

NOMINATIONS FOR CSN AWARDS

CFIDS 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

EFAMOL

For those finding Efamol products helpful, Larry recommended mailorder from Drugstore.com
Added 05/06: Look for EFAMOL's Page: The Importance of Fatty Acids

MICHELLE AKERS

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
  http://www.socceramerica.com/article.asp?Art_ID=52890
  "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
  http://www.socceramerica.com/article.asp?Art_ID=52924
  "The 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.
  http://www.usnews.com/usnews/politics/whispers/articles/000904/archive_013147.htm
  "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."
  
  
  Updated 05/06
  

PART TIME WORK IDEAS FOR PWC'S

From Fran in response to a question about the availability of part time work for PWCs:

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.

Other ideas:
The Job Accommodation Network. 
The AAPD Employment Opportunity Page (See second to last item this newsetter page.)
-Elly

CFS BOOKSTORE ON OUR WEBSITE

There 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://geocities.datacellar.net/cfsnova/ and click on "Books & Videos".

KEITH JARRETT

On 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.

To listen to the interview in Real Audio format, go to:
http://whyy.org/cgi-bin/FAshowretrieve.cgi?2965  

To view a transcript of the interview, see: http://www.immunesupport.com/articles/2000_09/2811.cfm

Here's 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.

MAGNET THERAPY

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.

Email 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), ariel@resumesandmore.com.

There are other Nikken distributers in the group as well.

Updated 05/06.

COMMENTS ON DR. MARTIN LERNER'S RESEARCH

The popular press had several recent articles regarding Dr. Martin Lerner's theory that CFS may be a virally induced cardiomyopathy.

Among these articles was:
"New Theory Emerges on Fatigue Ailment"
Wall Street Journal  9/19/00
Technology & Health by Scott Hensley
http://listserv.nodak.edu/scripts/wa.exe?A2=ind0009C&L=co-cure&P=R1178&D=0

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."

Nina 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."

SUMMARY OF AUGUST 2000 GROUP MEETING

The 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.

I 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

SUMMARY OF SEPTEMBER 2000 GROUP MEETING

The 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.

Imagine 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?

Toni

DRS BELL AND STREETEN STUDY ON ORTHOSTATIC TACHYARDIA

The 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 .

An 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.

As 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.

ARTICLE LINKING AUTOIMMUNE AND AUTONOMIC PROBLEMS

An 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

While 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.

A 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.....

For a 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 at verns@mayo.edu.

"FOCUS ON THE FAMILY" CFS BROADCASTS

"Focus 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.

AMERICAN ASSN FOR PEOPLE WITH DISABILITIES

The 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.

 Updated 05/06.

ISOPRINOSINE TREATMENT:
CLINICAL IMPROVEMENT IN CFS ASSOCIATED WITH ENHANCED NK CELL MEDIATED CYTOTOXICITY

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/ .