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October 2003

Pain Relief: Edited Excerpt's from a Member's Letter on Hopeful Device
Resources & Links
Dr. De Meirleir on CFS
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


Welcome to CFSupport Group News! To receive all of our emails and newsletters, please join our email list and Yahoo! group at

As a member of our CFSupport Yahoo group, you would be able to browse and search our archives, use our Calendar of local and national groups, download files, use our rideshare database as well as receive current updates of interest regarding 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 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.

[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 (800) 793-2601 for wholesale prices on your favorite brands. (800) 830-7139 is a place that has Chinese Herbs (Healthy Concerns Brand) hard to find elsewhere. Sales. Lots of brands available. - 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., Giant's home grocery delivery. Cool Pad: Like cold for muscles? Use the Chillow Pillow!
          Also a large one for Pets. (888) 244-5569. (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


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,   (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

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  (

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


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,  
Les Simpson and Dylan O'Neill.

               Red Blood Cell Research Limited
               31 Bath Street,     Dunedin, New Zealand. 9001. Phone: +6434718540
               Fax: +6434718530          E-mail:
               Web page:

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:

          Project Director                           Ismat Mikky, BSN, MSN, PhDc, RN  
          Doctoral nursing student, University of Connecticut School of Nursing

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.
(301) 705-6995

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  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 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:                    (not case sensitive)
     Contact Owners:              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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Updated February 25, 2007