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The Northern Virginia (NOVA)
The Northern Virginia Chronic Fatigue Syndrome / M. E., Fibromyalgia, and Orthostatic Intolerance Support Group is an informal group that has been meeting in Fairfax County, VA, for over 20 years. Members discuss issues relating to CFS, FM, and chronic illness and healing in general. The group serves the DC area and beyond via this site and emails through a IO Group called CFSupport. Membership is free, open, casual. Northern Virginia is aka No. VA, NoVA, or Nova or NOVA and the group is aka CFSnova and NOVA CFSupport, where the CFS is CFS plus C for CFS, F for FMS, and S for similar Syndromes.
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Our members are people of all ages with chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivities, orthostatic intolerance, and related disorders, as well as family, friends, health care providers, researchers and legal advocates. The group has served more than two thousand people interested CFS/FM via phone calls, mailings and email. Discussion meeting size is usually about 10-20 people. Speaker meetings average a bit more, with the group hosting three speaker events that drew over 100 attendees - a very significant number since most who attend are very functionally limited.
The NOVA CFS/ME, FM, and OI Support Group moved to Chantilly, VA, in January 2009. See Sully directions. The group met at INOVA Fairfax Hospital from 1992-2005 and at the Mason Governmental Center in Annandale, VA, From April 2005 to December 2008.
Currently, regular monthly meetings are usually held on the 3rd Saturday of the month, from 2:00 pm until 4:00 pm, at the Sully Governmental Center, at 4900 Stonecroft Blvd in Chantilly, Virginia. About half of our meetings each year feature special speakers. The remaining meetings are usually general discussions for sharing our experiences with diagnosis, treatments, coping strategies, and approaches to healing. Check our events page for the schedule, for teleconferences, for special events.
In addition to our meetings and emails, The NoVA CFS/FMS Support Group collaborates with national organizations for special occasions. With The CFIDS Association of America, NoVA co-hosted the June 2005 kick-off kNOw More CFS Education and Empowerment Seminar in Reston, VA. Toni's opening remarks told about Elly, our group, and the value of support organizations. The event was written about in the Summer 2005 issue of The CFIDS Chronicle and the July 2005 CFIDSLink. In May 2006, with the National Fibromyalgia Association (NFA), NoVA staffed a booth at CVS Pharmacy in Chantilly,VA, giving out FM Aware magazines and product samples. Our group partners with the National Fibromyalgia Partnership (NFP) to get fibromyalgia educational materials to those who need them.
For excellence in service to the CFIDS community in the category of education, The Northern VA CFS Support Group, as we was known then, was given The CFIDS Support Network (CSN) ACTION Award in 1999. Our group leaders received CSN Champion Awards in 1999 and 2000. The group received a 1995 Community Action Education Award. All awards came from The CFIDS Association of America, Inc. Member Ira has earned our eternal thanks for e-moderating & designing/maintaining our website, 1999-2006.
Our group used to operates in concert with two subgroups, now only one. The Northern VA MVPS/D & OI Support Group, aka The Art of Healing Dysautonomia with Gratitude and Friends group has been folded into the other two. The second group is Elly's Gratitude Group (EGG) for people with CFS, FM, OI, POTS, Long Covid, etc. EGG meets occasionally by phone conference and occasionally in DC area locations. EGG's interactive e-mail list for practicing gratitude is EGGdish.
Group members often discuss overlapping including
Reviews of our group, emails, and website:
"I've been to the support group meetings chaired by Elly and would highly recommend anyone struggling with CFS/FMS attend one of her meetings, that I found to be emotional balm for the soul as well as an excellent resource for connecting with others like myself." - Jill, 10-2010
"About that website, I have gotten more help there so far, than any doctor of the past 4 1/2 years. I know nothing about what I am dealing with, and it seems that I have used an awful lot of energy to have only gained a diagnosis and a brick wall from the professionals? It's difficult for me to move forward until I get more knowledge of what to expect and how to cope. I don't know what to tell my kids. I will continue to pour over your long hard work and get the awareness I need. Thanks again!" - Diane, 11-09
"BTW, everyone that contacts me about joining our group I also tell them all about your group and highly recommend that they join your email list even if they think they cannot go to the meetings because your info is so good. ... I recommend that they join both of them." - Vicki
"One of the best support group web sites you're going to find. A great example of how a local group can also reach out to a larger audience." - Brett Hodges, Founder of RemedyFind
"I just wanted to let you know how much I appreciate your e-mails...Although I have moved out of the area I continue to be blessed by your e-mails... You do such an excellent job -- your support group emails must be one of the best if not the best in the nation. You have many 'encouraging words', latest tips,news,etc.-- I can tell you put a lot of hard work into it...plus the personal touch with real warmth, caring and a sense of fellowship comes through...Thank you!! Blessings to you!" - KM
"First, let me thank-you for introducing me to your fabulously informed CFS/FM world (websites, meetings, publications, etc.)!! I had a great time talking with other members at the '3rd Sat meeting' last month and am really looking forward to the next one."- Kerryn, 06/2006
"I just wanted to thank you sooooooooooo much for all you do for the cfs support group. It's been a tough year for me and just getting your e-mails has helped me so much. Things have a strange way of working out but maybe this was your calling because you are just such an inspiration with your spirit, knowledge, and hopefulness. Thank you for being you!!!" - JD
"Thank you very much for your perspective and information at the July and August support meetings. While I am new to the Saturday meetings just want you to know how much your support and counsel has helped and how much I am learning in a short period of time." - Heather, 2006
"I've seen so many specialists in the last seven months, trying to get a diagnosis. I learned more from you than and gotten more help than from all of that in my first call to the group. Its been life changing. Thank you!" - Debbie in VA, 8/30/2006
"CFS Support Group of Northern Virginia has an email newsletter which you can subscribe to regardless of where you live, that frequently contains useful information. In the area of Northern Virginia and Southern Maryland, this organization also has support groups specifically on the topics of mitral valve prolapse syndrome and orthostatic intolerance, which are very common in people with CFIDS" - <! Sick Chicks and Twisted Sisters: Empowering Disabled Women on the Web <!.
"Elly, please help me update my email address.
"There are several support sites for assistance and aid. ... The following is a list of support groups which we feel are worthwhile." The Northern Virginia CFS/FMS Support group [cfsnova.com] was listed second. - CFS Corner
"I can't say enough about how much I appreciate all that you do. I follow your group from a far. I live in Austria! I am here 8 more months and then back to DC. I think your focus on gratitude is very good. And I live off of your resource and info..." - Elizabeth, 12/06
About CFS Nova Facilitators
Elly Brosius and Barbara Bell have the life experience of several of the conditions and symptoms discussed on this website dedicated to people with chronic fatigue syndrome, orthostatic intolerance and dysautonomia, and unexplained chronic pain, widespread or localized. While they have been each been advocates, media liaisons, research subjects, and students of research and treatments, their passion is as support contacts, listening and guiding similarly affected people in finding their own paths to feeling better, or at least, coping or functioning better in the presence of debilitating symptoms.
Their volunteering is adapted around the severity, unpredictability and variability of symptoms. Brosius and Toni Marshall, a leader until her sudden passing in 2016, have participated in CFS and dysautonomia research, attended CFS/FM and Orthostatic Intolerance conferences, advocated at CFIDS Lobby Days, and contributed articles to The CFIDS Chronicle. In the 'Living With CFIDS' column of the Winter 2002 issue, they jointly authored, "Inclined to Recline: Our tips for managing orthostatic intolerance." With Toni's eggcellent editing, Elly was published in the Summer/Fall 2006 Pain Connection Newsletter with "EGGing Each Other On - Incitement to Insight." Both Marshall and Bell have testified before the CFS Advisory Committee to the Secretary of Health. All serve as moderator / facilitators on conference calls and e-mail lists.
Elly Brosius attended her first meeting of the NOVA group in July 1992 and
became a volunteer leader in April 1993. She has been on medical disability with CFS, POTS, and NMH since early 1992. Applying all her skills as a scientist and researcher with the drive to get better, Elly joined national organizations, reading and contributing to their journals. She went for the usual tests and many very unusual ones, most of which led to important, if only minor, relief from symptoms. She poured over medical journals and she participated in research at Johns Hopkins University, Georgetown University, and with clinicians doing private research. Elly contributed to the support group growing and adapting via an email list and speaker meetings. While at the same time navigating the health care system and limited options for her own case, she shared what she learned at meetings and newsletters, and she continued connecting people with resources.
While always working closely an internist and also nutritionist Sam Makoul, Elly also sought help and knowledge from other medical traditions including Tibetan Medicine, Ayurveda, and Native American Medicine. Each offered her a little more insight and improvement, ultimately preparing her for more steps into the mind-body-spirit medicine. She
began to study and apply more self help techniques, especially those relating to attitude. She used writing as a tool for healing. She sought to understand the value and relationship to health of self-acceptance, of trust, of really listening to one's body. Books by and wisdom from people who recovered from illness for which there is no official cure made a huge impact. These, along with prescription Chinese Herbal formulas, have been key in her being able to reduce and then stop medications and supplements she once so relied on just to function a little, and for the recent expansion of her activities while experiencing more joy and sense of well-being.
See photographs of Elly in the CFSupport Photo Gallery.
Web Links and Timeline for Elly Brosius, MS: