CFSupport

The Northern Virginia (NOVA)
CFS/ME, FMS, and OI
Support Group
 
Art of Healing Dysautonomia Group

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The Art of Healing Dysautonomia with  Gratitude and Friends Group


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About Us

The Art of Healing Dysautonomia with Gratitude and Friends Group is a name change for the Northern Virginia MVP Sydrome / Dysautonomia & Orthostatic Intolerance Support Group which had been meeting the 2nd Tuesday of each month, 12-2 p.m. since the early 1990s, first in Reston, VA, then in Centreville, VA, and since Sept 2008 by telephone conference call. Starting October 2015, the conference calls will be the 3rd Wednesday of the month, from 3-4 pm. To receive the telephone number and access code for the calls, please sign up for the Yahoo group mvps-d_oi_nova or call (numbers below) or email the facilitators.

The group started in 1992 in Reston, VA, founded by Dr. Jackson, MD, and a patient. It met at Reston Hospital until 2001. Elly Brosius joined the group in 1994 after a dysautonomia diagnosis from a Tilt Table Test study for CFS at Johns Hopkins. She assumed leadership of the group in 1997. While meetings are now by national teleconference, we are grateful to Reston Hospital's About Health magazine for continuing to list them. Elly added a Yahoo! Health Group called MVPS-D_OI_nova to reach members near and far via email, and to provide links and files.


Check the Events page for specific dates or cancellations, special events. For any in person special events, we ask attendees to please refrain from wearing scented products.

Teleconferences are the 2nd Wed of each month at 3 pm Eastern.
Teleconference Meeting Facilitators: Elly Brosius, Toni Marshall
Email Moderators: Elly, Toni
Email address: mvsp-d_oi_nova-owner@yahoogroups.com (reaches moderators)
Telephone:  Elly, 703-968-9818; Toni, 410-647-7578.

Elly Brosius is also the facilitator and webmaster for The NOVA Chronic Fatigue Syndrome/ ME, Fibromyalgia Syndrome, and OI Support Group - the main subject of this  website.

We also have information about the Maryland Bay Area OI, CFS, & FM Group

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Orthostatic Intolerance / Dysautonomia Resources & Articles


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Finding Support Groups
Newest Books & Video
Other Websites for OI / Dysautonomia / MVP Syndrome
In the Media: Orthostatic Intolerance & MVPS/D

  • Mystery disease unraveled by Stanford neurologist Inside Stanford Medicine - 10-8-13
    "They don't feel rested. They're completely drained. The inner balance is completely derailed."

  • The Principal Is Back  East Hampton Star - 1-31-13
    "'I was treated for nine weeks for Lyme with strong antibiotics,' he said. Then, “two independent infectious disease specialists that work on Lyme determined that I never had Lyme. Those antibiotics made me very ill and why I was feeling sick wasn’t being addressed. I was frustrated because I wasn’t getting better.' 'More follow-up with doctors is still required,' he said, 'but they strongly believe I have an orthostatic intolerance. It can cause an increase in heart rate and it affects my blood pressure and I can get symptoms.' Following his new diagnosis, Dr. Soriano said that he is now taking a beta blocker, a prescription medication that helps to regulate and control an individual’s heart rate."
  • Nausea, dizziness, weight loss, headaches, vomiting:
    These symptoms sometimes add up to POTS
    Postural Orthostatic Tachycardia Syndrome is no fun      Pittsburgh Post Gazzette - 1-30-12
    "It is a chronic disorder where patients feel unwell more acutely when upright and feel somewhat better when they're lying down and where the problem is not primarily a drop in their blood pressure when they're upright, but rather an excessive increase in their heart rate." - Satish Raj
  • Yellow Sub: Greg resurfaces  smh.com.au - 1-21-12
    In his autobiography, Greg Page wrote about the worst time of his life: handing over his yellow skivvy and leaving what he calls Wiggle World in 2006. Beset by his mystery "vaguing out" illness, dealing with the fallout of a failed marriage and facing the loss of a lucrative 16-year career, Page wrote it was "a terrible time of my life".
  • Original Yellow Wiggle Greg Page rejoins the Australian band after 5 years away due to illness  Washington Post - 1-17-12
    The Yellow Wiggle is back. The original lead singer of the world-famous preschool entertainment band The Wiggles has made a surprise return, five years after he left the group because of illness.
    A rare nervous system disorder, dysautonomia, forced Page to retire in 2006.
  • Miracle Horse Allows Woman to Give Back  Utica Observer-Dispatch, John Pitarresi - 8-16-11
    A year ago, Andrea Piazza could barely walk. Now, thanks to The Root Farm and horse named Stella, she’s running. … And Piazza does have a disability – Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia., which refers to diseases of the autonomic nervous system. She began having symptoms five years ago, and was diagnosed about a year ago.
    “Every time I stand up, I get a little dizzy,” Piazza said. “It’s hard for me to walk. My brain couldn’t keep with my body. Sometimes I would pass out.” …
    Piazza doesn’t know if she ever will be cured – “Some doctors say yes, some say no,” she said – she is grateful for the great strides she has made.
    “I didn’t think the horses were going to do anything,” she said. “I did it to try it, and they definitely proved me wrong. It ended up being miraculous. I don’t think there is a word that I can choose. It’s beyond words what they’ve done for me. I had given up hope of every being able to walk again. I don’t know what I’d be doing if it wasn’t for her (Stella).”
  • Migraines, memory loss: Was it all in his head? Medical Mystery, Washington Post -  2-16-10
    By 2007 Adam began complaining of intermittent dizziness and a headache, particularly when he got out of bed in the morning. The neurologist thought he might be showing signs of a condition called POTS -- postural orthostatic tachycardia syndrome -- an imbalance of the autonomic nervous system, which controls blood flow to various parts of the body. POTS patients have impaired circulation, and the disorder is characterized by a rapid rise in heart rate and a drop in blood pressure upon standing.

    The cause of POTS, which is not well understood, is unknown. The condition typically occurs in females between 15 and 50, sometimes after a pregnancy, trauma or viral illness, according to the National Institutes of Health. POTS patients often faint, but Adam did not. And a key diagnostic test for POTS called a tilt-table test -- it involves strapping a patient to a table that is tilted while blood pressure and heart rate are monitored -- was negative, Karen Hammerman was told, because Adam's blood pressure did not fluctuate.

    Another neurologist told Karen Hammerman that some of his symptoms could be caused by POTS but that he had never seen a POTS patient with memory loss. "He said we should dial down the dialogue: 'If you stop talking about it, he'll stop paying attention to it.' " Said Hammerman, "We ignored it for two weeks, and he got worse."

    Adam remembers little from those months. "I remember I was scared, but I wasn't freaking out every single day," he said. "I did get a little sick of going to all the doctors, but I kept hoping one would figure it out."

    She kept coming back to one episode: For a year Adam had been counting down the days until he was old enough to get his learner's permit. But over the summer he told his mother he needed to stop driving because something was really wrong with him. Why would a 16-year-old boy sabotage that, she wondered.

    "These kids are so badly affected because everyone thinks they're lying. Some go from doctor to doctor and become depressed and isolated," he said. "And parents suffer along with their kids."
  • 'Every step is a battle’ BendBulletin.com - 5/31/09
    The disease: Postural Orthostatic Tachycardia Syndrome, or POTS
    Table with common symptoms of POTS and recommended treatments.
  • Little-known disorder sidelines young woman [POTS] Cleveland Jewish News - 3/27/08
                 Announces a POTS awareness video.
  • New Wiggle doesn't skip a beat Robertson County Times, TN - Feb 19, 2007
    Diagnosed with orthostatic intolerance, a disease that, although not life-threatening, causes nausea, dizziness, fatigue and other symptoms that affect balance and coordination, the singer turned over his famous yellow skivvy to his friend and former understudy...
  • Medical Dictionary: Orthostatic Intolerance The News Journal, DE - December 19, 2006
    See Group Leader Toni's comments! Add your own.
  • Orthostatic Intolerance The Capital, Annapolis, MD - December 17, 2006
    The condition that forced Yellow Wiggle Greg Page to retire at 34 also affects 500,000 Americans
    Letter to Editor by Support Group Leader Toni Marshall

  • This faint isn't fatal, but it is life changing The Australian - Dec 09, 2006
    A Wiggle's retirement has finally put the causes of fainting in the spotlight
  • Page floored by head not heart The West Australian - December 1, 2006
  • The Amazing DYNA Kids Loudoun Times-Mirror - July 18, 2006
    Features our friends at the dysautonomia/POTS group.

  • Chronic fatigue syndrome - a lot more than being tired Loudoun Times-Mirror - July 11, 2006
    Features our group and members Elly, Myra, and Mahsa!!!
    See and add your comments!
  • Chronic Fatigue Syndrome -- One Woman's Journey Loudoun Times-Mirror - July 11, 2006
    Features our group member Myra and has good follow up contact information!!!
    See and add your comments!
  • Beating the odds [NMH]  Daily News - May 18, 2006
    ... a rare heart condition called neurally mediated hypotension. According to Johns Hopkins University in Baltimore, this condition, commonly known as syncope, is an “abnormal reflex interaction between the heart and the brain,” causing lightheadedness, fainting and prolonged fatigue. “My heart will start rushing,” said Alvaro. “It feels like after I’ve been running for a while. Then my heart will stop racing and it’s hard for my body to catch up.”
  • Support Group for Rare Disorder Meets in Sterling Loudoun Times-Mirror, VA - July 12, 2005
  • Sick and Tired: Dysautonomia is Not Mere Teenage Drama Washington Examiner, DC-
    July 12, 2005
  • Living With A Disability [POTS]  NZ Girl - June 28, 2004
    It's hard enough being a teenager without having to deal with a debilitating disability like Postural Orthostatic Tachycardia Syndrome (POTS).


    • What are the symptoms of MVPS/Dysautonomia/Orthostatic Intolerance?

    There is Mitral Valve Prolapse (MVP) and there is Mitral Valve Prolapse Syndrome / Dysautonomia (MVPS/D). This page and group are concerned not with the heart valve problem, MVP, but the collection of symptoms that have come to be known as MVP Syndrome, a kind of dysautonomia where it is particularly challenging to be upright and still. That is why it is also called a type of orthostatic intolerance (OI).

    40% of patients with Mitral Valve Prolapse (heart click or murmur from regurgitation) and many people with CFS and FM have an imbalance of the autonomic nervous system (ANS) called, in general, a dysautonomia. POTS and NMH are also forms of dysautonomia.

    The ANS is composed of two systems; the parasympathetic and the sympathetic. It controls involuntary body functions, such as respiration, heartbeat, blood pressure, vision, and digestion. When this system is out of balance it can cause a myriad of symptoms, including chest pain, panic attacks, anxiety, fatigue, migraines, irritable bowel, lightheadedness, weakness, heat intolerance, alcohol intolerance, pallor or redness of extremities, numbness and/or tingling in the arms and/or legs, depression and/or mood swings, hypersensitive startle reflex, neckaches, backaches and/or other muscular tension or twitching, loss of concentration, foggy thinking or memory problems, swelling of extremities, feelings of electrical current going through your body, skin problems, sleep difficulties, allergies, feeling hot or cold-unrelated to external temperature, visual disturbances and more.

    The above combination of symptoms is known as MVP Syndrome/Dysautonomia to some. Certain finer distinctions are made for other dysautonomias such as NMH and POTS. All can be considered forms of orthostatic intolerance (OI) - literally difficulty remaining upright and still, or OI can be considered a symptom of syndrome as by Bell in CFS. Diagnosis is made by physical exam and a careful medical history, with possibly a tilt table test or modified standing test. Most people with OI, MVP Syndrome, POTS, or NMH, have nothing wrong with their hearts. The majority of symptoms are from the struggling nervous and circulatory systems. Common triggering events - childbirth, major viral illness, menopause, accident, surgery, college (leaving home and stress), death of a loved one, marriage, moving, divorce. People with MVPS/D have a higher incidence of: TMJ (temporomandibular joint dysfunction), scoliosis, fibromyalgia, PMS, fibrocystic breast disorder, tinnitus, infertility, SAD (seasonal affective disorder), altitude sickness, seasickness.

    Main source for MVPS/D symptoms: The Society for MVP's symptom page.
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    Why We Discuss MVPS/Dysautonomia along with CFS and FM
    From CFSupport and MVPS-D_OI_nova e-mails, April 2006.

     by Toni Marshall


    Becoming a co-moderator for the MVPS-D/OI email support group seems a good opportunity to offer the compelling description of MVP Syndrome, above, and how the information helped me understand the relationship between CFS and OI/Dysautonomia years ago.  Reading the list of symptoms may prove helpful for others to decide if they, too, have circulatory problems caused by an imbalanced Autonomic Nervous System (ANS).  Elly and I have been co-moderators of CFSupport for many years and, recently, I volunteered to help with the MVPS/D group since I never tire of discussing my dysautonomia experience. 

    After I'd been diagnosed with POTS in 1998 and CFS in 1997, attending every CFS group meeting, I still wondered if the NoVA CFS Support Group was the right one for me.  I didn't relate to many symptoms others described in meetings.  I didn't have email then, making it hard to get detailed information from other members, especially since I was usually quite late to meetings.  I collected handouts at meetings, but read only a few.

    A list of mitral valve prolapse syndrome and dysautnomia symptoms was included in most MVPS/D group newsletters Elly had produced for that support group.  She brought additional copies of the MVPS newsletter to the No VA CFS/FMS group meetings.  The list included many symptoms I had experienced most of my life but thought completely unrelated to each other.  Many symptoms were simply annoying, not debilitating.  I thought they meant I was just weird, as in, "Whoa, that's weird!", without further thought.  

    At the time, I had no idea what MVPS was and no idea how it related to CFS.  What a relief to realize someone somewhere had a clue concerning my symptoms, weird, scary or miserable, whatever their diagnostic name.  It was a revelation to realize so much of my "weirdness" was typical for people with these conditions. 

    To realize I'd found a place, after all, The NOVA CFS/FMS Support Group, to discuss my difficulties with people suffering similarly brought me great comfort during a bad, scary time.  I was introduced to ideas about what the diagnosis meant and suggestions offering relief (supplements, support hose, time-released prescription potassium chloride, fidgeting, rocking, semi-reclining with feet up, salt and water).   Maybe the MVPS/D symptom list and description will help others feel less alone, to trust there's a safe place for them, too.


    Toni Marshall
    Co-Author of     Inclined to Recline: Our Tips for Managing OI
    Co-Leader, NoVA CFS/FM Support Group & CFSupport
    Updated August 2006

    Joint Hypermobility, Ehlers-Danlos Syndrome, Poor Circulation
    and CFS/CFIDS, FMS, MVPS/D, OI, POTS, NMH

    Many people with MVPS/D and CFS and the similar conditions have hypermobile joints. We also hear about some members being double jointed or very flexible. Some doctors and patients have noticed an overlap with a condition involving extra-stretchiness of the blood vessels and/or other connective tissue that could be involved in poor circulation and thus many symptoms. To explore this further, check out these references: