TABLE of CONTENTS
Art of Healing Dysautonomia with Gratitude and Friends Group is a name
change for the Northern Virginia MVP Sydrome / Dysautonomia &
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 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
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
events, we ask attendees to please refrain from wearing scented
Teleconferences are the 2nd Wed of each month at 3 pm Eastern.
Meeting Facilitators: Elly Brosius, Toni Marshall
Moderators: Elly, Toni
Email address: firstname.lastname@example.org (reaches
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
Intolerance / Dysautonomia Resources & Articles
- Q&A, Our Way: Ache in
Shoulders, Pain in the Neck [Coat Hanger Pain]
- Q&A, Our Way: Orthostatic
Intolerance Brosius / CFSupport
- Q&A, Our Way: Anesthesia
& Procedure Preparation CFSupport
HeartMath Techniques for Coping with Stress CFSupport
Area Health Practitioners - Cardiology/Dysautonomia CFSupport
to Recline: Our Tips for Managing OI CFIDS
Chronicle, Marshall & Brosius
Signs and Symptoms of Dysautonomia [PDF] Debra L. Dominelli / DYNA
- What is Dysautonomia? DYNA
- What is Dysautonomia? NDRF
- Dysautonomia Wikipedia
- Neurally Mediated Hypotension Our FM/CFS World, Inc
and OI in Children and Adolescents CFIDS Assoc of
Other Illness Like This One Joan S. Livingston
Intolerance The Pediatric Network
Intolerance and its Treatment Chronic Fatigue
Clinic, Johns Hopkins
Orthostatic Tachycardia Syndrome: A Potentially Treatable
Cause of Chronic Fatigue, Exercise Intolerance, and Cognitive
Impairment in Adolescents PACE
Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis
& Management. Review Raj, Autonomic
Dysfunction Center, Vanderbilt University - new!
Tachycardia Syndrome: Concise Guide to Diagnosis &
Tachycardia Syndrome: When to Consider it in Adolescents Grubb
An Overview POTSPlace.com / DINET
Procedure for Taking Standing Blood Pressure DYNA
What Helps? PotsPlace.com
Dental treatment considerations JADA / DYNA
group for rare disorder meets in Sterling Loudoun Times-Mirror
Hose Help OI: Why to Wear, Where to Buy CFSupport
Symptom of OI in CFS by David Bell Spr/Sum 2005
National ME/FM Network
- The Young & The Dizzy
- And the Beat Goes On
Newsletter Archives Society
for Mitral Valve Prolapse Syndrome
Finding Support Groups
Newest Books & Video
Fainting Phenomenon: Understanding Why People Faint and What to do
Blair P. Grubb, MD. Paperback - Jan 2008
Control: Living with the Mitral Valve Prolapse Syndrome, 3rd
by Dr. Kristine A. Scordo
- DYNA 2006
Summer Chill "Goofy Slipper" Lecture on Dysautonomia with
Phillip R. Fischer, MD Mayo Clinic
Blair P. Grubb, MD, Medical University of Ohio
Julian Stewart, MD, NY Medical College
and the Inner World: An Introduction to Scientific Integrative Medicine
by David S. Goldstein, March 2006
Mitral Valve Prolapse Syndrome/Dysautonomia Survival Guide, 11/2002
Durante & Durante
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
The Principal Is Back
East Hampton Star -
"They don't feel rested. They're completely drained. The inner balance is completely derailed."
"'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 -
"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
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 -
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 -
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
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
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."
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
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 -
The disease: Postural Orthostatic Tachycardia
Syndrome, or POTS
Table with common symptoms of POTS and
Little-known disorder sidelines young woman
Jewish News -
Announces a POTS awareness video.
New Wiggle doesn't skip a beat Robertson
County Times, TN - Feb 19,
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...
Dictionary: Orthostatic Intolerance The
News Journal, DE - December 19, 2006
See Group Leader Toni's comments! Add your own.
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
to Editor by Support Group Leader Toni Marshall
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
floored by head not heart The West Australian
- December 1, 2006
Amazing DYNA Kids Loudoun
Times-Mirror - July 18, 2006
Features our friends at the dysautonomia/POTS group.
fatigue syndrome - a lot more than being tired Loudoun
Times-Mirror - July 11, 2006
our group and members Elly, Myra, and Mahsa!!!
See and add your
Fatigue Syndrome -- One Woman's Journey Loudoun
Times-Mirror - July 11, 2006
our group member Myra and has good follow up contact information!!!
See and add your comments!
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.”
Group for Rare Disorder Meets in Sterling Loudoun
Times-Mirror, VA - July 12, 2005
and Tired: Dysautonomia is Not Mere Teenage Drama Washington
July 12, 2005
Living With A
Disability [POTS] NZ Girl - June 28,
It's hard enough being a teenager without having to deal with a
debilitating disability like Postural Orthostatic Tachycardia Syndrome
the symptoms of MVPS/Dysautonomia/Orthostatic Intolerance?
There is Mitral
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
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.
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
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.
Discuss MVPS/Dysautonomia along with CFS and FM
From CFSupport and MVPS-D_OI_nova e-mails, April
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
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
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
described in meetings. I didn't have email then, making it
to get detailed information from other members, especially since I was
usually quite late to meetings. I collected handouts at
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
The list included many symptoms I had experienced most of my life but
thought completely unrelated to each other. Many symptoms
simply annoying, not debilitating. I thought they meant I was
just weird, as in, "Whoa, that's weird!", without further
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
discuss my difficulties with people suffering similarly brought me
great comfort during a bad, scary time. I was introduced to
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,
Co-Author of Inclined
to Recline: Our Tips for Managing OI
Co-Leader, NoVA CFS/FM Support Group &
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: