Toni's Attitude of Gratitude (TAG) for Our Group
Letters & Remarks by Toni Marshall
Table of Contents:
Letters to the Editor
Thank you for the enlightening article about postural orthostatic tachycardia syndrome, a form of orthostatic intolerance, or OI, which is in turn a form of dysautonomia (The Sunday Capital, Dec. 17).
Your article covered OI's impact on patients' bodies and how patients' lives are changed. It discussed Greg Page's disabling symptoms, tests used for diagnosis, etc. It provided more information than any other article I've read so far.
I'm saddened by Mr. Page's struggle with his illness, as I know the difficulties involved.
Yet the attention paid to OI and orthostatic tachycardia because of the popularity of Mr. Page and his group, the Wiggles, with children and their parents may prove helpful for OI patients. These patients are often misunderstood, dismissed or disrespected by families and others, including doctors and other professionals.
There are many forms of orthostatic intolerance including postural orthostatic tachycardia syndrome, mitral valve prolapse syndrome, neurally mediated hypotension, and others, as well as related syndromes such as fibromyalgia.
I'm grateful you include Dr. Peter Rowe's mention of chronic fatigue syndrome as related to OI. For many of us with one or more of these syndromes, the article's inclusion of the connections revealed an impressive grasp of the real story. I deeply appreciate the depth of the article.
Thanks to your article, as it spreads throughout the Internet, help may become more readily available for hundreds of thousands of patients and their personal and professional caretakers around the world.
I am the co-leader of a Northern Virginia support group for patients with chronic fatigue syndrome, orthostatic intolerance and fibromyalgia syndrome.
Reprinted with permission. Published 12/2006 in response to the article on 12/17/2006:
The condition that forced Yellow Wiggle Greg Page to retire at 34
also affects 500,000 Americans
Reprinted at CFS-info.com
Toni's Opening Remarks at the First KNOW MORE CFS Seminar
"Welcome. Thank you for coming to the CFIDS Association of America’s first ever “Know More Chronic Fatigue Syndrome” conference. I'm Toni Marshall, support group email moderator and sometime leader of meetings for the Northern Virginia Chronic Fatigue Syndrome / Fibromyalgia Support Group. The CFIDS Association saved my life, seven years ago, when they led me to the Northern Virginia group and Elly Brosius, who led me to a good doctor, all of whom who took me seriously, for a change.
Our group meets at a new location: the Mason Government Center in Annandale, VA, on the third Saturday of each month.
Elly Brosius is my best friend and mentor. She's the real leader and backbone of the NoVA support group for the last 12 years. She’s had articles published in The CFIDS Chronicle: a companion piece to an interview with Dr. Peter Rowe called "Johns Hopkins Breakthrough?", and "Inclined to Recline" on coping with Orthostatic Intolerance, which we wrote together.
As many of you know, Elly is quite unique in her ability to understand and explain how these confusing conditions impact our bodies, and what it looks like in our daily lives, making connections to symptoms many of us are unwilling or unable to recognize.
Elly explains all this to people with major cognitive dysfunction in a way that's easy to understand. Then, she repeats it as often as we ask her to, knowing we’ll forget, yet again. She's published her home phone number far and wide, willing to answer the phone to anyone needing information or comfort due to these conditions. Elly reminds me of my favorite minister. By helping me understand my limitations and their impact on myself and people around me, she makes me uncomfortable enough, yet, I feel safe enough to accomplish change. Elly is a stunning model of change herself.
I'm grateful to the CFIDS Association for hosting this event in OUR NEIGHBORhood. Kris and Nova of the CFIDS Association have been working with Elly, who has been working hard from home, with her feet up, organizing this event to make it as helpful, comfortable, and easy to find as possible for CFS/FMS patients. Nova, working with the NoVA Support Group has been confusing at times, yet, also, fun.
Speaking of comfort, two 15 minute breaks are planned, with three 45 minute sessions. PLEASE, get up and walk during the two breaks, even if you feel just fine sitting. Increasing circulation helps with so many symptoms. Do what’s necessary to take care of yourself. For instance, support your head on your hands for a few minutes, drink extra water, sneak snacks, walk a bit to get blood moving back up to your head.
During the speakers' sessions, you are encouraged to:
1- fidget quietly;
2- get your feet up on something, a purse/tote, whatever you can find;
3- if you must, it's ok to get up and walk, quietly, to increase circulation.
We want you to feel nearly as good by the end of the meeting as at the beginning.
In your folders, look for the Evaluation sheet and a small pencil. The CFIDS Association is looking forward to your feedback on this event. If you keep this handy to fill out during the meeting, rather than at the end, you're more likely to complete it. I know for myself, I'll want to talk to the speakers, friends and those sitting near me, and won't be able to concentrate enough to fill it out at the end.
Also, note the 3 x 5 cards in your folder for questions to ask our speakers in the last 45 minute session. Keep these handy to write questions as you think of them during the first two sessions. Pass the cards to the end of the row throughout the meeting. Volunteers will pick them up. By the way, say thank you to the volunteers you meet. They have name tags that look like mine. Please fill out and wear your own name tag. I'm more likely to remember you next time I see you.
Our local support group has a table in the corridor with information about our group, CFS/FM articles, a Resource List of local professionals willing to work with CFS/FM, a page of upcoming speakers, people to answer questions, and, 2 posters of amusing photos from previous events. People looking to go out as a group or groups for dinner may find each other at our NoVA Support group table, where you’ll also find a list of local restaurants.
Diane Bean is introducing our first speaker. Diane is an advocate for her daughter with CFIDS. Diane became a member of the Board of the CFIDS Association in November 2004. She’s attended CFIDS Association Lobby Days for several years. She's received our NoVA Support Groups emails for many years, too. She and I talked on the phone once. Elly didn't know she was sitting next to Diane at the June 2004 Federal Government’s CFS Advisory Committee meeting until Lauren and Diane stood up to testify and stated their names. I met Diane and Lauren for the first and only time on Lobby Day a few years ago in Senator Paul Sarbanes' office. I was lying on the floor in his lobby, trying to recover from slogging around Capitol Hill on a hot day. Thanks, Diane, for not calling security.
That's the nature of our friendships and associations through the Support Group; we know each other without meeting for years, if ever, thanks to the phone, email, and CFIDS Association and Chronicles.
I'm happy to introduce Diane Bean, today, and see her, again, in person."
Elly Brosius and Toni Marshall say thank you to our volunteers from the group: Andy Fleming, Polly & Sara, Cheri B, Colleen R, Bobby Pevarnik; and from the professional community: Jason Strahin (dog hydrotherapist), Jonathan Gilbert (herbalist), Sam Makoul (nutritionist), John Cox (hypnotherapist), and Shanon McQuown (author of Harnessing the Wind, Chronic Fatigue Syndrome and My Son).
See a few snapshots at our Photo Gallery.
About this event:
In a new Education and Empowerment Seminar Series, The CFIDS Association of America works with local support groups, hosting half-day seminars around the country. The kick-off event took place on June 25, 2005 in Reston, Virginia, at the Bechtel Conference Center in partnership with us, Northern Virginia CFS/FM Support Group. The featured speakers were Dr. Lucinda Bateman, a CFIDS clinician and Staci Stevens, MS, an exercise physiologist who specializes in helping PWCs improve function and mobility. The series’ theme is kNOw MORE CFS, intended to reflect the dual objectives of educating PWCs and empowering them.
After the event, an article "Kickoff Seminar = Big Success!" by Jamie Davis appeared in the Summer 2005 issue of The CFIDS Chronicle and the following appeared in the July 2005 CFIDSLink.
kNOw MORE CFS Seminar a Success
More than 150 people with CFIDS, caregivers, support group leaders and health care providers gathered at the Bechtel Conference Center in Reston, VA for the Association’s first kNOw MORE CFS Education and Empowerment seminar.
Working in partnership with the Northern Virginia CFS/FMS Support Group, the Association- sponsored half-day program featured CFS experts Dr. Lucinda Bateman and Staci Stevens, MA.
Dr. Bateman, an internist who has limited her practice to CFS and fibromyalgia patients, shared treatment strategies to help participants maximally manage underlying/overlapping conditions and symptoms. Staci Stevens, an exercise physiologist, discussed energy conservation, balancing rest and activity and how to improve function through a restorative exercise therapy program.
“This event lived up to its name. I left educated and feeling empowered,” remarked attendee Laura F. from Silver Spring, MD.
The next seminar is scheduled for November 13, 2005 in Charlotte, NC. Watch upcoming issues of CFIDSLink for details. Or send an email, subject line KNOW MORE, to firstname.lastname@example.org and we’ll put you on our mailing list.
Toni is looking for her handwritten letter....
1999 CSN Action and Champion Awards listed at CFIDS.org