The Northern Virginia (NOVA)
Selections from Emails, Meetings, and More
Welcome to our group and welcome to the very occasional, especially of late, late, late, newsletter for the Northern VA CFS/ME, FMS, OI & Gratitude Support Groups. Our group and website are also known as CFSnova with CFSupport e-mail. It's a bit confusing, but we have lots to offer in a variety of formats, events, topics. Hang with us and you'll get the hang of it.
This Dec 2015 CFSnova Newsletter covers the annual POTS Luck meeting, the new times for the Art of Healing Conference Calls, a few products, the 2016 schedule, and a few more things. Please excuse our typos and oopses. We're volunteers with the conditions, sometimes barely functioning between bursts of mini-activities.
Please visit CFSnova's About Us for more about our group, our history, and our facilitators.
Dec 19, 2015
POTS Luck Social
Our December 19, 2015, meeting, (that's the 3rd Saturday as usual), from 2-4 pm at the Sully Governmental Center will be our annual POTS Luck Social. It is a adaptation of a pot luck covered dish buffet where folks are asked to bring something they know if safe to eat for them. That is the first priority. Got that covered dish covered? Then second priority is to bring some to share if so moved. Bringing a list of ingredients may help to know if others will also find it safe to eat.
We have a new web page about our POTS Luck meetings, philosophies, and observations. Please visit What is POTS Luck? for more information.
As usual, due to our allergies and other sensitivities, please refrain from wearing scented products. Please let us know in advance if you are bringing a service animal. Thank you.
2nd Wed's, 3-4 pm
The day and time of our monthly phone call of support and attitude adjustment towards healing has changed from the 2nd Tuesday at noon to the 2nd Wednesday at 3 pm, Eastern time. The official duration time has been shorted to one hour (was two). We do sometimes stay on longer as was the case before.
We emphasize noticing the effects of attitude, thoughts, patterns, and beliefs on the nervous system, and we help each other break patterns that drain energy since we have little to spare anymore. Symptoms and treatments may also come up, as do practitioners and other practical matters, but in a bit different context than in a typical support group setting. We look at attitudes and seek gratitude for what is working and how to build on that rather than perpetuating our frustrations. We honor the difficult, we talk about it, and we endeavor to move through it and not stay stuck in upset.
Reminders and the phone number are given out through the Yahoo Group mentioned on our MVPS OI page.
This laptop stand may be just the thing for people to have some computer browsing time in a way that being upright isn't causing them to forget as fast as they read! Very useful, potentially.
FYI: Our Amazon Associations store doesn't function anymore. It is now in "historial" status. We no longer get a few % from certain purchases on click throughs. We were unable to keep up with their requests for information to stay current, keep tax information straight, etc. The store link on our home page will remain as it helps some folks find things, but it cannot be updated. Not sure if we we will ever try to start a new account. We are hoping all the links on our product pages will still work even though we earn nothing, otherwise we are looking at thousands of broken links someday. The upside is that the titles / product names are still there and people can then search for items that way.
Lucinda Bateman, MD, of Utah, has evolved her Fatigue Consultation Clinic (FCC) and the Organization for Fatigue & Fibromyalgia Education & Research (OFFER) into the Bateman Horne Center of Excellence (BHC),a 501(c)3 nonprofit organization to help those with ME/CFS and FMS. Suzanne D. Vernon, PhD, joins her. We've been privileged to have both of these dedicated and amazing doctors speak to our group!
Read the BHC's inaugural newsletter here. Sign up to get all the latest news on patient care and research for ME/CFS and FMS.
For 2016, meetings of the Northern VA CFS/ME, FMS, & OI Support Group, also known online as CFSNova with CFSupport, will continue to be the 3rd Saturday of every month, from 2 - 4 pm, at the Sully Government Center (and Sully District police station). It is near the Westfields Marriott Conference Center in southwestern Fairfax County, about 20 miles west of Washington, DC, and Bethesda, Maryland. The address is
Sully Governmental Center
James McDonnell Conference Room (Room 1)
4900 Stonecroft Blvd
Chantilly, VA 20151
Our directions page includes a photo of the building. The building is very close to both the intersection of Westfields Exit off Route 28 (use the west exit from 28) and the intersection of Stonecroft Blvd and Westfields Blvd. Follow signs toward conference center, but turn immediately left into parking lot after turning right onto Stonecroft Blvd from Westfields Blvd.
Please be aware traffic on Route 66 on Saturday afternoons is heavy. Consider taking Routes 50, 29 or 267 (Toll Road) to Route 28 or coming some other back roads. Thank You.
January 16, 2016
*Room 2*Post Holiday Pacing Open discussion
February 20, 2016
Discussion about coping with winter, dehydration, other topics.
March 19, 2016
Topics may include tax stuff, transpo, saving money, treatment; open discussion.
April 16, 2016
*Room 2*Talk perhaps of allergies, gentle movements, getting though a day.
May 21, 2016
Discussing coping, healing, awareness day, research, other things that come up.
June 18, 2016
Talk, cope, ideas, wonder, support, encouragement, dealing with the summer heat.
July 16, 2016
Hot inside and out, using dehumidifiers as a treatment, cooling products.
August 20, 2016
Discussion of things pertaining to summer, to CFS, to FMS, to Orthostatic Intolerance.
September 17, 2016
Pain Awareness Month, fall allergies, treatment, doctors, other open discussion.
October 15, 2016
Discussion, talk, conversing for information and healing.
November 19, 2016
Dealing with the cold and other fall topics, gratefulness as a treatment strategy, open talk.
December 17, 2016
POTS Luck Social
Bring a dish you can safely eat.
Visit our Events page for other meeting information.
To People With Invisible Illnesses, From a Paramedic Who Didn't Believe You "If someone said he or she had fibromyalgia, for example, I assumed that person was a drug seeker. I thought everyone could walk to the ambulance. If you didn’t have a visible illness, I treated you like crap. 'C'mon, you can walk,' I'd say. It wasn't until my own health began to decline and I needed help that I began to understand. .....
[Compassion] isn't taught in med school. I wish more awareness existed. So please continue to educate the medics out there. We really do love to learn."
The Mighty / 11-27-15 / by Ashley Mould
"If someone said he or she had fibromyalgia, for example, I assumed that person was a drug seeker. I thought everyone could walk to the ambulance. If you didn’t have a visible illness, I treated you like crap. 'C'mon, you can walk,' I'd say.
It wasn't until my own health began to decline and I needed help that I began to understand. ..... [Compassion] isn't taught in med school. I wish more awareness existed. So please continue to educate the medics out there. We really do love to learn."
NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
NIH News Release / 10-29-15 / by NIH
"NIH's direction on the disease is being guided by a recent Institute of Medicine report, that recommended new diagnostic criteria and a new name for the disease (Systemic Exertion Intolerance Disease), and an NIH-sponsored Pathways to Prevention meeting that generated a position paper and report with recommendations for research strategies."
"Kingsland ... spent time during her long recovery tending to her creative interests instead. Through the experience, she gained personal insight into the connection between the artistic process and healing. Art-making helped her get through a difficult period and put her on a future trajectory of helping others struggling to heal."
[Congrats to one of our members/moderators, Sarah, and one of practitioners, Dr. B, for being in the photo for this article on art therapy. They just happened to be wheeling by during unrelated CFS testing when the photographer was taking photos.]12 Things No One Tells You About Chronic Fatigue Syndrome
"Part of the problem, Head says, is that non-sufferers hear "fatigue" and think they understand what a CFS sufferer is going through. But they really don't. "People who have endured both chemotherapy and ME/CFS say ME/CFS is even more debilitating, so 'fatigue' is not a good word for it," she [Carol Head] says."
Elly wrote a piece on Thanksgiving reaching out to others who may be feeling especially detached around a holiday. Now the piece now is on our website, too, as a webpage and as a printable PDF. See the webpage On Thanksgiving 2015 or the PDF On Thanksgiving [or any holiday, any day].
Your hands may work pretty well, but eating with your feet up or actually lying down due to exhaustion or orthostatic intolerance leads to some extra spills. More elegant bibs are on the market these days. Here are three links, two for ladies and one for men. Check this out if you eat reclining and have the strength to wrestle with a bib. Sometimes that's easier than all that stain fighting. Using a kitchen towel kept in your recliner/on couch works, too.
There is so much to be upset about! You feel terrible. You can't do much. People don't understand. Doctors and/or family can be dismissive. Great doctors don't have much symptomatic relief to offer that doesn't cause more symptoms. You can't eat many foods or go to certain places. You feel like every cell in your body is pleading for you to give up, stop, help.
The negative situation may breed negativity and ungratefulness which can weigh one down further. Moving one's attitude from grrrrr to grrrrateful, about small things or big things, can save energy, calm the nervous system, promote healing. We have a subgroup that actively works on shifting into gratitude states for healing. We make the effort because though it costs little to nothing, the pay off is often huge. It has worked again and again for several of us.
Please inquire about out gratitude group called EGG for Elly's Gratitude Group or start your own independent practice. Gratitude is grrrrreat fuel for the energy starved!
To receive e-mail of items as they happen rather than wait until they've been compiled into a newsletter, please join our Yahoo group CFSupport. Subscriptions can be set to "Special Notices" if you prefer almost no e-mail and read items on the web. Alternatively, one can subscribe by sending a blank e-mail to firstname.lastname@example.org to start the joining process.
Note: Only leaders can post to our CFSupport, announcement only, list. Members can send in suggestions or requests for posts that go through the moderators. This way, we keep the number of emails to far fewer than one per day on average. We know how difficult information overload and overwhelm can be.
Yahoo ID-holding members of CFSupport who can remember or find their Yahoo passwords may browse and search our archives, view our calendar, download files, see the rarely used rideshare database and more. All members may receive our current updates of interest regarding CFS/CFIDS (chronic fatigue syndrome) / ME (myalgic encephalomyelitis), FMS (fibromyalgia syndrome), and OI (orthostatic intolerance including POTS and NMH) via e-mail or the web.
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Disclaimer: CFS Nova contributors are volunteers with the experience of puzzling syndromes with no intention to act as medical, counseling, or legal professionals. Please use or ignore our content at your own risk and for your own reward. Seek qualified practitioners for diagnosis, treatment, and legal matters.